Men - Post your IC symptoms

[Alex1981]

Name: Alex
Age: 25
Diagnosed: About 2 months ago
Current Meds: Elmiron (3 times a day)
Elavil (1 before I go to bed)
Ditropan XL (1 in the morning)



In the beginning (Pre without Meds):
1.) Constantly feeling like I had to pee even after peeing. Very strong intense urges to pee.
2.) Weak stream
3.) Sensation of orgasm without ejaculation
4.) Peeing at least 10-20 x a day

Currently (Post with Meds):
1.) I still have a pretty weak stream compared to before. Sometimes I have to push to get the remainder of the urine out.
2.) Sometimes after orgasms the head of my penis has a throbbing sensation.
3.) Peeing about 5-7 x a day

Luckily whenever I had/have the peeing sensation I am able to pee. Sometimes it takes a minute but I eventually get it out. I've also heard accounts of pain during ejaculation but haven't had that sensation. I never wake up at night to pee and am able to sleep fine during the night. In the morning I always have to pee. Since the meds my symptoms have greatly improved. I don't even mind peeing so much I'm just glad to have the "feeling like I have to pee" sensation gone. I have also never wet myself. I have been able to hold it even though I have felt acouple of times that I was going to explode.

[Alex1981]

Oh yeah and dry mouth. I have SUPER dry mouth in the morning but am ok the rest of the day.

[Trying2Cope]

Name: Terry
Age: 42
Diagnosed: About 2 years ago
Current Meds: For IC...1000 mg each of glucosamine with MSM and 500 mg of quercitin 2 x a day. I used to take 3 Elmiron a day, and it was a lifesaver in terms of helping me cope with my pain in the beginning. I also took Uroxotral, tramadol and hyrdoxizine (for sleep)

For low testosterone...Androgrel

Before diagnosis:

1. Constant burning in my urethra. I got tested for sexually transmitted diseases two or three different times (negative).
2. Misdiagnosed with prostatitis. I took antibiotics, which did nothing, and might have actually made the IC worse.
3. Sharp stabbing pains during urination, like pieces of glass were passing through my urethra.
4. Pain during orgasm, and reduced amount of semen (sometimes no semen at all)
5. Weak urine stream
6. Constant pain which would keep me up all night

2 years after diagnosis:

1. Only occasional pain, usually if I forget to drink enough water or if I eat something very spicy (or something with MSG in it. For some reason, MSG is a bladder killer!)
2. Pee about 5-8 times a day, which was normal for me before IC
3. I can have sex without pain. Semen output is still not what it used to be, but I attribute that to low testosterone
4. Sometimes have pain AFTER sex, but it feels good during again

Believe or not, you eventually get used to a certain amount of pain and just learn to live with it. I am virtually pain-free now, two years after diagnosis, but i would not say I'm "cured". I still have days where I don't feel normal, but I feel a LOT better than I did before diagnosis!

[.........*sigh*]

Age: 18
Diagnosed: CPPS about a little less than a year ago
Current Meds: None but used to be on Elmiron 3x a day then down to 1x

Before Dx:
1. Having a sensation to pee even after having just went
2. Discomfort in the pelvic area
3. Tender Prostate
4. Slightly weak stream
5. Back pain and leg pain

Currently:
1. Discontinued Elmiron to test if it really worked or it just acted as a placebo
2. Slight pains here and there
3. Only have to urinate 3-5 times a day.
4. Ejaculation brings back frequency and pain for about 1-2 days

I was on Elmiron for about 6 months or so. I was taking it 3x then my uro told me to try 1x a day and see if my symptoms get worse. They didn't. I went off Elmiron a couple months ago and symptoms are relatively the same. I feel some pain and discomfort here and there but for the most part I am much better. My uro thinks it could either be IC or prostatitis so he just diagnosed me with CPPS as an umbrella dx so I can be on both Elmiron and alpha blockers if and when he percribes them to me. I've been feeling symptoms that are closer to people with prostatitis rather than IC but the symptoms are pretty close together so I really don't know...

[Tip and IBS]

Dude you are pretty young to have "prostate pain".

I have permanent pubic discomfort and burning.A LOT worst in the summer.

I also have irritable bowel syndrome(common with IC) which seems to really mess up the pubic area as well.Not to mention i suffer from constipation,my main symptom.:confused:

All these fluctuation cause the irritation of the tip of my penis.

[Gscheel]

Age: 33
Never diagnosed w/ IC or prostatitis (still not sure which, both or something else)
Symptoms:10 plus yrs w/ urehtral burning AFTER urinating, feeling of needing to urinate almost immediately after urinating, sometimes frequency especially after a bowel movement. Depression/Anxiety due to these problems. Most recently an undescribeable feeling in my head like fog, not completely awake. Pain when sitting.

Past medications: months of abx, pyridium, vallium, muscle relaxers and all herbal remedies all w/ no effect.

Current medications: msm w/ glucosamine, ativan, atarax, cystaQ, flomax
still no effect. Only been doing these for about 2 to 3 weeks.

Just as confused as ever and just praying to find something to help.

[.........*sigh*]

That's what I thought too...But got a DRE to confirm prostate tenderness and whatnot

[Tip and IBS]

Wow .........*sigh* ,i have seen numerous doctors for pubic pain and they RARELY do the finger test for me.:confused:

[tmog]

SWM/38
Mine started almost 2 years ago with the pelvic pain, frequency, urgency, weak stream. I wasn't officially diagnosed with IC but my doctor explained that it might be. The PST (potassium sensitivity test)was inconclusive. At that time my Uro prescribed lots of antibiotics, Elavil & Flomax and wanted to do Cystoscopy with hydrodistention but I got scared thinking it was major surgery. I haven't been back since. I only wanted the elmiron. Now, I no longer have health insurance and cannot afford the Uro fees. Currently, I experience perineal pain, pain in my buttocks, left leg/thigh. pelvic pains, full bladder pains. Pains during/after ejaculation. Abdominal pain.
I started taking the prelief a week ago, but not sure if it really helps. I've given up my morning coffee and all the other things I enjoy eating & drinking. I'm losing my mind and all this is making giving me anxiety & panic attacks. I feel crippled & disabled. I just don't know what to do. I want to marry this girl but I can't share my disability and my male disfuction in the relationship. Can anyone help me? :toilet:

[Firestarter]

hello,Im 34 yr old man...

DX in November w/ Ic. My life has been a living pain daily w/ frequency and pelvic pain.Some are not that painful but still the frequency drives me into anxieties and depression.
I'm currently taking Elmiron which does nothing for me...the bladder installtions are like 3x's a week; it only helps momentarily!

At night,I wake up to urinate and possible IBS due to bloating , gasses and constipation and pain on my left side of the lower abdominal. I'm waiting to see a GI doctor. I tell you ...it's not easy but im trying every thing possible !!!

I also tried the Glocasamine msm and quersetin diet, still nothing!!

I pray to God that you all find a remedy and peace with this situation.
Please feel free to contact me to chat... Thank you all for your support!!

:loco:
:pray:

[tmog]

Hi Firestarter..
Yes, I can relate to your suffering.. How long have you been on Elmiron? Have you also tried Prelief? What else have you tried? Are you avoiding the foods that can make this worst? I wish you well and relief from your suffering.


:pray:


hello,Im 34 yr old man...

DX in November w/ Ic. My life has been a living pain daily w/ frequency and pelvic pain.Some are not that painful but still the frequency drives me into anxieties and depression.
I'm currently taking Elmiron which does nothing for me...the bladder installtions are like 3x's a week; it only helps momentarily!

At night,I wake up to urinate and possible IBS due to bloating , gasses and constipation and pain on my left side of the lower abdominal. I'm waiting to see a GI doctor. I tell you ...it's not easy but im trying every thing possible !!!

I also tried the Glocasamine msm and quersetin diet, still nothing!!

I pray to God that you all find a remedy and peace with this situation.
Please feel free to contact me to chat... Thank you all for your support!!

:loco:
:pray:

[Firestarter]

Hi Firestarter..
Yes, I can relate to your suffering.. How long have you been on Elmiron? Have you also tried Prelief? What else have you tried? Are you avoiding the foods that can make this worst? I wish you well and relief from your suffering.


:pray:
Elmiron

--------------------------------------------------------------------------------

Yes, Ive been on and off the elmiron... last time I was taking it for 3months back in Nov/06; no change. I also tried prelief for about a month and nothing. I still suffer ocasionally from pelvic pain and all the time I have frequency.

I'm also trying to stop drinking alcohol(vodka tonics or Gin tonic)..I know it's a major trigger but it's hard when I go out and socialize but that would be like two drinks 3x a week the most! I dont feel pain when I drink them just a lil frequency but the next day lo' and behold pain and urgency is max... Hopefully , i can give up those casual drinks soon and see how good I feel..

Believe it.. it's hard!!!
__________________
Firestarter
Current Meds:
Prozac to control anxieties due to IC.
Stop takin Elmiron because of the side effects... Headaches, nausea, blurry vision and Fatigue.Back on Elmiron
Feel alot better off the Emiron frm anxieties. Still have urinary frequency and at night it's worse with flatulence,mucle cramps and spasms.
Low testosorone, On Pacthes!
Hydroxyzine pamoate 25mg

[GGOMEZ]

Hello Firestarter,

I was diagnosed last March and I understand what you are going through. I have done well with Elmiron. When I started it, I was going 30-35 times a day. Now I am down to 8-12 times a day. Originally I was doing the bladder IC treatments (Elmiron) 2 times a week but now I am down to twice a month. Diet is very important. I don't do any alcohol drinks at all. It was hard giving them up but now I really don't miss them. I used to drink very little water but now I drink a lot of water as a substitute for tea, cocktails, soft drinks etc. I still struggle with bloating and cramps and periodically with pain that radiates from my bladder down to my scrotum. I also have quite a bit of pain during ejeculation. I have more better days than bad ones. Currently I am struggling with retention during the night. Perodically I now have to cath myself in order to empty my bladder. Elmiron, taken orally and directly into the bladder certainly have help me. Some other meds that help are prelief with every meal and at bedtime. I also take neuraton at bedtime(900mg) that helps me sleep. Currently I only get up about two times a night.
I have found that I need to take my meds at about the same time each day or I start bloating and feeling good pressure in the bladder area. Bentyl with every meal and bedtime also helps with bloating. I don't know whether this helps or not but feel free to email me directly if you wish. I can say that I am much better now than I was a year ago. Keep working at it.

[Tip and IBS]

Wow,i'm sooo bored of this burning at the base of my penis and irritable bowel.

I hope i feel get releif soon.:bonk:

[jason16]

I was diagnosed in Dec '03 with cystoscopy and symptom profile.

Symptoms
- Urgency and frequency
- Feeling of aching / burning / "rawness" in bladder & pelvic area
- Voiding dysfunction / weak stream
- Physical anxiety - almost certainly from the pain

Current Treatment
- IC Diet
- Stretching & Walking
- Neurontin: 200mg 2x day
- Diazepam: 2mg as needed
- Norco/Lortab: 5-10mg as needed

Previous Treatments
- Elmiron: 2 separate 6-9 months trials, with no noticeable improvement.
- Hydroxyzine: Again, 2 trials with no obvious improvement.
- MSM / Glucosamine / Quercetin: On and off again. I need to standardize a few trial periods.


Interestingly, I acclimated to the hydroxyzine after a few weeks and avoided drowsiness; however, I recently have developed a strange intolerance to ANY antihistamine. They now knock me out for 2-3 days. Very strange.

[Firestarter]

Neurontin: 200mg 2x day
- Diazepam: 2mg as needed
- Norco/Lortab: 5-10mg as needed
I was diagnosed in Dec '03 with cystoscopy and symptom profile.
Hello,
these meds that you're on ...are they for anxieties and pain. I have the same raw bladder feel all day and frequency to urinate. I will be seeing my urologist soon. I was doing insatalations but they just made it worst. I would probably want to start Diazepamor something different. Man I wish I can figure things out soon!!!




















Symptoms
- Urgency and frequency
- Feeling of aching / burning / "rawness" in bladder & pelvic area
- Voiding dysfunction / weak stream
- Physical anxiety - almost certainly from the pain

Current Treatment
- IC Diet
- Stretching & Walking
- Neurontin: 200mg 2x day
- Diazepam: 2mg as needed
- Norco/Lortab: 5-10mg as needed

Previous Treatments
- Elmiron: 2 separate 6-9 months trials, with no noticeable improvement.
- Hydroxyzine: Again, 2 trials with no obvious improvement.
- MSM / Glucosamine / Quercetin: On and off again. I need to standardize a few trial periods.


Interestingly, I acclimated to the hydroxyzine after a few weeks and avoided drowsiness; however, I recently have developed a strange intolerance to ANY antihistamine. They now knock me out for 2-3 days. Very strange.

[jason16]

I've added the treatment target for each medication that I use.

- Neurontin: 200mg 2x day --> Nerve Pain
- Diazepam: 2mg as needed --> Muscle Spasms / Anxiety
- Norco/Lortab: 5-10mg as needed --> Pain

To address your anxiety, diazepam (Valium) is a reasonable choice if you have muscle spams or voiding dysfunction. In addition to helping with anxiety, diazepam seems to target the relaxation of the smooth muscles more than the other benzodiazepines. A good benzo for occasional anxiety treatment is alprazolam (Xanax). I will warn you that these benzo drugs are horribly addictive, so you need to be prepared for that, if you take that route. For a less addictive anxiety medicine, an SSRI, like Prozac or Paxil, might represent a better option.

[jrn1]

Hi I finally decided to join this forum. I was diagnosed with IC 10 years ago. But I had it for at least 4 years before that. I am a male(so many of the urologists never even thought that I could have IC). I had searing pain and I was freaking out. The first urologist said I had a blockage and that I needed to have a terp. Which is to cut away part of the prostate. This is for guys who have enlarged prostates. I was in so much pain I agreed. But I was barely 40 years old. My wife stopped me. Thank God. I was 1 day from having the operation. Thwas a close call. I went to several more urologists and they all said I had non-bacterial prostatitis. They even questioned that the pain was all in my head. I finally found a urologist who suspected IC. I had the procedure where they infalte your badder with water and then look inside with a scope to see what was happening. I was then diagnosed with IC.
I did the DMSO Cocktail bladder installations and was much better. But I became allergic to Heprin and thus could no longer do it.(that was a truely terrible experience) Life has been up and down since. I found alpha stim helped a bit with the pain. My acupuncturist helped to some degree. He also suggested taking Naticor and serralone enzymes on a empty stomach. This has helped over the last few years. It seems to reduce the inflammation. But I still get flare ups and I have had two major flare ups in the last 4 weeks. Which really concerns me. I was in so much discomfort I was beside myself. I am better today though it still is bothering me. I take 25mg of atrax twice a day. Also 5 mg of Hytrin before bed. Plus 6 caps of Bladder Q. And the Naticor and serralone 3 times a day.
It took me awhile to join this board. I figured few men would be on here.
My wife is very understanding. But still I needed to talk with someone else who has this problem. It can be tough to cope with. There are days I pray to just be normal. It's a bit better today but I don't feel totally comfortable.
I have increased my intake of the enzymes and also I take urised to numb some of the pain. Though I have side effects from this stuff and can only take it for about 4 days or so then i have to quit.
What do you fellow sufferers do when you have major flare ups? What are your triggers fior a flare up? I myself need to be better I figuring out what those triggers are and avoid them. I know a fair amount of them But once in awhile and new one will crop up. Any of you have the same problem as I had in finding a urologist who actually would think that a man could have IC?

Thanks
Jrn

[jason16]

Shortly before I was diagnosed, I saw a urologist who claimed that men don't get IC. I didn't know much about IC at the time, but I knew enough never to see him again. The crazy thing is this... he's worked in the same office for years with my current urologist who is somewhat of an IC specialist and is very knowledgeable about men and IC.

I guess they don't talk much around the water cooler.

[jrn1]

My urologist thinks many more men have IC than 10% of all IC patients. That many men are misdiagnosed. That wouldn't surprise me. I think many urologist think as your orignal guy thought. Men can't get IC. But Hey, I'm here to tell ya , we do.
When one suggested in was all in my mind I got really upset. Typical of Doctors who can NOT figure out what it is. thanks for your reply Jason.

[jrn1]

I do know that if you are a man finding the right urologist is the very very important. So many urologists don't even factor in the possibilty that a man can have IC. It certainly took me awhile to find one. At least two of the ones I went to pressured me to get a terp. Which would not of helped at all.
With the reactions I have to the wrong foods it's pretty obvious now it's IC.

[strobers]

My life turned upside down this last April, April 6th. For the last year and a half I have been experiencing frequent urination, but no pain. On April 6th, almost immediately after ejaculating, I voided but continued to feel like I hadn't gone yet. My frequency also increased dramatically. The feeling I experienced was absolute torture. I went to see my GP who referred me to a urologist. After doing two bladder ultrasounds, a urine culture, and a cystoscopy, I was diagnosed with LUDE, which approximates the same symptoms as IC. In fact, from what I've researched, CI/LUDE/CPPS are all umbrella terms for bladder disfunctions that manifest themselves via infection, inflammation, and nuero-muscular problems. I'm currently on Elmiron 400 mgs/day and Ativan .5 for anxiety and Hydrocodone when I'm in severe pain.

I'm going to be going on Effexor and Neurontin in the next day or two to see if my anxiety is contributing to the problem. I've been miserable. I graduated with my Masters on Saturday and the whole time I was in such pain that I could barely walk up the plank to get my certificate. It just ruined my day.

The only symptoms I have is the constant need to urinate and urgency, which seems to have decreased since I started omitting the foods that are supposed to make things worse. When I feel pain, it's the pain one gets when you hold your urine in for so long you want to explode. Other than that I am not experiencing any other pain anywhere else in my body.

Can anybody relate to this at all?

[Firestarter]

strobers , I can relate to your pain and frustration...
it has dramatically change my life!!!

I have decided to get of all those anxiety meds cause all they do is make me an addict. I'm trying other natural sources for instance Tryin2cope for his recipe on Glocasamine and MSM.
I'm really good with my diet although every day I discover something that provokes my pain.

I wish you the best in your search for relief. Please, keep us updated on your findings!!!

Good Luck!!!

[jrn1]

My life turned upside down this last April, April 6th. For the last year and a half I have been experiencing frequent urination, but no pain. On April 6th, almost immediately after ejaculating, I voided but continued to feel like I hadn't gone yet. My frequency also increased dramatically. The feeling I experienced was absolute torture. I went to see my GP who referred me to a urologist. After doing two bladder ultrasounds, a urine culture, and a cystoscopy, I was diagnosed with LUDE, which approximates the same symptoms as IC. In fact, from what I've researched, CI/LUDE/CPPS are all umbrella terms for bladder disfunctions that manifest themselves via infection, inflammation, and nuero-muscular problems. I'm currently on Elmiron 400 mgs/day and Ativan .5 for anxiety and Hydrocodone when I'm in severe pain.

I'm going to be going on Effexor and Neurontin in the next day or two to see if my anxiety is contributing to the problem. I've been miserable. I graduated with my Masters on Saturday and the whole time I was in such pain that I could barely walk up the plank to get my certificate. It just ruined my day.

The only symptoms I have is the constant need to urinate and urgency, which seems to have decreased since I started omitting the foods that are supposed to make things worse. When I feel pain, it's the pain one gets when you hold your urine in for so long you want to explode. Other than that I am not experiencing any other pain anywhere else in my body.

Can anybody relate to this at all?

Yes I can relate to it strobers. Sometimes after an ejaculation it feels like all the semen did not come out. It feels stuck in there. And then the inflammation gets worse and worse and you are in the middle of a major flare up. Which is damn painful. I wish you the best of luck. It's tough having this problem. I have gotten some relief from taking enzymes. Naticor and serralone together. You take them on an emoty stomach 3 times a day. It takes about 2 to 3 weeks and you notice the inflammation getting better. But it doesn't work all the time. It helps but its no cure.

[strobers]

strobers , I can relate to your pain and frustration...
it has dramatically change my life!!!

I have decided to get of all those anxiety meds cause all they do is make me an addict. I'm trying other natural sources for instance Tryin2cope for his recipe on Glocasamine and MSM.
I'm really good with my diet although every day I discover something that provokes my pain.

I wish you the best in your search for relief. Please, keep us updated on your findings!!!

Good Luck!!!

Thanks Firestarter,

My doctor put me on Effexor and Klonopin. They are really low doses, 10 mg and .5 daily, but I feel crappy because I've been off of anxiety meds for more than 5 years and feel like I'm going backwards. I just started taking them today. The doctor feels that I've attached my anxiety to my bladder and have totally exacerbated my symptoms. That's the problem with having a history of anxiety. If you feel something is wrong physically, the first thing the doctor says is that it's all in your head.

I wish they would understand that it wasn't until two weeks after April 6th that I started getting anxious. The thing is I can't think of another human being alive who felt like voiding constantly, even after going, and wouldn't get anxious about it. It's tortures.

I wonder how many men who get this have a history of anxiety that makes them feel that much worse.

[strobers]

Yes I can relate to it strobers. Sometimes after an ejaculation it feels like all the semen did not come out. It feels stuck in there. And then the inflammation gets worse and worse and you are in the middle of a major flare up. Which is damn painful. I wish you the best of luck. It's tough having this problem. I have gotten some relief from taking enzymes. Naticor and serralone together. You take them on an emoty stomach 3 times a day. It takes about 2 to 3 weeks and you notice the inflammation getting better. But it doesn't work all the time. It helps but its no cure.

I'm so petrified of making things worse that I refuse to have sex. I just can't go through again that severe feeling of having to urinate and never being fullfilled. I would rather be celibate than live through that again. Right now it's mild/moderate and with the anxiety med controllable. Anything beyond this and I would be a major mess.

[.........*sigh*]

My doctor has told me that Marijuana is effective at relieving the symptoms. It acts as a good muscle relaxant and analgesic. I dunno if your states allow it but maybe you guys could ask yoru doctors. It's a hell of a lot better than opiods for painkillers and antidepressants.

[strobers]

My doctor has told me that Marijuana is effective at relieving the symptoms. It acts as a good muscle relaxant and analgesic. I dunno if your states allow it but maybe you guys could ask yoru doctors. It's a hell of a lot better than opiods for painkillers and antidepressants.

Believe it or not, marijuana makes me hallucinate and makes me paranoid. I haven't smoked it since back in the 70's. If it didn't I'd be looking for stash as we speak. Anything is better than feeling like this.

[jrn1]

I'm so petrified of making things worse that I refuse to have sex. I just can't go through again that severe feeling of having to urinate and never being fullfilled. I would rather be celibate than live through that again. Right now it's mild/moderate and with the anxiety med controllable. Anything beyond this and I would be a major mess.
IC naturally raises your stress level. It's painful and no one would be that cool and calm thinking about this pain. I get very stressed when I travel because I need to be close to a bathroom and when I am not I get very anxious. I had a bad flare up during a long trip once and it was awful awful awful. So I can relate to being anxious about IC and it's symptoms. If you never had IC you don't understand. And many, many Doctors don't understand.

[.........*sigh*]

Does anyone have that feeling where you are "aware" of your bladder/pelvic region?

[Tip and IBS]

Yes sigh,in my case it burn down there.

[strobers]

And I think that it exacerbates my symptoms. That's one of the reason I went on anxiety meds. I'm currently taking Klonopin .5 in the afternoon and Effexor in the morning. They keep me from going into a panic and a spiral of catastrophic thinking.

I just got done reading a book called, "Headache in the Pelvis" and I am going to start doing the streaching and relaxation exercises today. Unfortunately, I have had a anxiety disorder since my 20's, although it comes and goes depending on my circumstances. At this point, circumstances warrent that I get on them. I have hope that things will get better and pray every day for all of us that we will get thru this hell.

[gorrilaguy]

Does anyone out there have kidney pain alot when they hold it very long? I have been in a flare for quite some time, and it just seems to get worse and worse. Not sure what to do about it. I just recently got married, and had the most stressful job that only made things worse and worse. Well, I got fired. Not entirely sure why, but pretty sure it had to do with being and looking sick all the time. It wasn't an accounting job anyway, but now I'm left with the stress of being out of work with a new wife and upcoming doctor's bills that if we can't pay, they'll just take it directly out of my wife's check since she works for the hospital. Had a colonoscopy yesterday (terrible experience) that found absolutely nothing. so I'm sick to my stomach, alternating between constopation and diarrhea, and still only go about every 3-4 days. However, the night before my scope, I was quite regular. About every 10 minutes I'd have to evac that diarretic they make you drink. What a terrible and painful experience. Then they found nothing. so I get to fit the bill for that and they found nothing. However, when I went in there, my blood sugar was 42. So they put me on something to raise my blood sugar. I thought they'd take it off once it got high enough, but they kept it coming and by the time I got out, my blood sugar was well over 400. It came down by itself, thankfully, after a couple of hours. I now have one kideny that hurts, but I actually slept ok last night. didn't get up to pee 6-10 times, but my left kidney has been hurting all day. My bladder has shrunk and it doesn't take much to fill it up and back up into my kidneys (I assume). It's pretty painfull. I was doing so good, but I started talking with a naturopath and I've never been worse. I was sleeping an entire night, now I barely make it past the first hour of sleep. I need some help, and I havn't gotten it from modern or natural medicine. I know I'll only find help through God in this seemingly never ending flare-up. Now I have to ask... Has anyone else had an UPPER GI problem drastically effect their IC???

[strobers]

Does anyone out there have kidney pain alot when they hold it very long? I have been in a flare for quite some time, and it just seems to get worse and worse. Not sure what to do about it. I just recently got married, and had the most stressful job that only made things worse and worse. Well, I got fired. Not entirely sure why, but pretty sure it had to do with being and looking sick all the time. It wasn't an accounting job anyway, but now I'm left with the stress of being out of work with a new wife and upcoming doctor's bills that if we can't pay, they'll just take it directly out of my wife's check since she works for the hospital. Had a colonoscopy yesterday (terrible experience) that found absolutely nothing. so I'm sick to my stomach, alternating between constopation and diarrhea, and still only go about every 3-4 days. However, the night before my scope, I was quite regular. About every 10 minutes I'd have to evac that diarretic they make you drink. What a terrible and painful experience. Then they found nothing. so I get to fit the bill for that and they found nothing. However, when I went in there, my blood sugar was 42. So they put me on something to raise my blood sugar. I thought they'd take it off once it got high enough, but they kept it coming and by the time I got out, my blood sugar was well over 400. It came down by itself, thankfully, after a couple of hours. I now have one kideny that hurts, but I actually slept ok last night. didn't get up to pee 6-10 times, but my left kidney has been hurting all day. My bladder has shrunk and it doesn't take much to fill it up and back up into my kidneys (I assume). It's pretty painfull. I was doing so good, but I started talking with a naturopath and I've never been worse. I was sleeping an entire night, now I barely make it past the first hour of sleep. I need some help, and I havn't gotten it from modern or natural medicine. I know I'll only find help through God in this seemingly never ending flare-up. Now I have to ask... Has anyone else had an UPPER GI problem drastically effect their IC???


Since I posted the last time I have been feeling way better, although I'm nowhere near a 100%. I'm seeing a choirpractor two times per week to work on my back and I recently started seeing a P.T. trained in pressure point/myofacial techniques. She has been a Godsend. Today she found some major pressure points in my abdoman that she worked on and also did some massage in my pelvic floor, which she found very, very tight. There is no doubt in my mind that issues with the pelvic floor and associated muscles and nerves play a huge part in CPPS. I would suggest that you read "A Headach in the Pelvis" I mean really read it. Take notes. Assimilate what it says. Do the streaches, find a qualified P.T. who is trained in pressure point/myfacial techniques and get some treatment and do the relaxation exercises as outlined in the book. It will make a difference. I have GERD besides all my other problems and I honestly believe that the GERD is also being triggered by an overly tight and constricted pelvic area and the muscles that surround it. That is where I'm focusing my attention and it is making a difference.

[gorrilaguy]

This is strange, I think I'm getting to where I can't tell what's hurting. It felt like my bladder was hurting, but I'm not in a flare peeing every 10 minutes. It also hurts all the way accross my abdomen and it hurts to cough, laugh, or move, really. All this after a colonoscopy. I wonder if they missed something. It was funny, really. after the colonoscopy, he told me I could eat anything I wanted, that I was perfectly healthy.

[strobers]

I don't like most doctors, nor do I trust them. They have a specific purpose, to fix the human machine. That's how the majority of them see us. They take out organs, give out pills, and creams as a way to make the machine work right, but the problem is that they don't understand, the majority anyway, that everything in the human body works in tandem with everything else.

I went for a second opinion today regarding my medical issues and the doctor I consulted with had the same mentality as every other doctor I've seen. I have him my symptoms and auto*****lly it's either a bladder issue or a prostate issue. They just can't think outside the box.

I'm hoping and praying that my P.T. proves my theory, that a lot of what I'm suffering, and probably the majority of people with CPPS, IC, and all the other labels, is closely tied in with something not aligned in the body secondary to stress, tension, anxiety and trauma. I'm personally disgusted with the medical profession.

[CST]

Just wanted to say hello - I'm female, but it's been enlightening to read what the male victims of this horrible ailment go through, with your own types of symptoms and problems. When I was diagnosed, I was also told that it was rare for men to have this. However, I've since learned that anything a doctor says is "rare" often turns out to be not so rare. I take what doctors say with a grain of salt, that's for sure. I'm really glad several of you had wives who were looking out for your health and refusing the terp.
Sometimes all that stands between us and disaster is a caring loved one. I had a GREAT urologist for several years but moved away and I never found another one even remotely like him, so it's been frustrating. Doctors are a real trip, aren't they? lol.......but always remember there is support out here and you don't have to blindly accept any treatment until you research all the options. It's given me HUGE confidence when I go in to see doctors, and by god, I get respect because I usually know more than most of them do. If I don't, I leave, simple as that. Even if it means going without treatment, because sometimes that's better than the WRONG treatment that makes things worse. Stay strong guys.. some of us gals have been at this a long time, and there are ups and downs. Have faith that the researchers will ultimately figure all this out!

[Silverfox]

Strobers and CST, I agree with your thoughts,

My pain Doctor says that my pain is coming from within the nerve itself and this kind of nerve damage is more difficult to treat. Anywhere you have a nerve you can have pain. There are many sensory peripheral nerves (afferent nerves) in this part of the body and they are the ones that give you sense of touch, feeling of warm or cold, ticklishness and send pain messages to the brain when they are damaged. The problem is to find the underlying cause. There may be many different causes for this pain or discomfort. (search peripheral neuropathy)

When I was very ill and in severe pain, I didn't understand the Doctors didn't have any idea what they were doing. They were often very mean and cruel. They happily took all my money and my soul. They damaged my body permanately and felt no guilt. I am also very disgusted with the medical profession.

Strobers you are so right about this problem being "in tandem" an entire body systemic illness. I also believe that they will figure this out and they will do a better job of alleviating the pain and eventually healing the damage within the nerves. Damaged nerves do grow, but at an agonisingly slow rate.

Somewhere right now, a good Doctor has some answers as to the cause!

Keep your logic, listen to your own inner voice and have lots of hope!

Yes, be strong and support others too!

[.........*sigh*]

I agree some doctors are jerks and don't listen to what you say. I remember my first urologist I saw when I was 17 kept insisting that I had an STD. I told him I never had sex and ALL my urine cultures kept coming up negative. I told him I've been having this frequency and pubic discomfort for a couple months. Even after all that he kept saying it has to be an STD thats why you have these symptoms. So I ditched that guy and went to my new current urologist. He's amazing. Never insisted that I take antibiotics. Instead he put me on Elmiron immediatly and told me if I started having muscle pain or tension he could perscribe me Valium or some muscle relaxant.

[strobers]

Strobers and CST, I agree with your thoughts,

My pain Doctor says that my pain is coming from within the nerve itself and this kind of nerve damage is more difficult to treat. Anywhere you have a nerve you can have pain. There are many sensory peripheral nerves (afferent nerves) in this part of the body and they are the ones that give you sense of touch, feeling of warm or cold, ticklishness and send pain messages to the brain when they are damaged. The problem is to find the underlying cause. There may be many different causes for this pain or discomfort. (search peripheral neuropathy)

When I was very ill and in severe pain, I didn't understand the Doctors didn't have any idea what they were doing. They were often very mean and cruel. They happily took all my money and my soul. They damaged my body permanately and felt no guilt. I am also very disgusted with the medical profession.

Strobers you are so right about this problem being "in tandem" an entire body systemic illness. I also believe that they will figure this out and they will do a better job of alleviating the pain and eventually healing the damage within the nerves. Damaged nerves do grow, but at an agonisingly slow rate.

Somewhere right now, a good Doctor has some answers as to the cause!

Keep your logic, listen to your own inner voice and have lots of hope!

Yes, be strong and support others too!


Hi Silverfox,

I totally believe that all of our issues is first and foremost a nerve issue. However, I'm not sure if irritation and inflamation causes nerve issues, or nerve issues are caused by irritation and inflamation.

In my case my entire problem started right after having sex and like an idiot I did it again two more times because my urologist said that it was impossible that ejaculation and my frequentcy/urgency were related. I haven't had sex since early May because I'm too petrified of the outcome. For several weeks I was going to the restroom up to 20 times per day and still feeling like I hadn't gone. It was torture. I don't think doctors understand what that's like, unless they have the malady themselves. Otherwise, they just don't have the empathy needed to really treat people properly.

At this point I have good days and bad days. The last week I have been able to sleep straight through all night without getting up, which I thank the Lord for. I don't get excited when I have a good day because it just sets me up to get upset and anxious when the next day isn't as good. I just try to take things one day at a time and pray that there will be an eventual end to this. All we really have is hope.

I checked out "peripheral neuropathy" and there was some very interesting information. I think it is possible that after years of sexual activity I severely irritated/damaged my nerves, which in turn caused my other issues. The fact that the nerves of the prostate and bladder are so interconnected, and that all my issues started immidiately after sex, points in that direction. Unfortunatly, none of my doctors think that is possible, but my physical therapist feels it is quite probably.

[strobers]

Just wanted to say hello - I'm female, but it's been enlightening to read what the male victims of this horrible ailment go through, with your own types of symptoms and problems. When I was diagnosed, I was also told that it was rare for men to have this. However, I've since learned that anything a doctor says is "rare" often turns out to be not so rare. I take what doctors say with a grain of salt, that's for sure. I'm really glad several of you had wives who were looking out for your health and refusing the terp.

Sometimes all that stands between us and disaster is a caring loved one. I had a GREAT urologist for several years but moved away and I never found another one even remotely like him, so it's been frustrating. Doctors are a real trip, aren't they? lol.......but always remember there is support out here and you don't have to blindly accept any treatment until you research all the options. It's given me HUGE confidence when I go in to see doctors, and by god, I get respect because I usually know more than most of them do. If I don't, I leave, simple as that. Even if it means going without treatment, because sometimes that's better than the WRONG treatment that makes things worse. Stay strong guys.. some of us gals have been at this a long time, and there are ups and downs. Have faith that the researchers will ultimately figure all this out![/COLOR][/COLOR]


My wife is awesome and she really has been supportive. I don't know what I would do if I had to deal with this problem alone. I think I would go crazy.

I think men are often misdiagnosed with "prostitis" which is somewhat related to IC and CPPS in general. Actually, all the diseases of the pelvis from the standpoint of symptoms and very connected. I don't have pain per se, my issue is more like a sense of rawness and irritibility. Sitting down almost always causes me to want to void, even though sometimes certain positions make things better - sometimes worse. Bending down certain ways triggers that feeling too. I wish sometimes I could just reach inside of myself, scratch and everything would disappear. Wouldn't that be great?

I have lost all hope with doctors. I know some good ones must exist, but what the only medical professional that is keeping me hopeful is my physical therapist. She actually listens, asks questions, and spends some quality time with me. Our sessions last almost an hour and I feel like we are really making some progress. She has been a Godsend.

[Trying2Cope]

I have had IC for about..I don't know..2 1/2 to 3 years now. It's hard to believe. It seems a lot longer. For the first year or so, I just wanted to die, that's how much pain I was in. I spent a lot of long, painful nights either drugged up and suffering or crying into a pillow.

I'm still on the MSM/Glucosamine and I'm still in remission. I understand this doesn't work for everybody, I just thank God every day that it works for me, for now. I hope this continues, and I am thankful that this has helped others and that I was able to help them find some relief by sharing my story.

Another problem I had been going through for the past several months is low testosterone. Does anyone else have this? It seemed to come on suddenly, but now that I really think about it, I think my testosterone levels have probably been declining for the past few years. Symptoms are exhaustion, the strong desire to fall asleep after dinner, a "foggy" feeling in your head, loss of muscle, "man boobs", pot belly, crankiness and a feeling of anger all the time. I struggled terribly with this until just recently. I had been taking testosterone replacement therapy, but it is so horribly expensive. I switched to buying DHEA at Walmart because I could no longer afford the testosterone. I had read that DHEA helps the body produce testosterone. I'm not sure what my testosterone levels are these days, but I do know I feel much better and finally got my "mojo" back. My wife even commented that my skin has cleared up and I just plain look healthier.

Any other "low testers" with IC?

[Roxie2007]

Hey guys!
As reading through your posts I don't see that anyone is taking Freeze Dried Aloe Vera. I've had IC (and many other ailments) for many years and been using the Freeze Dried Aloe Vera for over 2 yrs now. It coats the inside the bladder and helps repair the lining. Y'all should give it a try for your IC. You can order it right here on this site, it's the Desert Harvest brand.

[strobers]

Since the last time I posted, I have been doing much better. I was getting frustrated at taking three steps forward and two steps back, but after accepting the fact that progress sometimes works like that and flowing with it, I seem to have been doing exponentially better.

I'm going to the restroom five to seven times per day and only waking up to use the restroom one night a week or so. I have bad days still, but the bad days are becoming less bad every week. In other words every week the severity of worst days declines every week.

I am no longer taking any types of anxiety medication and cut my dose of Emeral from 400 mgs to 200 mgs. After doing a lot of research, and reading what other people are doing, I started taking 2000 mg of Flax Seed Oil daily, 2000 mgs of Pumpkin Seed Oil daily, 1200 mg of Quercetin, 2,200 mgs of Glucosamine & MSN daily, Magnesium Glycinate, 800 mgs daily, and Pygeum & Saw Palmetto, 1,500 mgs daily. It really seems to be helping. I hate to take so many pills, but I rather do this than revist where I was before. No thanks.

If I have another week this good, I'm going to cut out the Emeral completely and just take the aforementioned supplements.

I also am doing the exercises that are described in "A Headache in the Pelvis" daily along with 1/2 hour of progressive relaxation. I'm also playing racquetball 3 to 4 times per week. I feel much more hopeful. If you haven't read the book, I highly recommend it. It has been a life preserver for me.

The only thing I haven't done, which I'm really starting to miss, is sex. That is what initially triggered everything and I'm petrified that if I act on my sexual feelings, which have been bubbling like lava lately, I'm going to go right back where I was when I wanted to just kill myself. My PT said I eventually will have to try it, but I'm just not willing to go there. I have looked high and low for information on chronic masturbation/frequent sex to see if it can cause nerve damage or strain, which in turn causes CPPS symptoms, but have not found anything. If any of you happen to know a study or can point me in the right direction, it would be appreciated. That's the only thing that isn't back to normal yet and that eventually I will have to deal with.

Other than that, this is the best I have felt in weeks and it's so nice to feel basically normal. I pray for all of you every day and I hope that eventually everyone will be pain/symptom free. Hang on to your hope. It's the one attribute that will keep you from going insane.

[strobers]

Just wanted to say hello - I'm female, but it's been enlightening to read what the male victims of this horrible ailment go through, with your own types of symptoms and problems. When I was diagnosed, I was also told that it was rare for men to have this. However, I've since learned that anything a doctor says is "rare" often turns out to be not so rare. I take what doctors say with a grain of salt, that's for sure. I'm really glad several of you had wives who were looking out for your health and refusing the terp.
Sometimes all that stands between us and disaster is a caring loved one. I had a GREAT urologist for several years but moved away and I never found another one even remotely like him, so it's been frustrating. Doctors are a real trip, aren't they? lol.......but always remember there is support out here and you don't have to blindly accept any treatment until you research all the options. It's given me HUGE confidence when I go in to see doctors, and by god, I get respect because I usually know more than most of them do. If I don't, I leave, simple as that. Even if it means going without treatment, because sometimes that's better than the WRONG treatment that makes things worse. Stay strong guys.. some of us gals have been at this a long time, and there are ups and downs. Have faith that the researchers will ultimately figure all this out!

That you had a good Uro. I am seriously thinking about switching GP's and getting a female doctor. From the stand point of bedside manner, listening skills, and empathy, female doctors just can't be beat. Every clinician I have worked with that has been female I have been very happy with. It seems liek they really listen to what I have to say. Every clinician who is male, I have been disappointed with. They talk down to me, are patronizing and condescending. It makes everything in my life pertaining to my problem, worse.

My PT is female and if it wasn't for her, I don't think I'd be doing anywhere near as well as I am now.

[strobers]

Hey guys!
As reading through your posts I don't see that anyone is taking Freeze Dried Aloe Vera. I've had IC (and many other ailments) for many years and been using the Freeze Dried Aloe Vera for over 2 yrs now. It coats the inside the bladder and helps repair the lining. Y'all should give it a try for your IC. You can order it right here on this site, it's the Desert Harvest brand.

To stay well I'll smoke cardboard, eat sand, anything that will keep me healthy. The last four months have made me realize how precious ones health is. I may try the product.

[IC_SUX2006]

hey guys, i was diagnosed with IC [after a cystoscopy in Summer of 2004] and prescribed Elmiron for probably the rest of my life. Wonder if any of you guys share any of my other symptoms? Burning prostate area, pressure in rectum, burning bladder sensation, especially while bladder is filling and sometimes the feeling of a rash down below? I have been living with this for the better part of 13 years and currently in a flare situation. Don't know what brought it on: something i drank, ate or stress/anxiety/nervousness [i'm an extremely nervous guy by nature]. once all these symptoms combine in unison it kicks my butt to a point where i am extremely upset, sad, depressed, hopelessness kicks in and really cannot sleep or function. The only time i experience relief is when i get some brief sleep. WHAT A WAY TO GO THRU LIFE! Any of you guys share these symptoms?????? The uro said what i am experiencing is "referred pain" from the IC. any of your uro's state the same thing? when i have periodic prostate exams, it is boderline torture, but uro says it's the IC and not a prostate issue. just wondering if anyone out here has any of these symptoms and what you guys do for flare relief???.......good luck to all, this is truly a debilitating condition....

[Trying2Cope]

hey guys, i was diagnosed with IC [after a cystoscopy in Summer of 2004] and prescribed Elmiron for probably the rest of my life. Wonder if any of you guys share any of my other symptoms? Burning prostate area, pressure in rectum, burning bladder sensation, especially while bladder is filling and sometimes the feeling of a rash down below? I have been living with this for the better part of 13 years and currently in a flare situation. Don't know what brought it on: something i drank, ate or stress/anxiety/nervousness [i'm an extremely nervous guy by nature]. once all these symptoms combine in unison it kicks my butt to a point where i am extremely upset, sad, depressed, hopelessness kicks in and really cannot sleep or function. The only time i experience relief is when i get some brief sleep. WHAT A WAY TO GO THRU LIFE! Any of you guys share these symptoms?????? The uro said what i am experiencing is "referred pain" from the IC. any of your uro's state the same thing? when i have periodic prostate exams, it is boderline torture, but uro says it's the IC and not a prostate issue. just wondering if anyone out here has any of these symptoms and what you guys do for flare relief???.......good luck to all, this is truly a debilitating condition....

Yep, been there...done that. I found that my flares were either triggered by stress or something in my diet. If you haven't yet, you should try to identify the foods and drinks that "trigger" your flares and avoid them like the plague. For me, it's MSG, and it used to also be peanuts, chocolate and spicy foods. Now I can eat pretty much whatever I want except anything with MSG. I take the glucosamine/MSM, which I mention in another post on this message board.

You could try taking an anti-depressant or something for the stress that might be triggering your flares. Short of that, you could take SAMe which kind of has the same effect, plus the benefits of MSM/glucosamine.

[strobers]

hey guys, i was diagnosed with IC [after a cystoscopy in Summer of 2004] and prescribed Elmiron for probably the rest of my life. Wonder if any of you guys share any of my other symptoms? Burning prostate area, pressure in rectum, burning bladder sensation, especially while bladder is filling and sometimes the feeling of a rash down below? I have been living with this for the better part of 13 years and currently in a flare situation. Don't know what brought it on: something i drank, ate or stress/anxiety/nervousness [i'm an extremely nervous guy by nature]. once all these symptoms combine in unison it kicks my butt to a point where i am extremely upset, sad, depressed, hopelessness kicks in and really cannot sleep or function. The only time i experience relief is when i get some brief sleep. WHAT A WAY TO GO THRU LIFE! Any of you guys share these symptoms?????? The uro said what i am experiencing is "referred pain" from the IC. any of your uro's state the same thing? when i have periodic prostate exams, it is boderline torture, but uro says it's the IC and not a prostate issue. just wondering if anyone out here has any of these symptoms and what you guys do for flare relief???.......good luck to all, this is truly a debilitating condition....

You have been suffering way too long. Don't depend so much on your Uro. He knows only what Uro's know. If I had been suffering for 13 years with the same problem, I would have offed myself. You should give Dr. David Wise a call. He's the Director of the Stanford Protocol Program at Stanford. He has a special program designed to help people who suffer this affliction. He suffered from CPPS for almost 25 years. It's an expensive program $3,800 or so, but it's helped many, many people. For as long as you have been suffering from this, I would definitily give him a call. He'll ask you a series of questions and based on your answers he can register you for the protocol. It's last six days. I was going to do it myself, in fact I talked to him on the phone, but I have been able to get better on my own using Dr. Wise's protocols as outlined in his book, "Headache in the Pelvis." It's an excellent book and really opened up my eyes to a lot of things.

[IC_SUX2006]

thanks for the advice. another thing that doesn't help is that i sit all day in front of a computer.....ouch, especially during flares. when u guys flare, is there a normal flare period? 3 days 5 days a couple weeks? i think another part of the problem is when in a flare, your natural reaction is to constantly focus on the discomfort, WHICH MAKES THE UNCOMFORTABILITY WORSE! last time at uro, he cut me a break and didn't examine prostate [thank god] but sent me for PSA blood test which was fine. i'm drinking so much water it's coming out of my ears; thinking it will flush the flare away, but i'm going on my second week now! single and getting to know a new girl and how do u bring this up? u can't! i would just like to know what it feels like to be normal down below just one day......good luck to all...........

[strobers]

thanks for the advice. another thing that doesn't help is that i sit all day in front of a computer.....ouch, especially during flares. when u guys flare, is there a normal flare period? 3 days 5 days a couple weeks? i think another part of the problem is when in a flare, your natural reaction is to constantly focus on the discomfort, WHICH MAKES THE UNCOMFORTABILITY WORSE! last time at uro, he cut me a break and didn't examine prostate [thank god] but sent me for PSA blood test which was fine. i'm drinking so much water it's coming out of my ears; thinking it will flush the flare away, but i'm going on my second week now! single and getting to know a new girl and how do u bring this up? u can't! i would just like to know what it feels like to be normal down below just one day......good luck to all...........

Try sitting down on a rolled up towel so that the weight is evenly distributed on your butt and there is no pressure on your perinium area. Also get up frequently to walk around and stretch. One thing that you can do is find a wall and squat down so that your butt is almost touching the ground, but not quite. Keep your back against the wall. Make sure you have your feet are fairly wide apart. This streaches out and relaxes the pelvic floor.

You can flush a flare away. A flare is basically inflammation and contraction of the pelvic muscles, among other areas. Soak in warm water will help, yoga streatches will help, and many herbs will help. You have to experiment.

[yoink1515]

Here is my story:

Back on November of '06, I was lifting a Christmas tree in my home and felt sudden, sharp, debilitating pain in my lower back. It was so painful I had difficulty straightening up. I took three days off of work for complete bedrest, lots of advil, and by the fourth day I seemed better. I never saw an MD.

The pain never really completely went away from that injury, but it was manageable.

Around 4 months later, I still hadn't gotten 100% better, I went to see my primary care physician, and told him that I suffered from "moderate pain in the lower back, mostly on the left side, worse while sitting, better while standing or laying down. I also have tingling and numbness in my left leg while sitting (sciatica)"

My PCP recommended an MRI. I got the MRI of my lumbar region and it showed a large (8mm) extruded disk at the L4-L5 level. My PCP referred me to an Osteopathic surgeon. I had a consult with the osteopath at the beginning of march of 07.

The osteopath said we could try surgery or physical therapy. Since the pain was not debilitating anymore, and really didn't interfere with my life, I opted for physical therapy.

The physical therapy was fine for several weeks; I thought I was experiencing minor improvements, when on march 27th of this year I had a sudden onset of a very troubling and traumatic symptom: Out of nowhere I suddenly had nearly continuous urinary frequency. The strong, persistant urge to urinate (even with an empty bladder) plagued me during every minute of every waking hour. I couldn't eat. I couldn't concentrate. It was torture. It just came on one day and didn't stop.

I saw a urologist and he tested my urine and said it was clean: no infections. He gave me some Detrol LA which did not help at all. My urologist suspected that this urinary frequency was relating to my back injury. Since I didn't have any pain or noctural frequency problems, he ruled out Interstitial Cystitus (AT THE THAT TIME.)

I consulted with my Osteopath and he too agreed this could be relating to some sort of pinched or pressed nerve that leads to the bladder. We scheduled disk surgery ASAP. On April 2nd, I had the disk surgery...I can't remember the procedure but the surgeon said he basically "removed the part of the disk that had become extruded" but he did not touch the disk. He also noted that my L4-L5 disk appeared to be degenerating. He said I am suffering from "degenerative disk disease" there and that led to the extruded disk.

The good news is that the back pain and leg tingling vanished...but the bad news is that the urinary frequency did NOT. Since then, I have seen four urologists, none of them can explain why I have urinary frequency. All of them think this is related to my back. My osteopath DIDN'T think it was related to my back because he said after he removed the pressure from the extrusion everything looked fine. He thinks this could be IC.

My post-surgery physical therapist thinks it could be Pelvic Floor Dysfunction brought on my the back injury. My acupuncturist thinks it's a pinched nerve in my back at the L4-L5 level.

One Urologist recently (last month) thought it COULD be IC, so he prescribed me Elmiron (100 mg, 3 times a day). Not sure if it's doing anything yet.

Any ideas on what this could be? Could an L4-L5 injury affect nerves to the bladder? If so, how does one treat that (especially if I've already had surgery to fix the extruded disk problem)? Should I see a neurologist? I have read that sciatica can affect the detrusor muscle in the bladder and cause urinary frequency. Vesicare did not help me at all, and Elmiron (that I'm taking in case it IS interstitial cystitis) may or may not be helping. Doesn't it take like...6 months to work?

[strobers]

Here is my story:

Back on November of '06, I was lifting a Christmas tree in my home and felt sudden, sharp, debilitating pain in my lower back. It was so painful I had difficulty straightening up. I took three days off of work for complete bedrest, lots of advil, and by the fourth day I seemed better. I never saw an MD.

The pain never really completely went away from that injury, but it was manageable.

Around 4 months later, I still hadn't gotten 100% better, I went to see my primary care physician, and told him that I suffered from "moderate pain in the lower back, mostly on the left side, worse while sitting, better while standing or laying down. I also have tingling and numbness in my left leg while sitting (sciatica)"

My PCP recommended an MRI. I got the MRI of my lumbar region and it showed a large (8mm) extruded disk at the L4-L5 level. My PCP referred me to an Osteopathic surgeon. I had a consult with the osteopath at the beginning of march of 07.

The osteopath said we could try surgery or physical therapy. Since the pain was not debilitating anymore, and really didn't interfere with my life, I opted for physical therapy.

The physical therapy was fine for several weeks; I thought I was experiencing minor improvements, when on march 27th of this year I had a sudden onset of a very troubling and traumatic symptom: Out of nowhere I suddenly had nearly continuous urinary frequency. The strong, persistant urge to urinate (even with an empty bladder) plagued me during every minute of every waking hour. I couldn't eat. I couldn't concentrate. It was torture. It just came on one day and didn't stop.

I saw a urologist and he tested my urine and said it was clean: no infections. He gave me some Detrol LA which did not help at all. My urologist suspected that this urinary frequency was relating to my back injury. Since I didn't have any pain or noctural frequency problems, he ruled out Interstitial Cystitus (AT THE THAT TIME.)

I consulted with my Osteopath and he too agreed this could be relating to some sort of pinched or pressed nerve that leads to the bladder. We scheduled disk surgery ASAP. On April 2nd, I had the disk surgery...I can't remember the procedure but the surgeon said he basically "removed the part of the disk that had become extruded" but he did not touch the disk. He also noted that my L4-L5 disk appeared to be degenerating. He said I am suffering from "degenerative disk disease" there and that led to the extruded disk.

The good news is that the back pain and leg tingling vanished...but the bad news is that the urinary frequency did NOT. Since then, I have seen four urologists, none of them can explain why I have urinary frequency. All of them think this is related to my back. My osteopath DIDN'T think it was related to my back because he said after he removed the pressure from the extrusion everything looked fine. He thinks this could be IC.

My post-surgery physical therapist thinks it could be Pelvic Floor Dysfunction brought on my the back injury. My acupuncturist thinks it's a pinched nerve in my back at the L4-L5 level.

One Urologist recently (last month) thought it COULD be IC, so he prescribed me Elmiron (100 mg, 3 times a day). Not sure if it's doing anything yet.

Any ideas on what this could be? Could an L4-L5 injury affect nerves to the bladder? If so, how does one treat that (especially if I've already had surgery to fix the extruded disk problem)? Should I see a neurologist? I have read that sciatica can affect the detrusor muscle in the bladder and cause urinary frequency. Vesicare did not help me at all, and Elmiron (that I'm taking in case it IS interstitial cystitis) may or may not be helping. Doesn't it take like...6 months to work?

One thing you should try that you didn't mention is go to a good choirpractor. When I started with my problem, I made an appointment with one who x-rayed my back. We looked at the X-rays together and it was obvious that I had a misaligned back and compressed vertebrae in the lower part of my back. I've been seeing him weekly since April and in conjunction with my PT, I have been feeling almost excellent. Try it out and let us know what happens. I don't think you have IC at all based on the precedents, but a trauma to the back can often times cause PFD (pelvic floor dysfunction) Have your PT check you our for trigger points inside and outside. Besides these two things I would look into trying some natural non-prescription, holistic type of supplement. Read this whole thread and you'll see a bunch of them. Start with a couple and then gradually add on more.

Based on what you said, there seems little doubt that this issue your having was precipitated by your back injury. Good luck.

[yoink1515]

Thanks strobers,

I'm so confused if I have IC or not. I mean, some symptoms I have are indicative of IC:
1) Frequency during all waking hours
2) Occasional strange burning sensations in the pelvis
3) Occasional weird pains in the pelvis
4) Voiding so frequently that there is very little urine each time
5) POSSIBLE trigger foods for pain / burning like spicy foods, caffeine. (I'm not sure if this is true or not.)
6) I THINK suppliments like Aloe pills (mentioned on this site) and drugs like Elmiron help me. Could just be placebo effect.

Other things that tell me that I don't have IC:
1) I sleep totally through the night...I never wake up to go to the bathroom. Sometimes 9 hours or more!
2) Happened in conjunction with my back injury.
3) This one is weird: When I feel like I have to make a bowel movement...ALL FREQUENCY / PAIN DISAPPEARS! It's SOOOO WEIRD. When I have that "I gotta go take a number 2" feeling, I feel totally normal in the pelvis. No frequency / burning / pain. It's such a relief! Then minutes after the bowel movement is over, the frequency comes back. This tells me it MUST be something neurological / muscular
4) I really don't ever have "urgency". I never feel like "OMG I GOTTA GO RIGHT NOW OR I'M GONNA HAVE AN ACCIDENT." It's always just like...a constant, sustained pressure.

These things confuse me, and they confuse my urologist(s). I haven't had a cyto / hydro yet. I'm wondering, if I've been taking Elmiron, would that skew the results of a cyto / hydro if I had it done?

Thanks for all the advice strobers. Hearing info from others makes me feel less alone / worried / confused. I feel better just reading posts here.

I wonder if I just have PFD stemming from my back injury?

[strobers]

Thanks strobers,

I'm so confused if I have IC or not. I mean, some symptoms I have are indicative of IC:
1) Frequency during all waking hours
2) Occasional strange burning sensations in the pelvis
3) Occasional weird pains in the pelvis
4) Voiding so frequently that there is very little urine each time
5) POSSIBLE trigger foods for pain / burning like spicy foods, caffeine. (I'm not sure if this is true or not.)
6) I THINK suppliments like Aloe pills (mentioned on this site) and drugs like Elmiron help me. Could just be placebo effect.

Other things that tell me that I don't have IC:
1) I sleep totally through the night...I never wake up to go to the bathroom. Sometimes 9 hours or more!
2) Happened in conjunction with my back injury.
3) This one is weird: When I feel like I have to make a bowel movement...ALL FREQUENCY / PAIN DISAPPEARS! It's SOOOO WEIRD. When I have that "I gotta go take a number 2" feeling, I feel totally normal in the pelvis. No frequency / burning / pain. It's such a relief! Then minutes after the bowel movement is over, the frequency comes back. This tells me it MUST be something neurological / muscular
4) I really don't ever have "urgency". I never feel like "OMG I GOTTA GO RIGHT NOW OR I'M GONNA HAVE AN ACCIDENT." It's always just like...a constant, sustained pressure.

These things confuse me, and they confuse my urologist(s). I haven't had a cyto / hydro yet. I'm wondering, if I've been taking Elmiron, would that skew the results of a cyto / hydro if I had it done?

Thanks for all the advice strobers. Hearing info from others makes me feel less alone / worried / confused. I feel better just reading posts here.

I wonder if I just have PFD stemming from my back injury?

What you described in #3 is EXACTLY how I was feeling when I wasn't doing well. I actually would purposely not have a bowel movement for as long as possible just to have a sense of relief. I've lived this already and I can tell you that you don't have IC. Yes, foods can trigger urgency and increase frequency, however, this isn't because there is something wrong with your bladder, it's because you're pelvic muscles are taut to the point that they are affecting the nerves around them. Remember that there are more nerves in your pelvis more than any other part of your body. I wasn't there when you hurt your back, but I can surmise that you pulled something out of alignment; it could be one thing or a multitude of things; spine, muscle, ligament, it's impossible to know. However, this is the precedent that threw everything else out of wack. People don't realize how balanced everything has to be in the body for it to work right. Do a Google search on CPPS or Chronic Pelvic Pain Syndrome. You will find some incredible information.

Believe it or not, my problem started after ejaculating. My doctors refused to believe it, but my PT thinks that excessive sex/masturbation over the course of decades triggered my already tight and short pelvic floor. All it took was one major orgasm and I got sick. I was told I had LUDE, which is a permeation of the bladder walls. That was a BS call. I have nothing of the sort.

My PT, who is trained in myo-facial/trigger point therapy found a mass of trigger points all over my lower abdomen on my left side of my body. Her theory is that I developed these over the course of several years, maybe decades from stress. These trigger points are tightly wound up bands of muscle that she has been working out every week in therapy. I was living with them with obviously no problem, but I crossed the threshold by over stimulating my pelvic floor, which in turn caused my urgency/frequency issues. Every week I have gotten better and better and there is no doubt in my mind that my trigger points/tight pelvic floor were the culprits that caused this problem in conjunction with other physical and mental stressers.

Without knowing you I would venture to guess that you are a Type A personality who tends to worry a lot about things, tends to be somewhat pessimistic, and is prone to anxiety. You may also have a stressful job, which requires a lot of sitting. How close am I?

My advice. See a PT who is trained in trigger point therapy and have her do an evaluation on you. Get a female PT if you can. They are better listeners. Also, see a good chiropractor. Between the both of them you will get some relief.

Foods can and will trigger your symptoms, not because you have IC, but because there is a high level of inflammation going on in your pelvic area and back. This inflammation over sensitizes the nerves in the bladder lining, which in turn make it much more sensitive to acidic foods. I still can't drink orange juice because I start getting that horrible sense of urgency and frequency. Vinegar and very spicy food do the same thing. You may feel discomfort in other areas of the pelvic area, giving you symptoms that can be described as a raw, burning, hot sensation in the the general vicinity of the pelvis. I can feel mine when I bend down a certain way.

If you are comfortable doing so, invest in an anal dildo. It's embarrassing to go into a sex shop, but hey it's either be miserable or be uncomfortable. Just leave it inside yourself for a couple of minutes at a time. Make sure you use KY. I tried this after noticing that needing to take a bowel movement brought me relief. I figured putting something in the opposite way would give me the same relief, which it did. However, the next day I felt worse.

Be prepared to take a step back for every two steps forward you make. It's just the way things go. You will get better. As you work out the kinks in your body and realign your body it will begin readjusting itself. You will have good days and bad days, but eventually you will have more good than bad. Trust me on this.

Also, start taking some inflammatory supplements and buy the book, "A Headache in the Pelvis" 4th edition and read it cover to cover. Hope you feel better soon.

[yoink1515]

Strobers,

THANK YOU SO MUCH! You are a GODSEND. Both me and my girlfriend were reading your post at the same time and we were so excited we started to yell. We both stood up and started yelling the words of your post. You are the FIRST person in four months to MAKE ANY SENSE TO ME. YOU are the only one who could explain what is going on with me. You have no idea what an immense sense of relief, joy, hope and happiness it is to FINALLY have someone understand what's going on. You have earned a checkmark in heaven today, sir, for taking the time to write your post. Thank you from the bottom of my heart.

I have found a PT that specializes in Pelvic Floor Disorder therapy. That's the good news. The bad news is I can't get in to see her until August 14. :mad: So, in the mean time is there anything that you can suggest I do at home to help? I've discovered that my hamstrings and my groin muscles (the insides of my thighs near the crotch) are SUPER tight. I've been trying to flex them out slowly. I have some Soma (a muscle relaxant) left over from my back surgery that I didn't use. I'm taking one before bedtime (they make you super sleepy). I am taking 30 minute hot baths before bed, too. Can you recommend any other at home-remedies for me? Any little tips or tricks would be greatly appreciated.

Oh, and by the way, you NAILED it when you came to my occupation. I'm an Assignment Editor for a local TV news station. I'm basically sitting 8 hours a day, and there's an old joke among assigment editors..."The three most stressful jobs on the planet are: (In order of stress) 1. Air Traffic Controller, 2. E.R. doctor, 3. Assignment Editor. But at least when Assignment Editors screw up, nobody dies (except the Assignment Editor when his boss kills him.)" So yes, I have a SUPER stressful job. Someone is always ****** at me for something, because my job is basically to tell people "No, you can't have this, or NO you can't have that." (There are good parts to the job though. Really. :) )

Anyways, again, thank you so much. I think you saved my life. :bow: :bow: :bow:

[Roxie2007]

Hey guys,
There's a great book by Bonnie Prudden called Pain Erasure that shows all the trigger points of the body. If you'd got a wife or g/f to help you it would help to locate the points and see which ones hurt. My husband did this for me when I was having such terrible IC problems. After we located the ones in my lower back he used a heat/vibrator on them for 30 min at a time and then rubbed Biofreeze on them and then I'd do some slow stretches for 10 to stretch out those muscles. I'm doing great now......but ever so often those muscles tighten up. Now I recognize the pain when it starts....kind of a twinge feeling and we start the routine over for a week. It works great...and cheaper!

[strobers]

Strobers,

THANK YOU SO MUCH! You are a GODSEND. Both me and my girlfriend were reading your post at the same time and we were so excited we started to yell. We both stood up and started yelling the words of your post. You are the FIRST person in four months to MAKE ANY SENSE TO ME. YOU are the only one who could explain what is going on with me. You have no idea what an immense sense of relief, joy, hope and happiness it is to FINALLY have someone understand what's going on. You have earned a checkmark in heaven today, sir, for taking the time to write your post. Thank you from the bottom of my heart.

I have found a PT that specializes in Pelvic Floor Disorder therapy. That's the good news. The bad news is I can't get in to see her until August 14. :mad: So, in the mean time is there anything that you can suggest I do at home to help? I've discovered that my hamstrings and my groin muscles (the insides of my thighs near the crotch) are SUPER tight. I've been trying to flex them out slowly. I have some Soma (a muscle relaxant) left over from my back surgery that I didn't use. I'm taking one before bedtime (they make you super sleepy). I am taking 30 minute hot baths before bed, too. Can you recommend any other at home-remedies for me? Any little tips or tricks would be greatly appreciated.

Oh, and by the way, you NAILED it when you came to my occupation. I'm an Assignment Editor for a local TV news station. I'm basically sitting 8 hours a day, and there's an old joke among assigment editors..."The three most stressful jobs on the planet are: (In order of stress) 1. Air Traffic Controller, 2. E.R. doctor, 3. Assignment Editor. But at least when Assignment Editors screw up, nobody dies (except the Assignment Editor when his boss kills him.)" So yes, I have a SUPER stressful job. Someone is always ****** at me for something, because my job is basically to tell people "No, you can't have this, or NO you can't have that." (There are good parts to the job though. Really. :) )

Anyways, again, thank you so much. I think you saved my life. :bow: :bow: :bow:

I'm glad I can help. I just believe that doctors only know what they know. It's our responsibility as consumers to find out what's wrong with us based on exhaustive investigation and seek courses of treatment based on what we learn. The 2 Uros I saw were about as helpful as an empty cat food can.

Until you see your PT, buy the book I told you about and read it cover to cover. You will see yourself all over it. In the middle of the book there are exercises that you can use to stretch the pelvic floor. Do them religiously every day. Also, go on-line and find a copy of Progressive Relaxation & Autogenic Training by Carolyn McManus, PT, MA MS. You won't totally recover until you learn how to relax your whole body and pelvic floor. This is an excellent CD and I heartily recommend it. Do this every day.

Stay busy and don't let your mind focus on your bladder. The more you think about it the more you will exacerbate your symptoms.

Stay celibate for a while if you aren't already. Orgasms can really make things worse. They further constrict the pelvic floor. It did with me anyway. Until I'm completely well, I am refraining from sex. It's hard, but I rather be celibate than feel the way I was feeling before I got a handle on everything.

Buy the inflammatories listed on this thread. They are very important.

After all of this is over you have to make some serious life changes if you don't want a repeat of your symptoms.

I'm going to Knott's Berry Farm with my wife today. Go and enjoy your weekend too.

[elitynski]

I'm really not sure if I would have IC. My biggest thing is I have some urge to urinate but now not all the time. For instance here was my day

1) When I woke up and was still lying in bed I had to pee off and on - for the first couple hours - maybe going to the bathroom every 45 mins. However, this could be related to my sleep apnea.

2) When I was driving on the way to a hotel (I was the passenger) I felt more discomfort kind of like I might need to pee; however, driving home from the hotel I didn't feel the need to pee as strongly as I did when I was driving there. Although I was still mildly aware of the feeling like I might want to urinate.

3) When I was at the hotel for 3+ hours I only peed once at the hotel - the urine felt a little acidic but I didn't know if that equates to painful urination. I wasn't like in any excruciating pain. However, while I was there I did feel some urging to pee but nothing that would make me run to the bathroom. I get terribly confused about frequency cause I'm not running to the bathroom frequently even though I feel some discomfort because of my awareness of sort of needing to pee. But I kind of hold it until I feel the need to REALLY go to the bathroom.

4) I talked to one of the URO's at my clinic the other night and he said the semi urge to urinate frequently was more symptomatic of prostatitis and he thinks it'll simply burn itself out in a couple of weeks or months.

5) When I sleep at night - I don't really get up at all.

6) Laying on my back makes my feelings of having to urinate a little more pronounced than laying on my side.

7) Some people talk about burning in their rectum but again I don't know what the means - sometimes I get a feeling in the rectal area of what it's like after you've passed (via Bowel movement) a spicier mexican meal. There isn't this incredible burning sensation - just maybe the feeling after you get after a BM where you passed a meal that was a little spicy.

8) The weirdest thing is that when I get an erection - a lot of the other symptoms seem to go away.

At this point I have been on CIPRO for 3 weeks (and Detrol for a week - which did nothing). I'm going to wait a couple more weeks and see what happens.

[strobers]

I'm really not sure if I would have IC. My biggest thing is I have some urge to urinate but now not all the time. For instance here was my day

1) When I woke up and was still lying in bed I had to pee off and on - for the first couple hours - maybe going to the bathroom every 45 mins. However, this could be related to my sleep apnea.

2) When I was driving on the way to a hotel (I was the passenger) I felt more discomfort kind of like I might need to pee; however, driving home from the hotel I didn't feel the need to pee as strongly as I did when I was driving there. Although I was still mildly aware of the feeling like I might want to urinate.

3) When I was at the hotel for 3+ hours I only peed once at the hotel - the urine felt a little acidic but I didn't know if that equates to painful urination. I wasn't like in any excruciating pain. However, while I was there I did feel some urging to pee but nothing that would make me run to the bathroom. I get terribly confused about frequency cause I'm not running to the bathroom frequently even though I feel some discomfort because of my awareness of sort of needing to pee. But I kind of hold it until I feel the need to REALLY go to the bathroom.

4) I talked to one of the URO's at my clinic the other night and he said the semi urge to urinate frequently was more symptomatic of prostatitis and he thinks it'll simply burn itself out in a couple of weeks or months.

5) When I sleep at night - I don't really get up at all.

6) Laying on my back makes my feelings of having to urinate a little more pronounced than laying on my side.

7) Some people talk about burning in their rectum but again I don't know what the means - sometimes I get a feeling in the rectal area of what it's like after you've passed (via Bowel movement) a spicier mexican meal. There isn't this incredible burning sensation - just maybe the feeling after you get after a BM where you passed a meal that was a little spicy.

8) The weirdest thing is that when I get an erection - a lot of the other symptoms seem to go away.

At this point I have been on CIPRO for 3 weeks (and Detrol for a week - which did nothing). I'm going to wait a couple more weeks and see what happens.

You are wasting your time on anti-biotics. Doctors give anti-biotics even when there is no clinical indication to do so because they don't know how to help you and the only thing they know how to do is prescribe pills and take out organs. Besides being a waste of time anti-biotics not only kill "bad" bacteria, they kill good bacteria too. Uro's are cluess in regards to CPPS/IC and everything related. Read the posts and follow the advice of the people who have been down the river with CPPS/IC and have lived to tell about it.

Open your mind, be open to change, trust yourself, know your body, experiment and stay away from doctors.

[GoldSeals]

I'm really not sure if I would have IC. My biggest thing is I have some urge to urinate but now not all the time. For instance here was my day

1) When I woke up and was still lying in bed I had to pee off and on - for the first couple hours - maybe going to the bathroom every 45 mins. However, this could be related to my sleep apnea.

2) When I was driving on the way to a hotel (I was the passenger) I felt more discomfort kind of like I might need to pee; however, driving home from the hotel I didn't feel the need to pee as strongly as I did when I was driving there. Although I was still mildly aware of the feeling like I might want to urinate.

3) When I was at the hotel for 3+ hours I only peed once at the hotel - the urine felt a little acidic but I didn't know if that equates to painful urination. I wasn't like in any excruciating pain. However, while I was there I did feel some urging to pee but nothing that would make me run to the bathroom. I get terribly confused about frequency cause I'm not running to the bathroom frequently even though I feel some discomfort because of my awareness of sort of needing to pee. But I kind of hold it until I feel the need to REALLY go to the bathroom.

4) I talked to one of the URO's at my clinic the other night and he said the semi urge to urinate frequently was more symptomatic of prostatitis and he thinks it'll simply burn itself out in a couple of weeks or months.

5) When I sleep at night - I don't really get up at all.

6) Laying on my back makes my feelings of having to urinate a little more pronounced than laying on my side.

7) Some people talk about burning in their rectum but again I don't know what the means - sometimes I get a feeling in the rectal area of what it's like after you've passed (via Bowel movement) a spicier mexican meal. There isn't this incredible burning sensation - just maybe the feeling after you get after a BM where you passed a meal that was a little spicy.

8) The weirdest thing is that when I get an erection - a lot of the other symptoms seem to go away.

At this point I have been on CIPRO for 3 weeks (and Detrol for a week - which did nothing). I'm going to wait a couple more weeks and see what happens.


It sounds to me like you have an enlarged prostate.This could cause an incomplete emptying of the bladder.That would explain the frequent urge to urinate.You may need further tests if it gets any worse.Your medical provider could refer you to a specialist.Believe me, you would know if you had IC right now.
GoldSeals

[ouch_a_lot]

I was diagnosed with IC in Nov 2007 from a cysto with hydro. They found glumerations on my bladder wall. Interestingly they only found a few and said I suffer from mild IC. I dont have any pain in my lower back or pre or post sex. My main symptom (now) is a pain in the bladder and frequency.

The hydro absolutely nearly tipped me over the edge in pain. I was in hospital for over a week drugged up to the eyeball. To be honest I believe it has damaged my bladder further and im pretty upset. The uro said I was a mystery patient, as I shouldnt be feeling such pain from only a few glumerations, he said my bladder was pretty healthy. It drained nicely and held a good capacity.

Ive read a lot about pressure points in this thread, however I believe these are more focused to the pain generated from the prostate. Ive had my prostate checked, both from the DRE and a scan. They found nothing wrong, nor was the DRE unconfortable.

Im currently taking cystoprotek but not having much luck, its been only five or six weeks so im hanging out for some improvement.

I just wanted to share my story so far. Been real down about the entire experience but feeling hopeful I will find something to get rid of this pain and frequency.

Before the hydro I had more of a pressure feeling in my bladder, rather than pain.

I have a really stressful job in a major bank and sit chained to my desk for hours on end. Im wondering if this is part of my problem.

Anyway, my uro has said I will possibly just grow out of it, I find this hard to believe and he just wanted to get me out of his office.

I just want the pain to go away and get my life back to normal, play with the kids again, be in a good mood for once.

As someone said on a previous thread, I wish i could reach in, change a few things round, some new memory chip or something, and feel better.

Thanks Ouch.

[GoldSeals]

I was diagnosed with IC in Nov 2007 from a cysto with hydro. They found glumerations on my bladder wall. Interestingly they only found a few and said I suffer from mild IC. I dont have any pain in my lower back or pre or post sex. My main symptom (now) is a pain in the bladder and frequency.

The hydro absolutely nearly tipped me over the edge in pain. I was in hospital for over a week drugged up to the eyeball. To be honest I believe it has damaged my bladder further and im pretty upset. The uro said I was a mystery patient, as I shouldnt be feeling such pain from only a few glumerations, he said my bladder was pretty healthy. It drained nicely and held a good capacity.

Ive read a lot about pressure points in this thread, however I believe these are more focused to the pain generated from the prostate. Ive had my prostate checked, both from the DRE and a scan. They found nothing wrong, nor was the DRE unconfortable.

Im currently taking cystoprotek but not having much luck, its been only five or six weeks so im hanging out for some improvement.

I just wanted to share my story so far. Been real down about the entire experience but feeling hopeful I will find something to get rid of this pain and frequency.

Before the hydro I had more of a pressure feeling in my bladder, rather than pain.

I have a really stressful job in a major bank and sit chained to my desk for hours on end. Im wondering if this is part of my problem.

Anyway, my uro has said I will possibly just grow out of it, I find this hard to believe and he just wanted to get me out of his office.

I just want the pain to go away and get my life back to normal, play with the kids again, be in a good mood for once.

As someone said on a previous thread, I wish i could reach in, change a few things round, some new memory chip or something, and feel better.

Thanks Ouch.


Hi,You may want to try the different medications available for ic.You can also change you diet and see if that helps.There is an ic diet plan on this website.
Im still convinced that these are only temporary remedies that only lead to an eventual complete bladder removal.Its worth a try to experiment with the diet and medications first.
GoldSeals

[tmog]

3.) Sensation of orgasm without ejaculation

This is a symptom that I want. How do you get it, Alex? Did you have to do something? Not had the throbbing feeling either but I have all the others. Currently, I'm not on any meds. I tried the Elavil when I was diagnosed a few years ago but it gave me panic attacks. What does the ditropan xl do for you?



Name: Alex
Age: 25
Diagnosed: About 2 months ago
Current Meds: Elmiron (3 times a day)
Elavil (1 before I go to bed)
Ditropan XL (1 in the morning)



In the beginning (Pre without Meds):
1.) Constantly feeling like I had to pee even after peeing. Very strong intense urges to pee.
2.) Weak stream
3.) Sensation of orgasm without ejaculation
4.) Peeing at least 10-20 x a day

Currently (Post with Meds):
1.) I still have a pretty weak stream compared to before. Sometimes I have to push to get the remainder of the urine out.
2.) Sometimes after orgasms the head of my penis has a throbbing sensation.
3.) Peeing about 5-7 x a day

Luckily whenever I had/have the peeing sensation I am able to pee. Sometimes it takes a minute but I eventually get it out. I've also heard accounts of pain during ejaculation but haven't had that sensation. I never wake up at night to pee and am able to sleep fine during the night. In the morning I always have to pee. Since the meds my symptoms have greatly improved. I don't even mind peeing so much I'm just glad to have the "feeling like I have to pee" sensation gone. I have also never wet myself. I have been able to hold it even though I have felt acouple of times that I was going to explode.

[jrn1]

Hi,You may want to try the different medications available for ic.You can also change you diet and see if that helps.There is an ic diet plan on this website.
Im still convinced that these are only temporary remedies that only lead to an eventual complete bladder removal.Its worth a try to experiment with the diet and medications first.
GoldSeals
Try systematic enzymes. Naticor and Serralone together.
You must take them 3 times a day on an empty stomach. It reduces inflammation. It'll take a few weeks but you'll feel some kind of relief.
3 of each 3 times a day. I take them along with MSM/Gluscomine/Chon
and Badder Q. It helps me get by.

[tmog]

Try systematic enzymes. Naticor and Serralone together.
You must take them 3 times a day on an empty stomach. It reduces inflammation. It'll take a few weeks but you'll feel some kind of relief.
3 of each 3 times a day. I take them along with MSM/Gluscomine/Chon
and Badder Q. It helps me get by.

These both are recommended for IC? How do they help with IC? How long have you been using it? What do they do exactly? Shead some light on these for me please.

[jrn1]

These both are recommended for IC? How do they help with IC? How long have you been using it? What do they do exactly? Shead some light on these for me please.
This was recommended to me by my acupuncturist. He had read article on how serrapetase(Serralone) was used for IC in the east(Japan). He suggested it to me and another IC patient he had and we both got relief from it. Best to use with Naticor to boost it's effectiveness. It does not cure you but knocks down the inflammation and pain. I gradually used a slightly higher dose to help the pain. It does work. You must take it 3 times a day on an empty stomach. The only known drug interaction is you can not be on blood thinners and take these enzymes.
I first used Vitalzyme and serrapetase. Then switched to
Naticor and Serralone. I've used it for 5 years.

[Alex1981]

3.) Sensation of orgasm without ejaculation

This is a symptom that I want. How do you get it, Alex? Did you have to do something? Not had the throbbing feeling either but I have all the others. Currently, I'm not on any meds. I tried the Elavil when I was diagnosed a few years ago but it gave me panic attacks. What does the ditropan xl do for you?

It actually only happened 2 or 3 times during sex. It kinda freaked me out but was good to not have to 'clean up' after sex! :)
Right now I am taking Elavil and Elmiron. Elavil makes me a zombie and sometimes makes my breathing weird. I'm going to see a new Uro soon. I stopped taking the Ditropan XL and switched to Detrol LA and did not notice a change in frequency so I stopped taking both.

[Alex1981]

I agree some doctors are jerks and don't listen to what you say. I remember my first urologist I saw when I was 17 kept insisting that I had an STD. I told him I never had sex and ALL my urine cultures kept coming up negative. I told him I've been having this frequency and pubic discomfort for a couple months. Even after all that he kept saying it has to be an STD thats why you have these symptoms. So I ditched that guy and went to my new current urologist. He's amazing. Never insisted that I take antibiotics. Instead he put me on Elmiron immediatly and told me if I started having muscle pain or tension he could perscribe me Valium or some muscle relaxant.


My 1st uro was a total asshole. Thankfully he retired. During the whole initial appointment I felt that he was more interested in how many times I had sex with my girlfriend than helping me. I was 25 at the time (I'm now 26) so lack of sex was not the issue.

[Alex1981]

I am no longer taking any types of anxiety medication and cut my dose of Emeral from 400 mgs to 200 mgs. After doing a lot of research, and reading what other people are doing, I started taking 2000 mg of Flax Seed Oil daily, 2000 mgs of Pumpkin Seed Oil daily, 1200 mg of Quercetin, 2,200 mgs of Glucosamine & MSN daily, Magnesium Glycinate, 800 mgs daily, and Pygeum & Saw Palmetto, 1,500 mgs daily. It really seems to be helping. I hate to take so many pills, but I rather do this than revist where I was before. No thanks.


How much are all these supplements costing you a month? Are you taking anything else such as Elmiron or Cysta-Q?




The only thing I haven't done, which I'm really starting to miss, is sex. That is what initially triggered everything and I'm petrified that if I act on my sexual feelings, which have been bubbling like lava lately, I'm going to go right back where I was when I wanted to just kill myself. My PT said I eventually will have to try it, but I'm just not willing to go there. I have looked high and low for information on chronic masturbation/frequent sex to see if it can cause nerve damage or strain, which in turn causes CPPS symptoms, but have not found anything. If any of you happen to know a study or can point me in the right direction, it would be appreciated. That's the only thing that isn't back to normal yet and that eventually I will have to deal with.


Sorry if you already mentioned this but why are you NOT having sex?

[strobers]

How much are all these supplements costing you a month? Are you taking anything else such as Elmiron or Cysta-Q?




Sorry if you already mentioned this but why are you NOT having sex?

The reason is because it triggers a massive flair. It's not worth a few seconds of pleasure to suffer agonizingly for three weeks. I'd rather just not indulge and just look back and remember the good ol' days.

[strobers]

How much are all these supplements costing you a month? Are you taking anything else such as Elmiron or Cysta-Q?



Sorry if you already mentioned this but why are you NOT having sex?

I probably spend the equivelant of $200.00 plus a month on supplements. I don't take Elmiron. It caused me to develop a membrane over my eyes. I take Cysta-Q, Bladder-Q, Cysto-Protek, Aloe Verde tabs, Quarcitin with non-citrus Vit. C. and a couple of other things. I recently received authorization to try 10 mgs of valium as a suppository, but haven't done it yet as I want to be home when I try it. Can't be falling asleep at work.

I hope this was helpful.

[Alex1981]

I probably spend the equivelant of $200.00 plus a month on supplements. I don't take Elmiron. It caused me to develop a membrane over my eyes. I take Cysta-Q, Bladder-Q, Cysto-Protek, Aloe Verde tabs, Quarcitin with non-citrus Vit. C. and a couple of other things. I recently received authorization to try 10 mgs of valium as a suppository, but haven't done it yet as I want to be home when I try it. Can't be falling asleep at work.

I hope this was helpful.

Yeah it helped a lot actually. I have been wanting to go more natural. There was a short time when I ran out of Elmiron and waited to see if I felt a big difference or if I was just having the "Placebo" effect. I eventually got more Elmiron but honestly didn't notice much of a change.

Strobers,
If you don't mind me asking how old are you? I'm asking because I am 26, was diagnosed with IC after 25 and have always had that fear that this would affect my sexual performance in some way. When you say sex "triggers a massive flair" do you mean you notice your urgency/frequency increases? Do you have pain during sex/during orgasm. Do you have the pain during masterbation?

I think my case of IC is mild and I have luckily had minimal sexual issues. A while back the head of my penis would have a throbbing sensation but sex/orgasms/masterbation/ejaculation is a pretty normal experience now. It's still something that is always in the back of my head as I get older.

Thanks again for the info. I'm going to check some of those out.

[strobers]

Yeah it helped a lot actually. I have been wanting to go more natural. There was a short time when I ran out of Elmiron and waited to see if I felt a big difference or if I was just having the "Placebo" effect. I eventually got more Elmiron but honestly didn't notice much of a change.

Strobers,
If you don't mind me asking how old are you? I'm asking because I am 26, was diagnosed with IC after 25 and have always had that fear that this would affect my sexual performance in some way. When you say sex "triggers a massive flair" do you mean you notice your urgency/frequency increases? Do you have pain during sex/during orgasm. Do you have the pain during masterbation?

I'm 46 and consider myself to have IC/CPPS. None of the four uros I saw were able to give me a definitive diagnosis, so I'm basing my problems on what I know about the diseases and my particular set of symptoms. What I mean by flair is that for about three weeks I constantly feel like I have to pee even when my bladder is empty and I get a horrible inflamed, irritated, raw feeling from my perineum to the base of my penis. It's enough to make you want to give up sex forever, which I plan to do. Nothing is worth three weeks of that type of agony, not even two weeks with Scarlett Johanson would budge me.


I think my case of IC is mild and I have luckily had minimal sexual issues. A while back the head of my penis would have a throbbing sensation but sex/orgasms/masterbation/ejaculation is a pretty normal experience now. It's still something that is always in the back of my head as I get older.

It's good that you caught it early on. If you hit it hard with everything, which includes cutting out coffee, tea, tomato products, virtually everything that is listed on the IC diet, taking the supplements I mentioned, stretching, and keeping stress to a minimum, you will keep everything in check. Hopefully anyway. I also suggest you pick up the book, "A Headache in the Pelvis." It will open up your mind to a lot of things you probably don't know anything about. It's a must read for anybody with pelvic symptoms.


Thanks again for the info. I'm going to check some of those out.

No problem. I'm glad I can help.

[TerrapinStati0n]

I'm worried that I might have this. I'm 24, last November I was out and I kept peeing all night. For the past 4 months my symptoms have fluctuated between frequent urination, bladder pain, pain in my genitals, or sometimes very little pain, if any. I've seen a couple urologists...they say that I don't have a UTI, any kinds of stones, any STDs, etc. Until these symptoms started, I used to drink coffee and coke all day. Since then I don't drink coffee and I've cut back a lot on the soda, only having one or so on days when I feel ok.

If any of you guys have had a cystoscopy done, on a 1-10 scale, how much did it suck?

And if you've had bladder installations done, how much did those suck?


I'd rather have the oral medication, obviously, but I've read that the installations are extremely helpful and successful.

So how bad are these procedures? And this may be a stupid question, but when you place a catheter up there for an installation...you can take it out right when it's finished, right? Like, you're not walking around all day with it are you?

[ICNDonna]

I'm not a man :), but I've had many instillations and the catheter is removed after the medication is instilled.

I do think it would be a good idea for you to ditch the sodas entirely and see if that helps.

Donna

[strobers]

I'm worried that I might have this. I'm 24, last November I was out and I kept peeing all night. For the past 4 months my symptoms have fluctuated between frequent urination, bladder pain, pain in my genitals, or sometimes very little pain, if any. I've seen a couple urologists...they say that I don't have a UTI, any kinds of stones, any STDs, etc. Until these symptoms started, I used to drink coffee and coke all day. Since then I don't drink coffee and I've cut back a lot on the soda, only having one or so on days when I feel ok.

If any of you guys have had a cystoscopy done, on a 1-10 scale, how much did it suck?

And if you've had bladder installations done, how much did those suck?


I'd rather have the oral medication, obviously, but I've read that the installations are extremely helpful and successful.

So how bad are these procedures? And this may be a stupid question, but when you place a catheter up there for an installation...you can take it out right when it's finished, right? Like, you're not walking around all day with it are you?

First off take a deep breath a relax.:pray: Everything is going to be O.K. Your stress and anxiety is just going to make this much, much, worse. Trust me on this. Listen to what I'm going to tell you. Listen carefully.

Cut out ALL acidic foods. Download the IC diet on this web site and it will tell you what you should or shouldn't eat. One of the worst things you can do is drink soda. Cut those out completely.

Read up on everything as it pertains to treatment. There are dozens of supplements and meds you can try. My suggestion is to get on the following as a way of developing a baseline. Alivil for pain management and Elmiron to coat the bladder walls. Both of these meds require a prescription.

Or/with try Cysto-Protek, Alo Vera caps, Quarcitin, and pharm grade fish oil.

Stretch every day. These are some excellent stretches that will help you a lot. http://www.freewebs.com/trydent78/

But yourself some relaxation CD's and listen to them. Do Yoga. Take hot baths with epsom salts; anything that will relax you. Do this daily.


Download the IC handbook if it's free (I don't remember) or buy it. It's on this site.

Sign up on the chronicprostitis.com web site. You will learn a lot about CPPS, which are closely related. Feel free to PM if you have any questions.

Buy the book, "A Headache in the Pelvis" and read it cover to cover.

The most important thing right now is for you to relax and keep your anxiety in check. You have a lot of homework to do, get cookin' on it. :)

[TerrapinStati0n]

Yeah, I'm not gonna lie...I've definitely been stressed about it and I know that that's gonna make things worse. But that's why I'm trying to find out more about it, that way if the installations and the cystoscopy are a cinch, I won't be going in there freaking out about how much it's gonna hurt. Cutting back on sodas is hard...but I mean I've had one in the past week, whereas I used to have 3-4 in a day, so progress is progress I guess.

I've looked at the IC Diet list a few times...I'm thinking I should print it out and keep it in my wallet or something, just as a reference point. Saturday night I also bought some Zyrtec cuz I was reading about how anti-histamines help IC. Either I was due for a remission or the Zyrtec really helped somehow. One of the two, because I've been relatively fine since then, thank God.


I wanted to ask one more thing, for those who have had the installations done. I read that it has like a 90% success rate. What do they mean by "Success?" is the IC more or less cured somehow? Do people experience relapses? Obviously I'd prefer to take the oral meds like Elmiron, but if the installations are more successful I guess I should suck it up for a couple weeks and do them.

[Alex1981]

I'm worried that I might have this. I'm 24, last November I was out and I kept peeing all night. For the past 4 months my symptoms have fluctuated between frequent urination, bladder pain, pain in my genitals, or sometimes very little pain, if any. I've seen a couple urologists...they say that I don't have a UTI, any kinds of stones, any STDs, etc. Until these symptoms started, I used to drink coffee and coke all day. Since then I don't drink coffee and I've cut back a lot on the soda, only having one or so on days when I feel ok.

If any of you guys have had a cystoscopy done, on a 1-10 scale, how much did it suck?

And if you've had bladder installations done, how much did those suck?


I'd rather have the oral medication, obviously, but I've read that the installations are extremely helpful and successful.

So how bad are these procedures? And this may be a stupid question, but when you place a catheter up there for an installation...you can take it out right when it's finished, right? Like, you're not walking around all day with it are you?

Hey I'm 26, male, and "feel your pain"...LITERALLY.

I also used to be a coke junkie. Cherry Coke especially. Since being diagnosed with IC I cut back. Every once in awhile I'll have a coke and I notice my frequency goes up so I limit myself to like one a month. Drinking beer, wine, or liquor doesn't really change anything for me. Most people with IC tend to stay away from drinking and like coke I limit myself to stay on the safe side. Some people on the board mention "3 week flares" after some of the above so take it easy.

Shortly after being diagnosed I had a cystoscopy, bladder hydrodistention, urethral calibration with prostatic massage, and insertion of a Foley catheter and instillation of silver nitrate done. I was alseep during most of the procedure and shortly after waking up the catheter was removed. On a scale of 0-10, 10 being totally sucked, I would say 9.

[TerrapinStati0n]

Oh man, that's no good at all. Did you find the installations helped? And if so, have you had any flare ups since then?

[Alex1981]

Oh man, that's no good at all. Did you find the installations helped? And if so, have you had any flare ups since then?

Besides the above incident I haven't had anymore done. My case of IC/CP is very mild. I went from using the bathroom about 3 times a day to going like every 2-3 hrs. The discomfort for the most part and sensation of feeling like I have to pee is almost gone. IC seems to be different for everyone. Like strobers said "RELAX" and feel free to pm for any additional questions.

:)
Alex

[TerrapinStati0n]

Alex,
So have you been able to drink coke again?


Thanks everyone for answering my questions, y'all have really been great. Seriously, thanks so much.

[Alex1981]

Alex,
So have you been able to drink coke again?


Yeah, if I go out to lunch I'll sometime order a cherry coke. I try to limit it though because caffeine/carbonated drinks are my kryptonite.

:)

[TerrapinStati0n]

That's great news. First of all I'm happy for you that you seem to have had a nice recovery. Hopefully if/when I get diagnosed with IC, it'll be a "mild" case and I'll be able to tough it out and get the necessary procedures done. The thought of no soda terrifies me. Back in college it was coffee in the morning, soda in the afternoon, and beer at night. Now I can't have any. Which isn't the end of the world, I can live without alcohol and coffee, I just like to have something with some flavor when I eat a meal.

I've also read that chlorine may be hard on IC, which is unfortunate because I've worked at a pool for the past few summers and I intend to this year. But I don't HAVE to get in the water, I'm just a manager. But believe me these summers in MD can suck, being so close to the swamp of DC. But again, it's good to know that there's some hope. Hopefully I'll get a good diagnosis soon and will be able to get back to normal.

Thanks again!

[BluesCrew1]

Hey Alex1981, Good job getting so many men to respond! I have been away from this web site about 2 weeks due to work overload, home overload, and feeling poorly inbetween.

I was diagnosed actually about a year ago, but have been suffering for about 2 years, until my old Uro decided it was IC and that I had to see someone else. My new Uro seems to understand, but that has not limited the suffering. I started taking the IC diet more to heart about a month to six weeks ago. I also started using Prelief regularly. With every meal and anything questionable I put in my mouth - food, drink, whatever. I have discovered a couple of triggers to the IC pain and orgasm seems to be one. My IC followed a radical Prostatectomy for Prostate Cancer. Well, the cancer is gone, but the pain just keeps on givin'. I have not tried Elmiron, my urologist "doesn't believe it really helps, and can have fairly negative side effects. I really don't know as I haven't taken it. But, I do take Urised - it helps alot! I have found that the Prelief helps more if you put it in your beverage. I have not tried the granules that you can sprinkle on food, but that is supposed to be good as well. I usually take the Prelief tablets just as I start eating a meal or during. I stopped for awhile to see what happened and the pain was back in less than 24 hours. I have done this with a variety of foods as well to see if I can "turn it on" / "Turn it off" by eating or not eating that food. I have found the I really pay a price to eat an orange (I love fruit), Detroit has good tap water, but it really drives urgency in my case. I learned that tap water could hurt you on this web site as well. Finally, I have a prescription for Darvocet that is largely for my bad back, but it does help with an IC flare-up. My doctor has not discouraged me using it for the IC. Since I am also a cardiac patient, my docs watch the meds I take pretty closely.

Anyway, don't give up the fight! Keep trying things to see what works and what doesn't. I have really just begun to experiment. But, I have identified a few triggers at this point. You can too!

Take Care,

BluesCrew1

:elvis:

[BluesCrew1]

If any of you guys have had a cystoscopy done, on a 1-10 scale, how much did it suck? At least a 6 (feels like a bad catheterization - bearable, but not real pleasant) and that is just for a look and see! Don't try laser cautery w/o going to sleep!

And if you've had bladder installations done, how much did those suck? I have had a hydrodistention, but not an instillation. This was not so bad. I had laser cautery done at the same time to try to heal the ulcers in my bladder. It helped some. Again, don't do this w/o being put out is my recommedation.


Good Luck,

BluesCrew1

[Alex1981]

Hey BluesCrew1 & TerrapinStati0n,
Thanks for responding to the thread and keeping it going. I know sometimes as men we feel so alone with these bladder issues whether it be Prostatitis or IC and if you are like me whenever I would google IC it always talked about women and how rare it was for men. It also might seem that no one is reading this section but trust me...many are. Like BluesCrew1 I have also been away from the forum for awhile but it's always nice to hear stories of success, what works, and of course the newly diagnosed.

[TerrapinStati0n]

hey thanks to you, alex, for keeping up with this.

basically, from what i've read, it seems that there is some hope. hopefully i can get help through non-invasive methods though. if i'm getting a cystoscopy done, hopefully i can request to be knocked out. and hopefully if i get installations...well...i doubt they knock you out but maybe i can just take some percs or something beforehand haha.

but i digress...it seems that there should be hope. my symptoms have waxed and waned in the past few months, but they stay within boundaries. im hoping that i can get diagnosed properly with whatever i have, and begin treatment soon. it's upsetting to see that Elmiron can take 6 months to start working, but if it works, it works. i've also read about pyridium but that's not so much a treatment as it is a way to take your mind off it, and i'm wondering if it's something that's meant to be taken long term.


Do things like cystoprotek and Prelief come over the counter or are they prescription only?

I'm hoping to end up in law school in 2009 and I've heard horror stories about how hectic and stressful it can be, I'm hoping to have this problem under control by then so that I can concentrate on grades instead of keeping my mind off my pain or discomfort.

It's nice to know that I'm not alone in this, but at the same time I get pretty jealous when I see someone putting whatever they want into their body and not face any consequences. Sometimes I get sad...like, why couldn't this have happened 20-30 years from now after I've had a chance to have a career and a family. But if, like has been said before, some Elmiron and a couple installations and I'll be good to go, then at least there's some hope

[TerrapinStati0n]

Oh yeah...also, I've read that there are many different theories as to why IC can manifest itself in someone. A genetic predisposition, an autoimmune proble, too much coffee and soda, etc.

I can't express how much I'm hoping, at least in my case, that it was too much coffee and soda. Avg 2 cups of coffee 3-4 times a week = lets say 7 cups per week, plus 3 sodas a day = a total of 28 servings per week or 4 servings a day of something that can be detrimental...well...let's say I'm smart enough to figure out that if that's in fact the case, coffee and soda = bad, and hopefully the treatments will work and i can just avoid things like those and get back to normal

[BluesCrew1]

TerrapinStatiOn, and Alex1981.

it is interesting to chat with men on this website! I found the Angels to be just that "Angels". Very understanding and knowledgeable, but it is good to get a man's perspective.

As for long term use of Pyridium, my urologist says no. It can apparently build up in your system, but unfortunately, I do not know what happens at that point. The conversation ended there. He has no concern with long term use of Urised and its generic equals. You pee a real nice green to shades of blue depending upon how hydrated you keep yourself. it does stain your underwear a bit - so I would not recommend going commando.

As for coffee causing IC, I suppose that is possible, but mine started after readical prostate surgery for prostate cancer. I am a bit older than you felas at 57. But, it still hurts like a )(*&()_&, and it still gets you down. I have found that this web site has lots of very useful information, and the mutual support is fantastic. I get little real support at home from my other half. She understands, but has suffered from IBS for a long time now. So, she keeps my meds stocked and listens a little when I complain. I try not to do that very often. Since IC is most often described as an immunological deficiency, I see it as much as my allergies getting worse - which they have done my entire adult life.

I really hope you guys can overcome this mess. Life is too short as is. Pain doesn't give you any more time, but it may seem like it!!

Meanwhile, keep on keepin' on.

Bluescrew1

[Alex1981]

TerrapinStatiOn, and Alex1981.

it is interesting to chat with men on this website! I found the Angels to be just that "Angels". Very understanding and knowledgeable, but it is good to get a man's perspective.

As for long term use of Pyridium, my urologist says no. It can apparently build up in your system, but unfortunately, I do not know what happens at that point. The conversation ended there. He has no concern with long term use of Urised and its generic equals. You pee a real nice green to shades of blue depending upon how hydrated you keep yourself. it does stain your underwear a bit - so I would not recommend going commando.

As for coffee causing IC, I suppose that is possible, but mine started after readical prostate surgery for prostate cancer. I am a bit older than you felas at 57. But, it still hurts like a )(*&()_&, and it still gets you down. I have found that this web site has lots of very useful information, and the mutual support is fantastic. I get little real support at home from my other half. She understands, but has suffered from IBS for a long time now. So, she keeps my meds stocked and listens a little when I complain. I try not to do that very often. Since IC is most often described as an immunological deficiency, I see it as much as my allergies getting worse - which they have done my entire adult life.

I really hope you guys can overcome this mess. Life is too short as is. Pain doesn't give you any more time, but it may seem like it!!

Meanwhile, keep on keepin' on.

Bluescrew1

BluesCrew I'm curious to know what meds/supplements you are currently taking. I haven't heard much about Urised (you learn something new everyday). I took Elmiron pretty steady for over 6 months and then have since drastically stopped taking it as much and haven't really noticed a major difference and want to get off it all together.

P.S. Is anyone else who currently takes Elavil feel like a zombie at times?

[Lancerdad]

I had the bladder installation done two years ago. It did help for a while. I would caution you not to leave the hospital until you can pee. I told them I could not pee and they stll sent me home. Two hours later my daughter was taking me to ER to get a catheter put in. I had to keep in in for 1 week.
The procedure itself is a piece of cake and I can recommend it. Good luck to you!

Brian in MI Male 54


I wanted to ask one more thing, for those who have had the installations done. I read that it has like a 90% success rate. What do they mean by "Success?" is the IC more or less cured somehow? Do people experience relapses? Obviously I'd prefer to take the oral meds like Elmiron, but if the installations are more successful I guess I should suck it up for a couple weeks and do them.[/QUOTE]

[BluesCrew1]

Alex1981, You asked so here are what I take pretty much every day for all of my various conditions. Please remember, I am a cardiac patient, too. I had triple bypass surgery when I was 42, had a heart attack at 49 which resulted in 3 stents being placed. I had prostate cancer diagnosed at 54 with prostate removed within 2 months of diagnosis as my prognosis was poor to avoid the cancer from matastisis. Then came the IC and after that the pelvic floor disfunction. I also have advanced degenerative disk disease in my lower back and year round allergies. So . . . here goes: 1 Aspirin every day - a real one, not the 1/4 size (probably not so good for IC, but I have not made any connections there at all), Synthroid (I forgot, I am hypothyroid too!), Zocor 80 mg per day, Coreg (Beta Blocker - 12.5 mg 2xper day), Niaspan (high dose niacin 2 grams /day), Xanax (.5 mg per day to help me relax enough to sleep - but since it is an anti - anxiety tablet, it may help with the IC, too. It doesn't hurt!), Alomide eye drops for allergy eyes (1- 4 drops per eye per day), Uriced (I usually take two to three per day, but am prescribed up to 8/day - I take more when it hurts more. I try to catch the pain before it gets real bad), I take Sudafed every day for decongestant. (I use it as needed, but literally take some everyday. It seems to help with the IC, but sometimes I am not sure if it does or if it is my imagination.), I have a prescription for Allegra - D for when the allergies are really bad, but I have made a solid connection with this medicine and the IC flare ups. So I have pretty much set it aside at this point. I have not tried Clariten or Clariten-D, but i did take the newer version (Clarinex-D) back in the fall for awhile. I did not know then what I know now, so I do not know if there is a flare-up connection with it. I do usually take a benedryl at night now. It seems to be okay with the IC so far, finally, I take Motrin most every day for my back, and I have a prescription for Darvocet for really bad back pain days. But, it does seem to take the edge off of the IC as well. But, this is for bad days. I do not take this continuously. Only upon occasion. My Cardio also prescribed Folic Acid, Bitamin B6, Vitamin B12, and Vitamin C supplements. I have stopped the vitamin C as I can tie it directly to pain. I have also read the Vitamin C is hard on IC. It is for me. I read about some non-citrus vitamin C, but have not found any. Anyway, the vitamins made a big difference when I started them after the heart attack. Again, everything on my list is agreed upon by both my Primary Care Physician and my Cardiologist. My Urologist has been over the list with no comment - which at this point surprised me. By the way, he is listed as a Uro that treats IC on this web site. My PT is also listed on this web site I found out. Both have done long term studies on IC. In fact my doctors Nurse Practicianor (sp?), recently asked if I would consider being in a study they are kicking off this spring. I said, absolutely. I just hope I am not in the control group! But, since it is a double blind study, I don't think they would know if I am a control or a tester. If it makes me feel better, I am not sure I care.

I hope the above helps you. My uro does not believe in Elmiron at all as best as I can find out. He is supposed to be one of the best in treating this condition in the Detroit area.

Stay Well,

BluesCrew1

[Cadyfatcat]

Hey guys;

Just realized this thread was getting a lot of action so I thought I would chime in, sorry for the long post but I will try to itemize it. I got IC after a laparoscopic appendectomy about four years ago during my freshman year of college. I went undiagnosed for a long time though and thus actually did a lot of the worst things I could for IC. I drank cranberry juice because I thought this would help cleanse my bladder of the infection that the urologists couldn’t detect but insisted was there anyway. I took tons of antibiotics over and over again.

I have developed really bad pelvic floor dysfunction from my undiagnosed IC, I also did a lot of kegel exercises at one point to see if they would help with the urgency…and for two years after the onset of symptoms I was having sex daily – my girlfriend was really hot…I just couldn’t stop myself. Anyway, eventually I started having bad pain with sex and prematurely ejaculating because of my PFD.

Sex:

Don’t give up on sex, aside from being really pleasurable, sex is innately related to ones mental health. Psychologists stress that sex is one of the baseline needs required for good mental health. Just look at Maslow’s triangle or something like that.

I think most of the pain we (men with IC) experience during and after sex can be attributed to pelvic floor dysfunction rather than IC itself. Dr Moldwin’s postulates this in his book, he says; men generally experience lesser symptoms than women with IC, but men are more prone to and affected by pelvic floor musculature problems that often accompany IC. I myself have experienced drastic improvement in sexual symptoms that correspond to improvements in pelvic floor musculature.

Elmiron:

Yeah it sucks that this medication could potentially have side effects we don’t know about down the road…but for me its worth it, the only side effect I have now is dry mouth. Elmiron really helps, and I figure that the improvement in my daily function and mental health will help overcome any chemical side effects that the drug may create, or in other words, there are plenty of physical manifestations of poor mental health and less physical activity due to constant pain and urgency you have if you don’t take elmiron. It’s a trade off, one that I am willing to make. I know Elmiron works, I took it for six months, was drastically improving, and was able to eat more iffy foods without problems, and then I stopped to see if it really was the elmiron that was helping and not other medications. About a month later my symptoms were much worse again and I went back on it.

Cystoscopy:

From my experience and from Doctor Moldwin’s book – (Dr Moldwin is a really intelligent guy and he has a grasp on just about everything having to do with IC – read his books if you haven’t already,) the cystoscopy procedure in men is much more taxing on the nerves and organs and has the potential to aggravate things down there a lot more. I had one once and am not going to have one again, especially since I think nerves and a pain cycle play a big part in IC. On a 1-10 scale I would say about a 10 during the procedure…and then a gradual decrease from ten to zero over the next two weeks. The first couple of days afterward were excruciating and I needed opiates to deal with the pain.

[GuyWithIC]

Hi Guys:

Just ran across this forum a couple days ago and was thrilled to see there was a thread for men with IC. I was diagnosed Sept. 2006. I've been dealing with this for years. Same story... Urologist diagnosed prostatitis, UTI, suspected kidney stones, finally I think as a last resort I had cystoscopy and he diagnosed IC. Said my bladder was very inflamed and he could not stretch it to full capacity. Said it would only hold about half the volume that it should. He also said I was one of only about six other male patients he had with IC. I went on Elmiron 4/day. Been taking it ever since and I haven't seen much if any improvement. Went back to the Doc this week and he put me on Detrol LA. Has anyone had any luck with Detrol?

Before I was going every 1-2 hours. But, when I would urinate, the pain would go away for a while. Now on Detrol, the pain does not subside after urination and it seems like I'm not completely empying my bladder. I was told that if this doesn't work, the only thing left to try is bladder installation. Not looking forward to that!

Anyway, glad to know there is a place for guys to discuss this. For a long time I thought I was all alone.

KC

[strobers]

Hi Guys:

Just ran across this forum a couple days ago and was thrilled to see there was a thread for men with IC. I was diagnosed Sept. 2006. I've been dealing with this for years. Same story... Urologist diagnosed prostatitis, UTI, suspected kidney stones, finally I think as a last resort I had cystoscopy and he diagnosed IC. Said my bladder was very inflamed and he could not stretch it to full capacity. Said it would only hold about half the volume that it should. He also said I was one of only about six other male patients he had with IC. I went on Elmiron 4/day. Been taking it ever since and I haven't seen much if any improvement. Went back to the Doc this week and he put me on Detrol LA. Has anyone had any luck with Detrol?

Before I was going every 1-2 hours. But, when I would urinate, the pain would go away for a while. Now on Detrol, the pain does not subside after urination and it seems like I'm not completely empying my bladder. I was told that if this doesn't work, the only thing left to try is bladder installation. Not looking forward to that!

Anyway, glad to know there is a place for guys to discuss this. For a long time I thought I was all alone.

KC

Welcome to the boards. There is a lot of information on here for you to check out. I would also suggest you check out the chronicprostitis.com website as IC/CPPS are very closely related. I've learned a lot from being part of that web site.

[BluesCrew1]

I have been absent from this web site for a few days, so I have some catching up to do.

As of this time, I have not used Elmiron. My Uro does not believe it works for most if not all patients, especially men.

My IC continues as does my Pelvic Floor Syndrome. I finished about 14 session of Physical Therapy on April 3rd for the PFS and am trying to go it alone. I am in the mddle of reading "A Headache in the Pelvis". At present, the pain in my pelvis has outdistanced the IC pain, but has gotten some better. According to the book, it could take months and months of effort to make the PFS go away. Fortunately, I have execised most of my adult life, so this is a change in exercise protocol. Unfortunately, the PFS has caused me great difficulty with most aerobic activities - so I have slowed down on this until I make more progress on the PFS.

Now that you know a bit about me, from your new posting is sounds like you began you symptoms in the same time frame as I did. My apparently surfaced following a radical prostatectomy for prostate cancer. But, I have always had a "small bladder", if you know what I mean.

A lot of information on this web site is very helpful. If you haven't given any thought to the IC diet, you need to do that. It has helped me a lot. Everyone's triggers for IC pain can be a little different, but seems like most on this site have at least some food triggers. For me, I have found that Vitamin C and Oranges are the WORST! I live in Southeast Michigan and drink Detroit Tap Water - which all in all is some of the best - but, it can be a trigger. I have been using Prelief with my food. This helps quite a bit.

I found that one of my allergy medicines that I depend upon at the worst times of year flares me up - that is Allegra-D. Sudafed by itself seems to help - at least a little. I have had the best result by consistently taking Urised 2 to 3 times per day. It is hard to get right now, but I learned here ont this site that a generic - Prosed - is also effective. I have not used it, but would/will pursue it if I cannot get a refill of Urised. I also take a Xanax tablet about and hour before bedtime. I don't know if this helps with IC, but it may help settle things down. I usually end up getting up about once a night is all at this point. At the worst point, I was out of bed about once every hour or two at best. Needless to say, being down on good sleep will not help your condition.

My bottom line at this point it that I will deal with the urgency and frequency for the most part and try to elminate or minimize the pain. As that is managed, I can usually try to extend time between urinating. I have had several times over the last 3 to 4 weeks where I can go 3 hours before I have to go. This is usually in the morning. My frequencies increase throughtout the day with water intake and such. If the pain between the IC and the PFS get the best of me, I do have a prescription for Darvocet. This is to help me with degenerative disk disease in my lower back, but I have found it helps with IC and PFS pain on a bad day as well.

We are with you brother. If you come up with something that works specifically in you case, please share it back. Good Luck in the struggle.

BluesCrew1

[GGOMEZ]

Hello Guy with IC,:hi:

I too have been dealing with IC for several years. I also was misdiagnosed for several years until my present uro told me the news 2 years ago. I take Elmiron four times a day and I get bladder instillations every other week. The instillations help a lot. Without them I would probably be in constant pain. I used to have them twice a week but have being able to pull back a little. I have been getting them since I was diagnosed with IC. I'm pretty tired of them and want to stop but I have not been able to go more than three weeks before the pain gets to unconfortable and I have to get them again. I tried Dektrol before I was diagnosed with IC and it didn't help me at all. I use Valium and Ultracet for the pain and they help. Prelief helps a lot also and so does Urelle. Of course sticking to a good IC diet is also very important. In addition, this website has a lot of helpful information that has helped me. Good luck and hang in there.

[strobers]

I wish I could report that I'm doing better, but I've taken a nose dive. I've been dealing with IC/CPPS for 14 months and I've grown so sick of it.

Last Monday, April 15th, I was voiding when all of a sudden I involuntarily clamped up half way through. It was the equivalent of bending a garden hose in half. It only lasted a second, but it seems that I refluxed urine back into my prostate ducts. Is that even possible? It put me in a bad flare.

After that I started sitting to void, but every time I sit down to go I get bad hesitancy and frequently I start to clamp down again. Most of the time I can stop that happening in time, but last night it happened before I went to bed and I woke up at 3:30 this morning with this miserable feeling; a sense that my pelvic area is full and bloated with this underlying irritation. I feel this need to void, but I know my bladder is empty because I just went. It's miserable.

At this point I'm just taking Elavil along with a bunch of different supplements. I also am stretching a lot, taking hot baths, etc. but I can't seem to get any positive momentum going.

Do any of you experience hesitancy or "clamp down" involuntarily when you void? How do you stop it? Is it actually possible for urine to back up into your prostate and cause irritation? Any medication recommendations? This is driving me crazy and making me fearful about using the restroom.

Man, how I hate this disease.

[ICNDonna]

strobers, it sounds like you may be having spasms. Have you talked to your doctor about this? There are some meds that help relax the muscles to allow easier urination and it may be that's what you need. What kinds of supplements are you taking? Be sure to take a list when you go to the doctor.

Donna

[Cadyfatcat]

Definitely sounds like a pelvic floor spasm to me. I'm sure you have read A Headache in the Pelvis; maybe it is time to start doing some of the myofascial release techniques discussed therein.

[strobers]

strobers, it sounds like you may be having spasms. Have you talked to your doctor about this? There are some meds that help relax the muscles to allow easier urination and it may be that's what you need. What kinds of supplements are you taking? Be sure to take a list when you go to the doctor.

Donna

Hi Donna,

My uro is sick of me. Even though I only see him every 4 to 6 weeks when I go in I can tell that he is just waiting to get me out of his office. There isn't any money in guys with IC/CPPS. It's a drain on their time. They make money when they can take out organs and prescribe medications. Bastards.

I'm taking the usual Cycto-protek, Elavil, Alo Vera, Quarcitin, MSM, Pharmo grade fish oil, flax seed oil, etc. To this day I don't know what I have from the standpoint of problem. I have some IC symptoms, but I never have had nocturnal pain. I sleep like a baby usually. When my bladder fills it does not hurt, I just have frequency.

What's weird is that I have seen my PT off and on or several months and I don't have any major trigger points in my pelvic floor or externally. Just overall tightness.

Right now my biggest symptom is this clamping/hesitation. It's perpetuating my flare. I feel raw in my inside from my anus to about the base of my penis especially when I bend a certain way. It's always WAY worse when I'm sitting. That's another reason why I don't think I have total IC. From what I read, it hurts no matter if you are sitting or standing.

For two months, November 4 to January 4 I was COMPLETELY normal except for two isolated days. I have no idea why and I have no idea why I can't get there again. :cussing:

[strobers]

Definitely sounds like a pelvic floor spasm to me. I'm sure you have read A Headache in the Pelvis; maybe it is time to start doing some of the myofascial release techniques discussed therein.

Like I said, my PT pokes around in there pretty good and she has yet to find a trigger point. Maybe she needs to find another muscle to press. I don't know. I'm going to bring her my Headache in the Pelvis book and maybe we can try some new things out.

I just don't want to live like this. It could be worse, I know, but my quality of life is just going down the toilet.

[strobers]

[QUOTE=Cadyfatcat;413148]Hey guys;


Sex:

Don’t give up on sex, aside from being really pleasurable, sex is innately related to ones mental health. Psychologists stress that sex is one of the baseline needs required for good mental health. Just look at Maslow’s triangle or something like that.

I think most of the pain we (men with IC) experience during and after sex can be attributed to pelvic floor dysfunction rather than IC itself. Dr Moldwin’s postulates this in his book, he says; men generally experience lesser symptoms than women with IC, but men are more prone to and affected by pelvic floor musculature problems that often accompany IC. I myself have experienced drastic improvement in sexual symptoms that correspond to improvements in pelvic floor musculature.

I haven't had sex since October 13, 2007. It isn't worth a few seconds of pleasure to weather three weeks of unabated hell. My IC/CPPS started after when I think was too much sex/masturbation and high level of stress. That combination was the teetering point. I may feel like a Priest, but at this point all I can do is fantasize and remember the good ol' days.

[elitynski]

Can you think about what was different during the Nov 4 - Jan 4 timeframe. How was your stress level? Were there exercises or any routines you were doing? Something was contributing to the help.

I know what you mean about the frustration of the waxing and waning. Were you ever diagnosed with any PFD?

I have PFD and it is a long journey. I have done 4 PT sessions and I have had a couple of stretches where things felt better and then where things felt worse.

Don't give up hope - just keep moving forward!! I don't know if you are in a good area for URO's but if you don't like your URO find one you can trust. I live in the Chicago area and have been fortunate to find some great UROs out here.

[OrlandoP]

Hi Donna,

My uro is sick of me. Even though I only see him every 4 to 6 weeks when I go in I can tell that he is just waiting to get me out of his office. There isn't any money in guys with IC/CPPS. It's a drain on their time. They make money when they can take out organs and prescribe medications. Bastards.

I'm taking the usual Cycto-protek, Elavil, Alo Vera, Quarcitin, MSM, Pharmo grade fish oil, flax seed oil, etc. To this day I don't know what I have from the standpoint of problem. I have some IC symptoms, but I never have had nocturnal pain. I sleep like a baby usually. When my bladder fills it does not hurt, I just have frequency.

What's weird is that I have seen my PT off and on or several months and I don't have any major trigger points in my pelvic floor or externally. Just overall tightness.

Right now my biggest symptom is this clamping/hesitation. It's perpetuating my flare. I feel raw in my inside from my anus to about the base of my penis especially when I bend a certain way. It's always WAY worse when I'm sitting. That's another reason why I don't think I have total IC. From what I read, it hurts no matter if you are sitting or standing.

For two months, November 4 to January 4 I was COMPLETELY normal except for two isolated days. I have no idea why and I have no idea why I can't get there again. :cussing:

You sound just like me, except I am a girl. I will tell you that pudendal nerve entrapment is also a possibility for you, given your description of sitting.

As for PT, I think it's a great idea in theory, but you are hardly the first person to report that their PT can't find trigger points. I'm generally too tight, which we are working on, but honestly, I don't think it directly relates to my bladder pain/discomfort.

[GuyWithIC]

Guys... I've finally decided to give DMSO a try. I'm scheduled for May 5th. Any other guys out there had this procedure done? If so, is it very painful? How long do you have to hold the solution in? Any side effects from having it done? I'm not really looking forward to doing it, but the elmiron and detrol is just not working. Any insight would be greatly appreciated.

[strobers]

You sound just like me, except I am a girl. I will tell you that pudendal nerve entrapment is also a possibility for you, given your description of sitting.

As for PT, I think it's a great idea in theory, but you are hardly the first person to report that their PT can't find trigger points. I'm generally too tight, which we are working on, but honestly, I don't think it directly relates to my bladder pain/discomfort.

Hi Orlando,

I don't know what to think anymore. I'm just sick of being sick. You know? I checked out the PNE and I don't really seem fit the description, with the exception of feeling much better when I'm standing and feeling better when I'm sitting on a toilet. Other than that I don't have tenderness in my perineum or anywhere else in that area, when I poke around. My PT has explored my insides more thoroughly than Lewis and Clark explored the Grand Canyon and nothing hurts or is tender; just tight. It's my understanding that that pain is always generated by pressing along the course of the pudential nerve, so maybe I need to have her do that and see what happens. Right now I just have had an almost constant smoldering, irritated, raw feeling from between the base of my penis to my anus, but the more pressing symptom is this feeling of fullness like I need to void, but I don't have urgency. I've been like this since last Monday.

[strobers]

Guys... I've finally decided to give DMSO a try. I'm scheduled for May 5th. Any other guys out there had this procedure done? If so, is it very painful? How long do you have to hold the solution in? Any side effects from having it done? I'm not really looking forward to doing it, but the elmiron and detrol is just not working. Any insight would be greatly appreciated.

I've never done it. I understand it's hit & miss, but it's better to do something then do nothing. Advocating for your health is the most important thing you can do. Let us know how it goes.

The best thing is to attack IC with everything at your disposal, but do it step by step so you can see what actually worked or didn't work. I also think as men we need to also take care of the prostate and the pelvic floor. All three things need to be addressed as part of treatment; bladder, pelvic floor, and prostate. Just my 2 cents.

[OrlandoP]

Hi Orlando,

I don't know what to think anymore. I'm just sick of being sick. You know? I checked out the PNE and I don't really seem fit the description, with the exception of feeling much better when I'm standing and feeling better when I'm sitting on a toilet. Other than that I don't have tenderness in my perineum or anywhere else in that area, when I poke around. My PT has explored my insides more thoroughly than Lewis and Clark explored the Grand Canyon and nothing hurts or is tender; just tight. It's my understanding that that pain is always generated by pressing along the course of the pudential nerve, so maybe I need to have her do that and see what happens. Right now I just have had an almost constant smoldering, irritated, raw feeling from between the base of my penis to my anus, but the more pressing symptom is this feeling of fullness like I need to void, but I don't have urgency. I've been like this since last Monday.

When you describe "smoldering, irritated..." in the area you do, that sounds like PNE. But the thing is, I thnk all of us are a mish mash of symptoms. I think when nerves go haywire down there, it's anyone's bet. I have pain ranging from day to day,problems with constipation, blah blah blah. And yes, I HEAR YOU on being sick of being in pain.

Recently, I started giving in to the meds. I am taking a small dose of Tofranil, and Percocet PRN. I am not as sure about the Tofranil, but the percocet helps tremendously. I think it's a slippery slope, which is worse: the meds, or being in pain all the time. Hard choices. I will also tell you that I went into spontaneous remission for quite a few years, and it can happen. I was totally med free at the time.

Hang in there. I know how you feel.

[GuyWithIC]

Guys... I've finally decided to give DMSO a try. I'm scheduled for May 5th. Any other guys out there had this procedure done? If so, is it very painful? How long do you have to hold the solution in? Any side effects from having it done? I'm not really looking forward to doing it, but the elmiron and detrol is just not working. Any insight would be greatly appreciated.
Well, I had my first DMSO treatment on Monday. The procedure was not bad at all. A little pain at first but he put numbing medication in my urethra before inserting the catheter and that really helped. Once the catheter was in, it only took a few minutes to put the meds in. He used DMSO, Heprin, and Lidocaine. I was told to hold it at least 30 minutes, but the longer I could hold it the better. I was able to hold it for one hour & 15 minutes. The last 15 minutes was pretty intense.

The good news is three days later, I can actually tell a difference. I'm not having to urinate as much, and the pain does seem to be a little better. I'm hoping that this is a sign of good things to come as I have the rest of the treatments.

I'll keep you guys posted.....

[strobers]

Well, I had my first DMSO treatment on Monday. The procedure was not bad at all. A little pain at first but he put numbing medication in my urethra before inserting the catheter and that really helped. Once the catheter was in, it only took a few minutes to put the meds in. He used DMSO, Heprin, and Lidocaine. I was told to hold it at least 30 minutes, but the longer I could hold it the better. I was able to hold it for one hour & 15 minutes. The last 15 minutes was pretty intense.

The good news is three days later, I can actually tell a difference. I'm not having to urinate as much, and the pain does seem to be a little better. I'm hoping that this is a sign of good things to come as I have the rest of the treatments.

I'll keep you guys posted.....


Hey Guy,

I'm very glad to hear that it was helpful. Keep us posted. Are you planning on having one every couple of weeks?

[GuyWithIC]

Hey Guy,

I'm very glad to hear that it was helpful. Keep us posted. Are you planning on having one every couple of weeks?
The plan is to do one treatment a week for six weeks. The Doc also gave me a prescription for 25mg Elavil at night. Not sure which one is working, but something seems to be helping.

[BluesCrew1]

Thanks for the update. I am glad you are trying something and that it may be working.

I had my third round of "hydrodistension and laser cautery" this past Thursday, 5/8/08. I have had this done a couple of times before with mixed results (worst case was basically things did not change). However, about 3 weeks ago I was doubled up in pain. They prescribed a pain med and scheduled this procedure. I asked my Uro about the mostly negative comments on the web site here questioning this procedure. He simply said, that if there are no ulcers in the bladder, hydrodistension alone my not accomplish anymore than irritating everything, making it worse. He also indicated that many urologists try to distend the bladder, too much. Which would also make it worse. After the procedure, while I was still in recovery, he told my wife that he found "a lot" of ulcers. If this is like the first time I had it done, the next two weeks will be slow improvement, then I should be good for awhile! (One can hope!)

Anyway, good luck with the DMSO treatment and here's praying for you!

BluesCrew1

[koen]

Name: Koen
Age: 43
Diagnosed: Two days ago :)
Current Meds: Cypro and Pyridium (post-surgery)


My symptoms:
1.) Difficulties peeing, especially in public restrooms. I always thought I had/have a 'shy bladder'. Always try to use a stall. But at home I often can't either, sitting down may help.
2.) Sometimes 'needlestick' pains in lower abdomen
3.) peeing frequently, also at night
4.) sometimes a weak stream
5.) no sexual problems, except for sometimes having an urge to pee during sex

[strobers]

Name: Koen
Age: 43
Diagnosed: Two days ago :)
Current Meds: Cypro and Pyridium (post-surgery)


My symptoms:
1.) Difficulties peeing, especially in public restrooms. I always thought I had/have a 'shy bladder'. Always try to use a stall. But at home I often can't either, sitting down may help.
2.) Sometimes 'needlestick' pains in lower abdomen
3.) peeing frequently, also at night
4.) sometimes a weak stream
5.) no sexual problems, except for sometimes having an urge to pee during sex

Welcome to your home away form home Koen. You'll learn a lot here. Good luck to you. We all need it.

S

[chocl8guy]

Hey guys,
I've been to this site a thousand times but never noticed this thread for guys. I'm 45 and was dx'd 1 1/2 years ago. Had symptoms for about 2 years before that. Current treatments include Elmiron, Elavil, Prelief and IC diet (strict). In the process of instillations. Tomorrow will be my 4th of 6...one per week for 6 weeks.
I manage well during the day but I can't sleep thru the night. Even if I wake up once at night, I can't fall back asleep which messes me up during the day. I find a big connection with struggling with bowel movements and IC flares. If the bowels aren't a challenge, I find the IC feels better. Anyone else find that as well? Not too many guys out there with this disease so it's great to talk to others about it.
Feel free to pm me for anything you'd like to share.

[GuyWithIC]

Hey guys,
I've been to this site a thousand times but never noticed this thread for guys. I'm 45 and was dx'd 1 1/2 years ago. Had symptoms for about 2 years before that. Current treatments include Elmiron, Elavil, Prelief and IC diet (strict). In the process of instillations. Tomorrow will be my 4th of 6...one per week for 6 weeks.
I manage well during the day but I can't sleep thru the night. Even if I wake up once at night, I can't fall back asleep which messes me up during the day. I find a big connection with struggling with bowel movements and IC flares. If the bowels aren't a challenge, I find the IC feels better. Anyone else find that as well? Not too many guys out there with this disease so it's great to talk to others about it.
Feel free to pm me for anything you'd like to share.
Welcome chocl8guy... It was kind of wierd reading your bio. I'm 48, diagnosed about the same time, taking Elmiron & Elavil and currently doing instillations as well.

Welcome to the group. You will find lots of info on here.

[strobers]

Hey guys,
I've been to this site a thousand times but never noticed this thread for guys. I'm 45 and was dx'd 1 1/2 years ago. Had symptoms for about 2 years before that. Current treatments include Elmiron, Elavil, Prelief and IC diet (strict). In the process of instillations. Tomorrow will be my 4th of 6...one per week for 6 weeks.
I manage well during the day but I can't sleep thru the night. Even if I wake up once at night, I can't fall back asleep which messes me up during the day. I find a big connection with struggling with bowel movements and IC flares. If the bowels aren't a challenge, I find the IC feels better. Anyone else find that as well? Not too many guys out there with this disease so it's great to talk to others about it.
Feel free to pm me for anything you'd like to share.

Welcome to the board. I can manage during the day with meds and luckily I usually sleep like a baby. Bowel movements have been an issue with me also. It seems that lately a lot of the time I'm constipated. The more constipated I am the worse my flares are. Because so much of this is nerve related, it stands to reason that the bowel area and the bladder are effected going both ways. I'm taking Elavil also, and a bunch of other things. I'm going in for a uro study this Thursday because I'm starting to have problems with urination. I have to strain to go and I frequently clench up. I also feel like I have to go 95% of the time. It's not fun. I'm a year older than you. It's amazing that at our age we have to deal with something so unbelievably rotten.

[GuyWithIC]

Hey guys,

I just had my forth DMSO treatment this past Friday, and it seems like they are starting to help. I have a question about a medication that my Dr. gave me. He gave the usual antibiotic plus a new med called Utira-C. Since the last treatment, I have had almost no symptons. A couple days after my first three treatments, I would go back to the burning and frequent trips to urinate. So far the only side effects from the medicine is green pee! I can live with that if this works.

Is anyone else taking Utira-C and getting relief? I've taken my last samples today and I guess I'll find out in a day or so if it really was the medicine.

[strobers]

Hey guys,

I just had my forth DMSO treatment this past Friday, and it seems like they are starting to help. I have a question about a medication that my Dr. gave me. He gave the usual antibiotic plus a new med called Utira-C. Since the last treatment, I have had almost no symptons. A couple days after my first three treatments, I would go back to the burning and frequent trips to urinate. So far the only side effects from the medicine is green pee! I can live with that if this works.

Is anyone else taking Utira-C and getting relief? I've taken my last samples today and I guess I'll find out in a day or so if it really was the medicine.

Never heard of it, but it's nice that your doc is willing to try new things.

[chocl8guy]

Hey guys,
Just noticed your replies now. Sorry for not checking sooner. Today, I had my 5th of 6 instillations. I think they have been helpful, except for a stupid thing I did yesterday which threw me into a bad flare. I guess I got over-confident having felt good for 2 weeks and ate some things I shouldn't have.Now I'm suffering. Feeling the urge all the time. Yeah, mid-40's and feeling 70 due to the lack of sleep. Brain has gone foggy thanks to the sleep deprivation.
Thanks for the kind welcome. Any of you guys from Canada, by any chance?
Cheers,

[orange1]

Name: Orange 1
Age: 30
Diagnosed: 4 days ago
Current Meds: amitriptylin, hydroxyz, and levaquin (all before bed)


In the beginning (Pre without Meds):
1.) I urinate at least once every hour (sometimes more)
2.) Dull pain in my penis and left testical
3.) Sometimes I get a sharp pain on left side of penis when urinating
4.) My penis "withdraws" sometimes when I'm feeling the pain. Almost like jumping in cold water.

Currently (Post with Meds):
I have only been taking the meds for 3 days now. None of my syptoms have changed. I have to admit the pain is not near as bad as when I urinated the first time after my hydrodestintion.

Does anyone have similar symptoms? Please let me know if you do. I just want to do what ever I can do to make it stop!

[chocl8guy]

Hey Orange1,
Welcome aboard.
Your symptoms are not at all unusual, in fact there are many more symptoms as well. I notice you're not on Elmiron. Is there a reason why the doctor didn't prescribe it? Most of the drugs available for treating this disease take 6 months or more before taking effect. Aren't the drugs you're taking used for prostatitis as well?
As for the pain down there, try wearing looser underwera and pants. On a bad day, I can't tolerate wearing jeans.
Good luck and don't hesitate to ask any questions or PM me if you want ot chat off line.
Stay positive.

[pjay]

Age: 60

I don't know if I have IC. My current doc says OAB and has put me on detrol but so far (a few weeks) it hasn't helped.
I've had 10 yrs (off and on) of urinary problems, constant urge to go, burning. Around 2000 I went to a top doc in NYC and he ran tests and diagnosed BHP, recommended a TURP. I had a TUIP performed by a different doc and eventually was basically ok until last March.
The almost constant urge and often burning sensation returned and hasn't left. Out of desperation I wound up having the TURP about 5 weeks ago, but it did not cure me. I am unable to work and am now dealing with a lot of axiety and depression as well. I am taking an antidepressant but I wonder how long I can deal with this. This is no way to live. I'm still looking for an informed doc. Can anyone recommend someone in NJ?

Paul

[orange1]

Thanks for the welcome chocl8guy.

I spoke to my Dr. yesterday and asked him why he had not prescribed the Elmiron. He said he wanted to see how my syptoms were on my return visit in 2 weeks. I know one of my meds is used to fight bacterial infections. He said this was a precaution due to the procedure I had (hydrodestention and biopsy).

Thanks for the help. I really just need to sit down and do more research on our condition. It's just kind of a kick in the face. I've been health all my life, never had any surgery, and then this happens. I look at like this. Any day above ground is a good one!!

Hang in there pjay (Paul).

[chocl8guy]

Hey Paul,
Sounds like a frustrating ride. Though I'm from Canada, I've heard a lot about Dr. Robert Moldwin in New Hyde Park, New York 516-734-8500 in the Smith Institute Of Urology across from the Long Island Jewish Hospital. Do a ggogle search on him and you'll see that he is world renowned. It's probably the closest expert in IC to NJ as possible. Good luck.




Age: 60

I don't know if I have IC. My current doc says OAB and has put me on detrol but so far (a few weeks) it hasn't helped.
I've had 10 yrs (off and on) of urinary problems, constant urge to go, burning. Around 2000 I went to a top doc in NYC and he ran tests and diagnosed BHP, recommended a TURP. I had a TUIP performed by a different doc and eventually was basically ok until last March.
The almost constant urge and often burning sensation returned and hasn't left. Out of desperation I wound up having the TURP about 5 weeks ago, but it did not cure me. I am unable to work and am now dealing with a lot of axiety and depression as well. I am taking an antidepressant but I wonder how long I can deal with this. This is no way to live. I'm still looking for an informed doc. Can anyone recommend someone in NJ?

Paul

[Dudley]

Hi all. I just recently discovered this website and it rocks. It's very informative and is a great place to vent, share ideas, etc. Anyway, I'm trying to control my IC through diet. Elmiron seems to be a waste of time/money for me, plus it gave me headaches. Advil is helpful, though. I'm thinking of giving Cystoprotek (did I get that right ?) a try. Has anybody else tried it? What are your thoughts on it? Oh well. I try to positive. I've got two fantastic kids and a great bunch of friends. Things could be so much worse. Thanks for "listening" and I look forward to chatting in the future.

[chocl8guy]

Welcome Dudley,
You have a positive attitude and that will take you a long way. How long were you on Elmiron before dropping it? I used it for 4+ months before it started to show signs of benefit. It is costly but it's the only drug designed for this disease. Cystoprotek, I believe, is Quercetin,which people have reported good things about. I tried quercetin but stopped because I was taking too many things and couldn't determine what was helping and what wasn't. The ic diet is by far the most important thing for me. It's a stricter diet than someone trying to lose 50lbs but it is a must to follow. You'll figure out what you can tolerate and what causes flares. Good luck and keep posting.

[.........*sigh*]

Age: 20

Slight urinary frequency. Havn't really had any bad frequency lately. Been doing accupuncture and Chinese herbal medicine and all my pelvic pains have dissapeared for about a year. If I have bad frequency, after getting some accupuncture done, the frequency goes away. I've been doing so much better than when I was on Elmiron.

[strobers]

Note from ICNDonna: This is only one person's opinion and should not be used as a guideline for treatment. While I'm very glad he is feeling better, it's extremely important that we work with our physicians on treatments and that we keep our medical professionals advised about all herbs we are taking and about any kind of special diets we do.





I've been dealing with this thing for almost 18 months and consider myself fairly knowledgable about this disease and everything else related to it including: prostititis, pelvic pain syndrome, pelvic floor dysfunction, ect. Although everyone has different symptoms I have found that there are basic interventions that can be used to help just about everyone; some more than others. This is what has helped me.

The majority of people who suffer with this are anxiety prone individuals who think too much and are prone to catastrophic thinking. Therefore, dealing with this is one of the most important things that you can do to help you deal with the disease itself. Some recommendations are daily use of infer red sauna treatments, yoga, acupuncture, deep breathing, detox baths, mini-trampoline, stretching. I do all these things and they all help immensely; particularly the infer red sauna treatments. The more relaxed you are, the less the disease will matter. Conversely, the more you think about it, the worst it will feel. You can literally make yourself sick. I'm in the process of saving up money to buy my own sauna. Of everything I've tried, the infer red sauna has been the most useful. 90% of the time if I'm flaring or just feeling uncomfortable 1/2 hour in the sauna will decrease my pain 70 or 80% and on a few occasions when I have just felt that uncomfortable feeling of needed to urinate and mild irritation/inflammation it has completely gone away.

Finding something you love to do, that fullfills you, is also extremely important. I love photography and go out and shoot as often as I can. When you focus on something externally that brings you a lot of joy, you don't have the time or inclination to to look inwards and feel sorry for yourself. On the same subject ask yourself if you feel fullfilled in your job or you hate getting up in the morning and dread the commute to work. I know a person who had IC for ten years and cured herself in a week when she quit her job and did something that really, truely made her happy.

Check your bodies level of vitamins, amino acids, and everything else that may be out of balance and get them in balance with diet and supplements. (Best place on the planet to get supplements, iherb.com; inexpensive and fast shipping) The best more comprehensive test you can take is the cardio-ion panel. It measures, I believe, 130 different body functions. You can't expect to get well if your body is lacking in specific nutrients. It's expensive, but you can't put a price on health.

I also believe that just about everyone can benefit from PT as most people have a tight pelvic floor due to not only the anxiety inherent in their overall personality, but the fact that they clench their pelvic floor due to the pain and stress of daily living. However, not all PT's are the same. You have to have one that specializes in pelvic floor dysfunction. From everything I have read and researched it seems that men especially have issues with their pelvic floor, particualrly when they have pain in their testies,penis, perinium, and other localized area pain.

Supplements are important too. I have tried all of them. At this point I am taking Aloe Vera caps, Quarcitin, Vit. E, Niacin, Mangesium, Zinc and MSM. I vary the amount and skip doses. Supplements, like prescription drugs, do not cure, but they help decrease symptoms. It's important that you start off with one supplement for at least two weeks to see how you feel and to see if it flares you. If it does not work, try another one. This is what I did until I figured out which ones seemed to help, at which point I combined them.

Diet is huge. We all know this. I am currently on a microbiotic diet. I eat no meat, dairy, or sweets. I bascially live off of grains, veggies, sea veggies (for minerals) and some nuts. I've been eating like this for about a month. I was on another diet that my nutrionist put me on, but the Inflomax I was taking that she recommended made me flare. This diet seems to help a lot. The only thing I've added is fish oil that I take daily. Look into it. It may seem boring at first, but once you learn the different ways to cook macrobiotically, it's not that bad. If you read up on it you will find that many people who have had fourth stage cancer have put themselves on this diet and cured their disease. I believe the reason is that this diet is very alkaline, which helps the body heal itself. I believe it can also heal other diseases as well. I'm going to continue this until December and then see how I'm feeling.

The spiritual side of a person also has to be addressed. I've noticed that many people who have pelvic diseases, actually any type of chronic disease, have a lot of negative emotions that they carry around and feed on, such as resentment, anger, guilt, and envy. These emotions, I feel, can actually cause chronic pain and disease and also perpetuate it. This is especially true with anger. If you are carrying around a lot of negative baggage, my recommendation is that you cleanse your spirit by using TAT, EFT, and other types of psychological energy medicine. You might also try writing a daily journal. If you are really honest with yourself it will give you a lot of great insight into yourself. Also read the book, "The Mind and Body Connection" by Dr. Sarno. You will learn a lot and it may give you some insight on why you are chronically ill.

Other books I recommend are anything by Dr. Sherry Rogers. I've read most of her books, that include "Detox or Die," "Pain Free in Six Weeks" and "You Are What You Ate," the latter a book that is an introduction to macrobiotic eating.

The last thing I want to point out is that you are your own doctor. Too many people depend on their doctor as if they were their personal savior. They should be your ally and support, not the one making decisions for you. Most of us actually probably know more than our physician when it comes to this disease. I saw five uros total in the course of my initial treatment and when I brought up anything that was cutting edge they looked at me with a confused look on their face. Invariably most of them would say that before they tried the intervention suggested that would need to investigate it because they had never heard of it. Although there are some exceptions, the vast majority of doctors only know what they were trained to know. From the standpoint of IC they know Elmiron, Elavil, and instills; at least that has been my experience. It wasn't until I took control of my treatment that I started making real progress. At this point I am 90% better than I was a year ago. I have had three days or so this month when I was actually completely normal.

To quote Dr. Rogers, "pain means inflammation and inflammation means reaction to or rejection of something" I think we all can be cured of this disease or any other chronic medical issue we may be dealing with. However, we have to find out what it is that is causing our body to react the way it is reacting. We have to be in tune with ourselves. The only way to do that is to do a personal inventory and work on correcting and putting into balance all the areas of our lives that may need their own healing. We can't heal just one part of ourselves, we have to heal all our parts. Only when everything is in balance will we be in balance.

You will not be healed by resorting to surgery or taking drugs. Surgery has it's place, but I firmly believe that 95% of all disease is due to environmental conditions and nutrional deficincies. Surgery and drugs just mask the problem. I'll be the first to admit that when I'm in a real bad flare and nothing else more holistic is working, I'll pop a a Vic and a Klonopin. I'm not going to suffer. But the healthier I get in mind, body and spirit, the less I have had to resort to this. I've had to use drugs maybe two times in this last 2 1/2 months and I hope to get to the point that I never have to use them.

I think that their is a cure for this and other chronic diseases. People may feel I'm being overly optomistic, but I really feel that each of us has the answer to our particular set and sub-set of problems. It's just a matter of doing what is necessary to find the answer. If you are willing to do that, you will be well again some day.

I truely believe that.

[webslave]

To stobers above, Sarno has a few adherents, and does try to address the mental issues, but I prefer a more all encompassing solution.

[hdwadman]

Hi guys. My symptoms sound the same as what I've been reading here. The List:


1. Constant pain in my lower abdomen/groin area.
2. constant burning in my abdomen, and sometimes my groin.
3. urinary urgency.
4. Urinary frequency.
5. Intermittent burning pain with urination.
6. Intermittent pain at the base of my penis.
7. Intermittent testicular pain.
8. constant fatigue from lack of sleep.
9. Intermittent painful ejaculations.
10. The feeling that I haven't emptied my bladder when I urinate.
11. Weak stream.
12. Smaller/softer erections
13. Increased pain and burning with a full bladder.
14. Intermittent difficulty urinating.
15. Rarely blood im my urine.
16. Increased pain/burning with activity
17. Constantly feeling the need to urinate.

I may be forgetting some, but I haven't slept and these are the ones that bother me the most!
DeWayne

[strobers]

Hi guys. My symptoms sound the same as what I've been reading here. The List:


1. Constant pain in my lower abdomen/groin area.
2. constant burning in my abdomen, and sometimes my groin.
3. urinary urgency.
4. Urinary frequency.
5. Intermittent burning pain with urination.
6. Intermittent pain at the base of my penis.
7. Intermittent testicular pain.
8. constant fatigue from lack of sleep.
9. Intermittent painful ejaculations.
10. The feeling that I haven't emptied my bladder when I urinate.
11. Weak stream.
12. Smaller/softer erections
13. Increased pain and burning with a full bladder.
14. Intermittent difficulty urinating.
15. Rarely blood im my urine.
16. Increased pain/burning with activity
17. Constantly feeling the need to urinate.

I may be forgetting some, but I haven't slept and these are the ones that bother me the most!
DeWayne


Good Morning DeWayne, have you been officially diagnosed? I'm sorry to hear that you aren't doing that well. You have a lot of symptoms. Besides coming here, I would also suggest that you sign up on the chronicprostititis web site. You are having a lot of referred pain, much of which may be due to a very tight pelvic floor. On that website you will be able to learn a lot of things about this condition. I'm a member of both groups and have learned a lot from each one. Good luck to you.

S

[hdwadman]

I have a tentative diagnosis from my urologist pending a cystoscopy. I have started the IC diet, and am trying to change my lifestyle, but I have been in so much pain for the last few months that I just cant seem to function.

[strobers]

I have a tentative diagnosis from my urologist pending a cystoscopy. I have started the IC diet, and am trying to change my lifestyle, but I have been in so much pain for the last few months that I just cant seem to function.

I know it's bad and I feel for you. I'm not well either, but functioning. Just follow the food protocol stringently, and keep yourself informed of treatments by reading everything you can. There is a lot of good information on this site as well as the one I recommended to you earlier.

As hard as it may seem right now, things will get better. They always do. It's hard to think they will sometimes, but it helps tremendously if you don't think about the future or the past and just focus on the moment because really that is all any of us have.

Keep us posted on how you are feeling. We are here for you.

[Cadyfatcat]

The first couple of months are going to be rough but you should get much better with the right treatment - especially if you caught it early on. These forums have a wealth of information, and you may want to consider limiting your diet even more than you have already if you want quicker results. Absolutely no alcohol. You should consider joining the chronic prostatitis forum too, as it is very similar pathology but male specific. Have you tried doing any groin stretches? What brought on your symptoms?

[hdwadman]

Stretching increases the pain. I'm not really sure what brought the symptoms on. I've been getting treated for a shoulder injury, and the only thing I can think of is that right after an MRI with contrast die the pain started. I've been wondering if the die maybe got things inflamed.

[ouch_a_lot]

Hello there. We are all struggling in some shape or form with this disease or related conditions. I am up and down emotionaly like a yo yo. The one thing I have noticed in a year on these boards is that people come and go as they find relief / treatments that work for them. THere is a hardcore of helpers out there to give good advice. Listen to it and you will find something. I am still looking, but I hope that an answer is just around the corner for us all.

Ouch.

[mrmcmoe]

Hi Guys, it is good to find this area with input from men. My husband was diagnosed a year ago with IC. I sent him to the doctor because he was having serious pain during sex. I suspect he had other pain too, but we didn't put it all together for a while. The doc diagnosed him (after some testing) with IC and put him on Elmiron 2x a day and Udamin (a prescription vitamin) as well. We immediately started using the IC diet. A year later, he went in for a checkup ironically following a flare. Doc said he was doing very well, no more Elmiron and continue with the Udamin. Interestingly, he had run out of Udamin a week before his appointment, then had the flare, we immediately backpedalled into strictly IC diet, got him back on the Udamin and by the time he saw the Doc again, he was doing okay. It seems the flares are triggered, for him, by food. So guys we need some help. I read alot that no one can really tolerate alcohol. Is there any cocktail with acceptable rum or vodka that anyone is enjoying? It's a last ditch effort to find an evening destressor before eliminating that as well. He had been having rum with soda and now is having another flare. So we know soda is definately problematic. I did pick up the prelief for times when we eat dinner out. Hopefully that will work. He's having alot of - I think - muscular pain? His hip hurts alot when he's driving in his truck. He has a physical job with lots of moving, lifting, bending. When he has a flare it hurts to sit a long time and his sides are sore. Overall he's pretty healthy, just taking Udamin, nothing else. Generally he doesn't even take tylenol. I almost forgot, if you guys take sandwiches for lunch, what can you put on them if you can't eat mayo or mustard? Thanks for taking the time to read all this and thanks too for your help. We are learning alot in here.

[tmog]

He's having alot of - I think - muscular pain? His hip hurts alot when he's driving in his truck.

Yes, ever since I started going to the Uro I started having hip pain, pain in left buttocks/back of thigh and Perineum pain. It makes sitting down more uncomfortable. Now, I'm having to sit on additional padding I've made using a folded comforter or a pillow. Most men don't have to make these types of accommodations. [LOL]
Now, I'm having to pamper myself just to get comfortable in my own skin. Taking warm bubble baths, sit to pee, watch my diet. "Man! I feel like a woman!" [LOL]

mrmcmoe, I have to say that I commend you for supporting your husband with his disease. I know that he appreciates you for all you do. I wish I could be that lucky. I have no support. No significant other! No one cares.
Take Care
Garth

[chocl8guy]

For what it's worth, I also get pain in the perinium and rectal area. I avoid wearing stiff pants such as jeans because it puts too much pressure there, especially when I'm in a flare. I find the occassional beer is tolerable but otherwise no hard stuff and definitely no soda. It's hard to adjust to this but water is really the only thing I drink. Diet, as you figured out is key in controlling this thing. My wife has been amazing and watches the ingredients. I feel bad that I have imposed this on her since she does the cooking.
Feel free to pm me if yo have any personal questions or advice you'd like.

[tmog]

For what it's worth, I also get pain in the perinium and rectal area. I avoid wearing stiff pants such as jeans because it puts too much pressure there, especially when I'm in a flare.

Man, I know what you mean. I'm wearing athletic/jogging suits & sweatpants most of the time to stay in my comfort zone.

[BluesCrew1]

Hi Guys, it is good to find this area with input from men. My husband was diagnosed a year ago with IC. I sent him to the doctor because he was having serious pain during sex. I suspect he had other pain too, but we didn't put it all together for a while. The doc diagnosed him (after some testing) with IC and put him on Elmiron 2x a day and Udamin (a prescription vitamin) as well. We immediately started using the IC diet. A year later, he went in for a checkup ironically following a flare. Doc said he was doing very well, no more Elmiron and continue with the Udamin. Interestingly, he had run out of Udamin a week before his appointment, then had the flare, we immediately backpedalled into strictly IC diet, got him back on the Udamin and by the time he saw the Doc again, he was doing okay. It seems the flares are triggered, for him, by food. So guys we need some help. I read alot that no one can really tolerate alcohol. Is there any cocktail with acceptable rum or vodka that anyone is enjoying? It's a last ditch effort to find an evening destressor before eliminating that as well. He had been having rum with soda and now is having another flare. So we know soda is definately problematic. I did pick up the prelief for times when we eat dinner out. Hopefully that will work. He's having alot of - I think - muscular pain? His hip hurts alot when he's driving in his truck. He has a physical job with lots of moving, lifting, bending. When he has a flare it hurts to sit a long time and his sides are sore. Overall he's pretty healthy, just taking Udamin, nothing else. Generally he doesn't even take tylenol. I almost forgot, if you guys take sandwiches for lunch, what can you put on them if you can't eat mayo or mustard? Thanks for taking the time to read all this and thanks too for your help. We are learning alot in here.

Sad to hear of the pain symptoms, surprised that there is a multivitamin that seems to be tolerated. My Urologist has not suggested that for me, does not believe Elmiron really helps, either. But, Iam going to check on the Udamin you mention. Thanks.

As for the pelvic pain, the onset of IC triggered pelvic floor dysfunction as well. The PFD took about a year to be understood and diagnosed. I had 3 months of physical therapy, learned to do certain exercises and stretches to strengthen and lengthen the pelvic floor muscles. But, if I lay off of these for 3 or 4 days, the pain returns. You have to stay after it. My Uro has also suggested that I try an InterStim from Medtronics - the website listed on they brochure is: www.bladderdevice.com. This is an implanted device somewhat like a pacemaker that uses low levels of electrical stimulation to counteract the clinching (from having the feeling like you have to pee), which is a largely involuntary muscle reaction. I also called a "Patient Ambassador" to discuss this device. He has had one since 2006. He says it was life altering for him. I cannot say as I have not done the tiral yet. I am scheduled for hydrodistension with laser cautery (my doc does a good job with this compared with some of the negative stories I have read on this site). I get good relief for a couple of months afterwards and then it starts building to intolerable again. Any, this time, two weeks after, I go back to get this temporary InterStim - you wear the device on your belt and attach it to wires they insert into the lower back. During this time, the patient self adjusts the electrical flow to get the most comfort. Then, one to two weeks later they put in the implanted device. Sounded scary to me, so I did some checking up on it and it seems to be a legitament treatment for the PFD. It will not cure IC - my urologist was emphatic. However, the patient ambassador I talked to had been suffering with PFD since 1993, and he insisted that it changed his life. He no longer plans his day and travels around toilet locations ... for me, that was as good as it gets.

Sorry for the long post, but I just learned this information in the last week.

As for foods and alcohols, each patient seems to be different in this regard. If I have a flare and associated pain, my beer makes it no worse and actually gives me some relief from pain during urination. I don't drink a lot, but I have several in a week's time. However, it is my understanding that most folks with IC do not tolerate alcohol that well. So, I just may be fortunate in this way. As an engineer, if I can turn on the pain with a food, or turn it off by laying off of food or beverage, then I stop that food. So far, the worst actors have been vitamin C tablets, oranges, and orange juice. I still eat apples, but not everyday like I used to. Sometimes I eat 2 to 3 a week - and these are small. Cooked apples like applesauce seems to be okay for me.

My point above is to try a food. If you don't have increase in symptoms in the next several hours or the next day, try it again. If you get pain, get off of it, see if the pain goes away. If so, try it again. If the pain comes back, you have identified a trigger. This is one of the strongest approaches to problem solving production quality issues, and I have found that it is one of the best ways to identify your worst triggers.

In the end, we all just want to live as normal a life as possble.

I hope this helps at least a little bit.

BluesCrew1
Michigan

[chocl8guy]

If I may suggest, haveyour doctor look at the hip pain. It may be referred pain from the ic, but it may be something else entirely. Has he commented on this?



Yes, ever since I started going to the Uro I started having hip pain, pain in left buttocks/back of thigh and Perineum pain. It makes sitting down more uncomfortable. Now, I'm having to sit on additional padding I've made using a folded comforter or a pillow. Most men don't have to make these types of accommodations. [LOL]
Now, I'm having to pamper myself just to get comfortable in my own skin. Taking warm bubble baths, sit to pee, watch my diet. "Man! I feel like a woman!" [LOL]

mrmcmoe, I have to say that I commend you for supporting your husband with his disease. I know that he appreciates you for all you do. I wish I could be that lucky. I have no support. No significant other! No one cares.
Take Care
Garth

[BluesCrew1]

chocl8guy,

I absolutely agree with ICNDonna. My earlier comments were based on an assumption that you had been to the doctor. My family or primary care physician had no idea what to do with my Pelvic Floor Dysfunction pain. You need to be sure that there is no other cause.

A lot of tender loving care by my Physical Therapist, learning to understand the pain (see a book "A Headache in the Pelvis") and how to take best care of myself. I still have issues and occasionally get into trouble, but lots of very specific exercises and stretching have enabled me to manage that "sitting on golf balls" feeling. That is what mine was like and it was very severe. It felt like I was sitting on two golf balls, if you could imagine how bad that would hurt if you could not move them. I learned to do some of my own "trigger point release", but some of that was self taught.

There is also another new book on Pelvic Floor Dysfunction, but I do not recall the name. Maybe ICNDonna or someone else can remember.

However, the way my urologist determined it was PFD, was during a semi-annual "digital prostate exam" to insure that the prostate vault was remaining empty. I had prostate cancer and the area that the prostate used to fill, I guess they call that the prostate vault. Anyway, I had some bad to extreme pain when he inserted his finger (digit) into my rectum. Then by indiscretely feeling around he found bound up muscule tissue, etc, and sent me to physical therapy. The book I mentioned above really helped me come to understand more about it. You need a P.T. that more or less specializes in treating this condition. My uro only lets his patients see two different P.T.s' here in Detroit.

Anyway, I hope this is helpful.

BluesCrew1

[mrmcmoe]

Hi Guys, Thanks so much for responding and giving us your time and knowledge. We appreciate it very much. My husband had a 3 hour drive today (round trip) I lent him a gel seat I use for back problems while driving. He said he didn't have any pain in his hip while using that either way. So, that's a good thing. I bought the gel seat off the internet for about $60 if anyone is interested I can find and post the link for that. Regarding the Udamin prescription, I tried to find information on the web about it and couldn't. The prescription info that comes with it doesn't say anything either so I asked the pharmacist about it. He said that vitamins come in different levels of ingredients. Below an FDA threshold is over the counter. Amounts above that threshold are prescription. So, essentially, this is a higher potency vitamin. The interesting fact is that when we ran out and he didn't take it for a week - he had a flare. That, of course, was coupled with cheating on his diet a bit. In any case, once he went back on the diet and started those vitamins again, his pain subsided. Hopefully this is helpful to you. Also, the Elmiron helped him greatly in the beginning. I do know he suffered for about a year before seeing a doctor.
Thanks again for sharing, I know none of this is fun. I do appreciate your knowledge and hopefully can share some helpful stuff on this end as well.
D.

[chocl8guy]

My uro doesn't really believe in PFD and that the exercises can cause other complications. I don't really agree with him but you have to tread carefully with these guys. Some days, my perinium area is so sore, like a muscular discomfort. What do you guys think?



chocl8guy,

I absolutely agree with ICNDonna. My earlier comments were based on an assumption that you had been to the doctor. My family or primary care physician had no idea what to do with my Pelvic Floor Dysfunction pain. You need to be sure that there is no other cause.

A lot of tender loving care by my Physical Therapist, learning to understand the pain (see a book "A Headache in the Pelvis") and how to take best care of myself. I still have issues and occasionally get into trouble, but lots of very specific exercises and stretching have enabled me to manage that "sitting on golf balls" feeling. That is what mine was like and it was very severe. It felt like I was sitting on two golf balls, if you could imagine how bad that would hurt if you could not move them. I learned to do some of my own "trigger point release", but some of that was self taught.

There is also another new book on Pelvic Floor Dysfunction, but I do not recall the name. Maybe ICNDonna or someone else can remember.

However, the way my urologist determined it was PFD, was during a semi-annual "digital prostate exam" to insure that the prostate vault was remaining empty. I had prostate cancer and the area that the prostate used to fill, I guess they call that the prostate vault. Anyway, I had some bad to extreme pain when he inserted his finger (digit) into my rectum. Then by indiscretely feeling around he found bound up muscule tissue, etc, and sent me to physical therapy. The book I mentioned above really helped me come to understand more about it. You need a P.T. that more or less specializes in treating this condition. My uro only lets his patients see two different P.T.s' here in Detroit.

Anyway, I hope this is helpful.

BluesCrew1

[tmog]

yes yes yes, that is it.. "felt like I was sitting on two golf balls" feeling! Oh I can relate to that feeling. I'm thinking about investing in a gel cushion to take with me in case I have to sit in one of those metal fold out chairs! Ouch! If I had to sit in one of those again, I'd be hurting bad for a week. I just hate having to go through life having to make myself feel better & comfortable. It's becoming a real challenge and making my OCD worse. Depressing.
Some days I feel like I want to get on disability/SSI and just stay at home and not get out any more. Retire at the age of 40. Not only do I deal with IC but I also deal with Anxiety Disorder & Panic Attacks. Life sucks...
Bye - Night

[mrmcmoe]

Here is the link for the gel cushion I mentioned. The price has come down considerably, which is good.

If you have leather seats, don't put leather cleaner on them and then the cushion, you'll slide around alot! LOL

[tmog]

Here is the link for the gel cushion I mentioned. The price has come down considerably, which is good.

If you have leather seats, don't put leather cleaner on them and then the cushion, you'll slide around alot! LOL

Yes that's a better priced gel cushion then I found online at
They wanted $50.. much more than the one you posted a link to.
Thanks

[Paper_Tiger]

42 year old white male, diagnosed October 2008 via DVIU (ouch!!)
Currently on Elmiron 2x per day, down from 3x per day for the first 90 days. Occasionally throw the extra dose back in when having a 'bad streak'.
Tried Sanctura and subsequently Oxytrol for bladder retraining - but discontinued each because of constipation side effects.
From reading other accounts, especially the ladies, would characterize my condition as relatively mild at this point.

History:

My symptoms progressed VERY slowly over a LONG period of time. By my late twenties, the days of going to the restroom and 'peeing like a racehorse' were beginning to wane. It was around 35 or 36 years old that my nocturia became bothersome enough to say something to my doctor. Doctor suggested it was kind of early for BPH, but try some saw palmetto and see if it helps. Placebo effect worked for about 18 months and went back to my doctor to complain saw palmetto was no longer working to stop the nocturia. At age 38, he announced that my prostate seemed a little enlarged and put me on Flomax. Placebo effect worked for about 18 months, but Flomax side effects were bothersome - including some erectile dysfunction. Was put briefly on another beta blocker (insurance wouldn't cover going directly to another non-generic) before being prescribed Avodart. Placebo effect worked for a short time, but at least Avodart didn't have the erectile side effects. All my PSA tests were normal. Went in for my annual physical at age 41. Primary doctor was not in the office, so the PA checked me out. She said "your prostate is a normal size - don't know why the Doctor said it was enlarged. maybe the Avodart shrunk it, but if your medication is not working on your nocturia, time to go see the specialist." Whodathunk: My PA was better than my PCP.

Specialist asked me about any surgical history. I told him about a scope going into my bladder for an infection when I was 10 years old. He told me that pediatric procedures carry greater risk of creating urethral stricture, so I was scheduled for a DVIU. When he got in there, he found no stricture, but noticed the lining of my bladder appeared irritated, and took a biopsy. Bingo. IC diagnosis.. after thinking I had early onset of BPH for 5 years :-(

Symptoms:

Never really cared about urination frequency during the day because it never really had an impact on my personal or professional life. Can sometimes go 3-5 hours at a time without visiting the restroom. When it's time, though, it hits with very sudden urgency. It's like one minute you're fine, and the next it suddenly feels like you haven't gone for two days. It can be hard to start sometimes, and sometimes the sensation of urination is.. well.. more of a 'good kind of pain' than it should be.. does that make any sense? an almost a burning sensation.. and I let out several long sighs and sometimes moans (when I know nobody can hear me). And then I am glad when its done. Almost like the satisfaction of having taken a large dump (please excuse my crass reference).

I have noticed a marked increase in the 'intensity' of my orgasms over the past couple of months. I wouldn't say that it is necessarily painful, but a certain 'sharpness' to the event is now quite noticeable and consistent. I have some anxiety about where that trend is going. A small amount of pain can intensify orgasms.. but there is a threshold there I don't want it to cross.. and I'm not sure how long it might be before it does.. As I continue to get more vocal during orgasm, I keep telling my wife she must be improving her technique :-)

My biggest issue is nocturia. All I can say is thank God my wife is a heavy sleeper. I wake up every 60-90 minutes every night. You can set your clock by it. I cannot fall back asleep unless I void. When I'm very very lucky, I'll get in a 2 or 2.5 hour stretch. When I am unlucky, the daily anxieties of life will prevent me from falling asleep between void cycles. In fact, the other night, I was tossing and turning and worrying that I wouldn't get any sleep, and then I fell asleep long enough to have a nightmare about tossing and turning and not falling asleep. Pure torture. The only exception to my nocturia - which will be a shock to most here - is when I consume a large quantity of alcohol. 10 shots vodka = 8 hours continuous sleep. Unfortunately, I'm worried about that trend, too.

Diet and exercise:

I work out 2 hours per day, 5 days per week to make sure I'm really tired when it's time to go to bed. But I've been doing that for 20 years. I wonder what would happen if I ever stopped? For the most part, my symptoms haven't been bad enough to significantly modify my diet. I gave up coffee, because it seemed to be worse than tea.. but I still drink tea and don't want to give it up.. especially real Chinese Oolong :-) I spent too much time in Asia. I had a bad experience with Asparagus recently, but a second serving about a month later had no effect.. can't figure that out.. also - I don't drink soda.. but that was true even before IC.. never going to give up chocolate, though, and I relish capsaicin in all it's forms. Bottom line: I'm a Foodie. Really passionate about food. Have no intention of pursuing the 'elimination diet' until this IC thing is damn near killing me.

Anyway, thanks for providing a place to vent and share :rant:. The impact to quality of life is something we can ALL relate to, despite the many variants we all experience.

[strobers]

42 year old white male, diagnosed October 2008 via DVIU (ouch!!)
Currently on Elmiron 2x per day, down from 3x per day for the first 90 days. Occasionally throw the extra dose back in when having a 'bad streak'.
Tried Sanctura and subsequently Oxytrol for bladder retraining - but discontinued each because of constipation side effects.
From reading other accounts, especially the ladies, would characterize my condition as relatively mild at this point.

History:

My symptoms progressed VERY slowly over a LONG period of time. By my late twenties, the days of going to the restroom and 'peeing like a racehorse' were beginning to wane. It was around 35 or 36 years old that my nocturia became bothersome enough to say something to my doctor. Doctor suggested it was kind of early for BPH, but try some saw palmetto and see if it helps. Placebo effect worked for about 18 months and went back to my doctor to complain saw palmetto was no longer working to stop the nocturia. At age 38, he announced that my prostate seemed a little enlarged and put me on Flomax. Placebo effect worked for about 18 months, but Flomax side effects were bothersome - including some erectile dysfunction. Was put briefly on another beta blocker (insurance wouldn't cover going directly to another non-generic) before being prescribed Avodart. Placebo effect worked for a short time, but at least Avodart didn't have the erectile side effects. All my PSA tests were normal. Went in for my annual physical at age 41. Primary doctor was not in the office, so the PA checked me out. She said "your prostate is a normal size - don't know why the Doctor said it was enlarged. maybe the Avodart shrunk it, but if your medication is not working on your nocturia, time to go see the specialist." Whodathunk: My PA was better than my PCP.

Specialist asked me about any surgical history. I told him about a scope going into my bladder for an infection when I was 10 years old. He told me that pediatric procedures carry greater risk of creating urethral stricture, so I was scheduled for a DVIU. When he got in there, he found no stricture, but noticed the lining of my bladder appeared irritated, and took a biopsy. Bingo. IC diagnosis.. after thinking I had early onset of BPH for 5 years :-(

Symptoms:

Never really cared about urination frequency during the day because it never really had an impact on my personal or professional life. Can sometimes go 3-5 hours at a time without visiting the restroom. When it's time, though, it hits with very sudden urgency. It's like one minute you're fine, and the next it suddenly feels like you haven't gone for two days. It can be hard to start sometimes, and sometimes the sensation of urination is.. well.. more of a 'good kind of pain' than it should be.. does that make any sense? an almost a burning sensation.. and I let out several long sighs and sometimes moans (when I know nobody can hear me). And then I am glad when its done. Almost like the satisfaction of having taken a large dump (please excuse my crass reference).

I have noticed a marked increase in the 'intensity' of my orgasms over the past couple of months. I wouldn't say that it is necessarily painful, but a certain 'sharpness' to the event is now quite noticeable and consistent. I have some anxiety about where that trend is going. A small amount of pain can intensify orgasms.. but there is a threshold there I don't want it to cross.. and I'm not sure how long it might be before it does.. As I continue to get more vocal during orgasm, I keep telling my wife she must be improving her technique :-)

My biggest issue is nocturia. All I can say is thank God my wife is a heavy sleeper. I wake up every 60-90 minutes every night. You can set your clock by it. I cannot fall back asleep unless I void. When I'm very very lucky, I'll get in a 2 or 2.5 hour stretch. When I am unlucky, the daily anxieties of life will prevent me from falling asleep between void cycles. In fact, the other night, I was tossing and turning and worrying that I wouldn't get any sleep, and then I fell asleep long enough to have a nightmare about tossing and turning and not falling asleep. Pure torture. The only exception to my nocturia - which will be a shock to most here - is when I consume a large quantity of alcohol. 10 shots vodka = 8 hours continuous sleep. Unfortunately, I'm worried about that trend, too.

Diet and exercise:

I work out 2 hours per day, 5 days per week to make sure I'm really tired when it's time to go to bed. But I've been doing that for 20 years. I wonder what would happen if I ever stopped? For the most part, my symptoms haven't been bad enough to significantly modify my diet. I gave up coffee, because it seemed to be worse than tea.. but I still drink tea and don't want to give it up.. especially real Chinese Oolong :-) I spent too much time in Asia. I had a bad experience with Asparagus recently, but a second serving about a month later had no effect.. can't figure that out.. also - I don't drink soda.. but that was true even before IC.. never going to give up chocolate, though, and I relish capsaicin in all it's forms. Bottom line: I'm a Foodie. Really passionate about food. Have no intention of pursuing the 'elimination diet' until this IC thing is damn near killing me.

Anyway, thanks for providing a place to vent and share :rant:. The impact to quality of life is something we can ALL relate to, despite the many variants we all experience.

For what it's worth. Personally, I would re-think your intention of continuing to eat whatever you feel like. If your IC evolves into something worst you are going to be praying to God some nights asking him to let you die in your sleep. This isn't a disease to fool around it. Although I admire your moxie to a degree, you are cutting your nose to spite your face. I used to love food too. Now I live off of brown rice, millet, eggs, chicken, pasta, cashews, mozzarella cheese, organic milk, water and some breads. Yes, it can get boring. But I would rather be bored than live in hell.

[Paper_Tiger]

Thanks for your straightforward response, Strober. I do recognize this is serious business. I'm not 'thumbing my nose' at my disease.. I'm just not sure which comes first.. go through a life-changing elimination diet, or respond to the disease once it gives me a reason to. You see - waking up for continuous urgency to void at night is my primary manifestation of symptoms. I never really experience any severe pain. I'm not really bothered by my disease during the day. Nothing about variances in my eating habits seems to produce any variance in my nocturia - except for alcohol, which knocks me out. I suspect other hardcore sleeping drugs might help me too, I just don't like the idea of relying on those things. It's as simple as this: I'm not sure if I should be trying to fix what's not broke. Maybe I'm in for worse down the road. I would be interested in hearing from others about how 'progression' of the disease may have been for them..

Thanks!
PT

[strobers]

Thanks for your straightforward response, Strober. I do recognize this is serious business. I'm not 'thumbing my nose' at my disease.. I'm just not sure which comes first.. go through a life-changing elimination diet, or respond to the disease once it gives me a reason to. You see - waking up for continuous urgency to void at night is my primary manifestation of symptoms. I never really experience any severe pain. I'm not really bothered by my disease during the day. Nothing about variances in my eating habits seems to produce any variance in my nocturia - except for alcohol, which knocks me out. I suspect other hardcore sleeping drugs might help me too, I just don't like the idea of relying on those things. It's as simple as this: I'm not sure if I should be trying to fix what's not broke. Maybe I'm in for worse down the road. I would be interested in hearing from others about how 'progression' of the disease may have been for them..

Thanks!
PT
If you were diagnosed with IC than in a sense you are already broken, but luckily not to the point that you are running to the bathroom 50 or 60 times per day like others do. The best thing you can do is take care of yourself to prevent things from getting worst. The last thing you want to do is slip into a flare just because you like food. I made that mistake once. I got cocky and ate some sweet and sour shrimp. Man, was it delicious. 20 minutes later I was in a major flare and it lasted three months. Obviously, it wasn't worth it.

I just got done eating a bean and egg sandwich with mozzarella cheese. It was pretty good. Yes, I eat them several times a week, but when I'm done, I'm full, not full and soaking in a tub and crying.

I'm not well, but I am able to work and concentrate and for the most part I have my life back. However, I know how precarious things are and I always keep that in mind when I'm having a good day and thinking I can go eat some No No Foods.

Enjoy the fact that you aren't that bad, but keep in mind that this disease does not follow directions. It does what it wants when it wants and if you give it a reason to rear its ugly head by virtue of making poor health decisions than you will pay the piper.

However, what you do is up to you. I'm only hear to offer suggestions based on what I've gone through since April 6, 2007.

[tmog]

Hi PT

Welcome. I am glad you joined us on this IC Forum. I can relate to you what you've said in your first posting and I don't feel you've discounted your disease at all. I'm also glad you are not running to the bathroom 50 or 60 times a day. Whew! That would kill me if I had frequency to that degree. I go about 8 to 10 times a day usually. At night I get up at 1am, 2am, 3am & 4:30. Then I'm down for the night until I peal myself off my bed at noon. I've made some diet modifications but to a minimal. For instance, eliminated major triggers like citrus fruit/Fruit juices. Colas. Tomatoes.

[Paper_Tiger]

Hey Tmog - thanks for that.. sounds like our manifestation is relatively similar.. it seems to back off closer to morning.. although I got up 5 times last night :-( No sleep leaves me dazed and confused in the morning. Has anyone here tried the freeze dried aloe vera that has been mentioned? Does it work? I have historically had great results with placebos.. seriously..

[chocl8guy]

Hey PT, welcome to the forum. It's always great to have a new guy sign up...we are a rare breed on this forum. I can't imagine how you function during the day with such frequency at night. I usually go only once or twice if I'm not in a flare. I'm a bad sleeper to begin with so I always feel tired regardless of the night I had.
By no means am I passing judgement but I can't see how the vodka can be a good thing for the bladder. You don't want to develop a dependency on sleeping pills but the vodka thing can be as much of a crutch. Admittedly, I need help sleeping and use Ativan.
I also can't stress enough how important the diet is. That was probably the most difficult thing to adjust to. Look at my handle, for example, I love chocolate. Once you find the real triggers, you may be able to adapt.
This is not meant to judge but you have to take this thing seriously. They don't know if it's progressive but you can live thru the present in better condition. Any questions or advice, please feel free to ask or pm me. I've been suffering for a while and it's hard not to let this define you.
Regards

[GoldSeals]

42 year old white male, diagnosed October 2008 via DVIU (ouch!!)
Currently on Elmiron 2x per day, down from 3x per day for the first 90 days. Occasionally throw the extra dose back in when having a 'bad streak'.
Tried Sanctura and subsequently Oxytrol for bladder retraining - but discontinued each because of constipation side effects.
From reading other accounts, especially the ladies, would characterize my condition as relatively mild at this point.

History:

My symptoms progressed VERY slowly over a LONG period of time. By my late twenties, the days of going to the restroom and 'peeing like a racehorse' were beginning to wane. It was around 35 or 36 years old that my nocturia became bothersome enough to say something to my doctor. Doctor suggested it was kind of early for BPH, but try some saw palmetto and see if it helps. Placebo effect worked for about 18 months and went back to my doctor to complain saw palmetto was no longer working to stop the nocturia. At age 38, he announced that my prostate seemed a little enlarged and put me on Flomax. Placebo effect worked for about 18 months, but Flomax side effects were bothersome - including some erectile dysfunction. Was put briefly on another beta blocker (insurance wouldn't cover going directly to another non-generic) before being prescribed Avodart. Placebo effect worked for a short time, but at least Avodart didn't have the erectile side effects. All my PSA tests were normal. Went in for my annual physical at age 41. Primary doctor was not in the office, so the PA checked me out. She said "your prostate is a normal size - don't know why the Doctor said it was enlarged. maybe the Avodart shrunk it, but if your medication is not working on your nocturia, time to go see the specialist." Whodathunk: My PA was better than my PCP.

Specialist asked me about any surgical history. I told him about a scope going into my bladder for an infection when I was 10 years old. He told me that pediatric procedures carry greater risk of creating urethral stricture, so I was scheduled for a DVIU. When he got in there, he found no stricture, but noticed the lining of my bladder appeared irritated, and took a biopsy. Bingo. IC diagnosis.. after thinking I had early onset of BPH for 5 years :-(

Symptoms:

Never really cared about urination frequency during the day because it never really had an impact on my personal or professional life. Can sometimes go 3-5 hours at a time without visiting the restroom. When it's time, though, it hits with very sudden urgency. It's like one minute you're fine, and the next it suddenly feels like you haven't gone for two days. It can be hard to start sometimes, and sometimes the sensation of urination is.. well.. more of a 'good kind of pain' than it should be.. does that make any sense? an almost a burning sensation.. and I let out several long sighs and sometimes moans (when I know nobody can hear me). And then I am glad when its done. Almost like the satisfaction of having taken a large dump (please excuse my crass reference).

I have noticed a marked increase in the 'intensity' of my orgasms over the past couple of months. I wouldn't say that it is necessarily painful, but a certain 'sharpness' to the event is now quite noticeable and consistent. I have some anxiety about where that trend is going. A small amount of pain can intensify orgasms.. but there is a threshold there I don't want it to cross.. and I'm not sure how long it might be before it does.. As I continue to get more vocal during orgasm, I keep telling my wife she must be improving her technique :-)

My biggest issue is nocturia. All I can say is thank God my wife is a heavy sleeper. I wake up every 60-90 minutes every night. You can set your clock by it. I cannot fall back asleep unless I void. When I'm very very lucky, I'll get in a 2 or 2.5 hour stretch. When I am unlucky, the daily anxieties of life will prevent me from falling asleep between void cycles. In fact, the other night, I was tossing and turning and worrying that I wouldn't get any sleep, and then I fell asleep long enough to have a nightmare about tossing and turning and not falling asleep. Pure torture. The only exception to my nocturia - which will be a shock to most here - is when I consume a large quantity of alcohol. 10 shots vodka = 8 hours continuous sleep. Unfortunately, I'm worried about that trend, too.

Diet and exercise:

I work out 2 hours per day, 5 days per week to make sure I'm really tired when it's time to go to bed. But I've been doing that for 20 years. I wonder what would happen if I ever stopped? For the most part, my symptoms haven't been bad enough to significantly modify my diet. I gave up coffee, because it seemed to be worse than tea.. but I still drink tea and don't want to give it up.. especially real Chinese Oolong :-) I spent too much time in Asia. I had a bad experience with Asparagus recently, but a second serving about a month later had no effect.. can't figure that out.. also - I don't drink soda.. but that was true even before IC.. never going to give up chocolate, though, and I relish capsaicin in all it's forms. Bottom line: I'm a Foodie. Really passionate about food. Have no intention of pursuing the 'elimination diet' until this IC thing is damn near killing me.

Anyway, thanks for providing a place to vent and share :rant:. The impact to quality of life is something we can ALL relate to, despite the many variants we all experience.

I still believe that eventually every one thats dealing with IC will have their bladder removed surgically.I mean how long can you go on with out enjoying the food and the things you used to do.In one day that could change.There is only one cure now.That is have it removed.Then you can enjoy life again.I mean who is everyone trying to kid with all these so called temporary fixes.They are not a cure.So why suffer with all these so called diets

[ICNDonna]

My IC was diagnosed in 1975 --- that's 34 years ago! --- and I'm better than I was at the beginning. I have TWO diets I need to follow because I'm also diabetic, but I simply refuse to allow diet restrictions to rule/ruin my life.

Donna

[Darty17]

Hello Everyone!

25/M
Diagnosed with Cystitis last month, doc thinks it might be IC.

For the past year I have been having problems with my groin area. I was traveling in Eastern Europe and started having pain in my testicles and bad irritation at the tip of my penis. Also had achey pain above the groin; pubic region. Docs over there gave me Cipro which didn't seem to help. Pain got so bad that I cut my trip short and flew back to the US and straight to the ER. Doc there determined that I didn't have torsion and gave me a antibiotic shot and a RX for Doxycycline. Thought I had epididymitis. Local Urologist believed so too.

After a month-ish of Doxy, I was feeling much better......for a few months.

Same symptoms came back, so PCP gave me more Doxy. That helped for a while again. Came back AGAIN!

Finger exam determined that my prostate was inflamed and sore (Prostatitis). More doxy it is. Felt better.

Came back AGAIN! :cussing:

BUT this time not only was the prostate inflamed, I was having bad burning at the tip of my penis after ejaculation. About an hour afterwards it would burn for a couple hours. Agonizing pain. Occasionally it would burn a little after urination too. Not as bad as the ejaculate though.

Uro put me on uroxatral and Cipro. Helps a little. Finally decided to to a cysto on me (thank the Lord I was put to sleep).

He found Urethritis and Cystitis. Gave me 4 days or Urelle and told to keep on with Bactrim instead of Cipro.

SO: here is where I am right now:

Cysto confirmed cystitis.

Pain during/after sex at tip of penis. This happens sometimes, but the irritation sticks around for a little while. Very bothersome.

Once in a while I get up in the night to pee. NOT a common thing. But last week, I got up 5 times in the night.

I usually pee 3-5 times a day, though sometimes I feel like it's a full bladder and not much comes. Sensation of needing to go is fairly strong though.

Still some pains in the pubic area above the groin. Also pains sometimes in the "crease" of the leg between groin and thigh.


A little more about me: I also have:
Heart palpitations
Gout
Acid Reflux
Anxiety
Nerve pain in right ribs
Hemorrhoids
Semi-High cholesterol
AND recently diagnosed with early diabetes (i am 100lbs overweight)

What do you guys think? I am not really sure whats happening to me, but this keeps going in waves and doesnt seem to be getting any better.

HELP!:bow::bow::bow::bow::bow::bow::bow::bow:

[strobers]

Hello Everyone!

25/M
Diagnosed with Cystitis last month, doc thinks it might be IC.

For the past year I have been having problems with my groin area. I was traveling in Eastern Europe and started having pain in my testicles and bad irritation at the tip of my penis. Also had achey pain above the groin; pubic region. Docs over there gave me Cipro which didn't seem to help. Pain got so bad that I cut my trip short and flew back to the US and straight to the ER. Doc there determined that I didn't have torsion and gave me a antibiotic shot and a RX for Doxycycline. Thought I had epididymitis. Local Urologist believed so too.

After a month-ish of Doxy, I was feeling much better......for a few months.

Same symptoms came back, so PCP gave me more Doxy. That helped for a while again. Came back AGAIN!

Finger exam determined that my prostate was inflamed and sore (Prostatitis). More doxy it is. Felt better.

Came back AGAIN! :cussing:

BUT this time not only was the prostate inflamed, I was having bad burning at the tip of my penis after ejaculation. About an hour afterwards it would burn for a couple hours. Agonizing pain. Occasionally it would burn a little after urination too. Not as bad as the ejaculate though.

Uro put me on uroxatral and Cipro. Helps a little. Finally decided to to a cysto on me (thank the Lord I was put to sleep).

He found Urethritis and Cystitis. Gave me 4 days or Urelle and told to keep on with Bactrim instead of Cipro.

SO: here is where I am right now:

Cysto confirmed cystitis.

Pain during/after sex at tip of penis. This happens sometimes, but the irritation sticks around for a little while. Very bothersome.

Once in a while I get up in the night to pee. NOT a common thing. But last week, I got up 5 times in the night.

I usually pee 3-5 times a day, though sometimes I feel like it's a full bladder and not much comes. Sensation of needing to go is fairly strong though.

Still some pains in the pubic area above the groin. Also pains sometimes in the "crease" of the leg between groin and thigh.


A little more about me: I also have:
Heart palpitations
Gout
Acid Reflux
Anxiety
Nerve pain in right ribs
Hemorrhoids
Semi-High cholesterol
AND recently diagnosed with early diabetes (i am 100lbs overweight)

What do you guys think? I am not really sure whats happening to me, but this keeps going in waves and doesnt seem to be getting any better.

HELP!:bow::bow::bow::bow::bow::bow::bow::bow:


I've had pelvic problems off and on for more than two years. They label it all kinds of things; IC, CPPS, LUDE, prostititis, but basically it's all the same thing. Your nerves and muscles in your pelvic area are inflamed due to a number of things. Anxiety is a big component of this disease and it seems that your anxiety is through the roof. Get a handle on that and everything else will get better.

There is plenty of information on this board. First thing is go on an elimination diet, lose weight, get on some of the basic meds, find a doctor you trust and knows about IC/CPPS and religiously start following the protocols. You will eventually manage it, but be prepared for some really bad days and some relatively good ones. This disease waxes and wanes and you have to be prepared for all of the ups and downs. There is no cure, but many people go into remission at some point. Some don't. However, if you follow the guidelines, you will find that you can live a life of relative normalcy.

Good luck to you.

[tmog]

Hi Darty17:
Welcome to ICN forums, Glad you're here with us. Thanks for sharing your story. At such a young age of 25 it seems you have much to deal with and having anxiety doesn't help. I can def relate to how you feel being a male who deals with IC, constant anxiety & panic attacks. I'm alone and haven't developed a support system yet.

Since the last 3 months I've gotten into the habit of waking up with panic attacks in the wee hours of the morning to pee and calm myself down enough to go back to sleep. It was happening every night. 3 times a night. It really sucked bad! I wanted to die! I started to make adjustments in my diet more including eliminating coffee & all other caffeinated beverages, fruit, fruit juices and major trigger foods. I've noticed here lately that Prilosec (Omeprazole) & Zyrtec (cetirizine) has helped my bladder some.

Take Care..
BYE:pray::pray:

[Noraisha]

Age: 33
Never diagnosed w/ IC or prostatitis (still not sure which, both or something else)
Symptoms:10 plus yrs w/ urehtral burning AFTER urinating, feeling of needing to urinate almost immediately after urinating, sometimes frequency especially after a bowel movement. Depression/Anxiety due to these problems. Most recently an undescribeable feeling in my head like fog, not completely awake. Pain when sitting.

Past medications: months of abx, pyridium, vallium, muscle relaxers and all herbal remedies all w/ no effect.

Current medications: msm w/ glucosamine, ativan, atarax, cystaQ, flomax
still no effect. Only been doing these for about 2 to 3 weeks.

Just as confused as ever and just praying to find something to help.
You sound just like me. Mine under remission email me brawnypenny@gmail.com

[Darty17]

Thank you for your replies. It's good to find others like me. I have a small support network where I am, but they don't understand. Heck, even my Uro is 250 miles away!

My doc just put me back on Doxy since it seems like I have some infection down there. Yeehah. :bonk:

I know that there is a lot of good information on these boards, and thank you to everyone for that. Do you have any specific links to posts that would be beneficial? There is a lot to sort through.

Thanks again and best of luck to everyone :hi:

[BluesCrew1]

Darty17, just read your lengthy update on my email. Whew! That is more than enough to wear a guy down! Seems like you are getting attention and that the doctor(s) is on the right path - as in you stated some relief, but with recurrence. I feel bad for you!

You need to hang tough! There are new treatments emerging all the time. I went to some bad prostatitus caused (from my point of view) from a TRUS exam of my prostate. This showed up cancer and further evalution on a second opinion showed the cancer spread throughout my prostate - so I ended up having a radical prostatectomy. Enter IC and eventually Pelvic Floor Syndrome. That is, one problem can lead to others, though the do not seem related. Hence, my "hang in there" encouragement. No one knows better than you how you feel. I had to change uros to get a better treatment for IC. If you have cystitus, make sure your Urologist somewhat specializes in its treatment. My old Urologist was great with cancer, however, once he realized (after bladder biopsies) and pain coming and going with antibiotics, he concluded IC. Sent me to an alternate Urologist who more or less specializes in IC and related issues. This was most helpful, but I am still in the hospital 2 to 4 times per year for outpatient work to help keep me feeling better. See my second post (once I put it up today) on the Interstim Device that I am now trying. It, with the right setttings and a good battery, seems to be giving me some significant relief for Pelvic Floor Syndrome and urgent/frequency issues. My point, it is easy to become frustrated and depressed. They are learnng a bit more every day. There is hope! I wish you the best!

[tmog]

hang in there Darty. Why is the uro 250 miles away? Do you live in the jungles of Costa Rica? LOL. J/K

That's a long time on anti-biotics. How have they been working so far?

[Darty17]

I am not entirely sure if it's the Antibiotics that are doing it or just time, but they seem to help. Until recently, when after a month of being on Cipro, it stopped working and I was put on Bactrim instead. That didn't help either.

I live in Western CO and my Uro is in Denver. All the Uro's here are booked out for well over a month!

I have been on antibios off and on for over a year now. Getting old fast.

[starflight]

Born April 8, 1981
Symptoms began after a UTI which went untreated for around 2-3 months. After a course of standard antibiotics the condition seemed to lessen but never entirely leave. My theory is the original UTI caused an autoimmune response which continues to this day and acts just like the UTI although it shouldn't =p

My case is abit weirder though, I went to a urologist, he did a few exams (found blood in urine), his answer was "well my suggestion is avoid acidic foods" since that was basically what I read online he was of no help, ha. Honestly though he probably saved me from going through the hell of being diagnosed when really no treatment is perfect.

Now my symptoms began after my UTI treatment, they include the following:

1. Urinary burning
- This sucks, it sucks, it sucks, the pain is terrible if you don't prepare, infact what sucks more is it really does seem triggered by acidic foods but sometimes it just happens for no reason at all. Someone tell me exactly why the hell urinating would burn? Anyway stupid symptom :(

2. Urgency
- Occasionally under stress my IC acts up, but never terribly bad just annoyingly so.

3. Pain
- Actually my problem is pain mostly, urination pain and such, I don't even understand how it can be painful except perhaps the ammonia in the urine may be an irritant itself?!

I read somewhere that weak kidney chi is the cause of IC, I would tend to agree as whenever I eat something with alot of preservatives like hot pockets and then sleep when I wake up my IC is termendously painful (thus I avoid them). It's interesting eh?

I've got no clue what herbs to try because I know UTI herbal remedies do nothing for IC, I'm trying Saw Palmetto as it's supposedly good for urinary health and the central nervous system. Also I want to make note that Ester-C seems to help alot, the question is really what else can help besides the damn Ester-C lol

I'm also curious why my penis has pain associated with IC, I mean it's really a joke IMO, anyway whatever. I would use a drug but uva ursi tea is supposed to help urinary pain I'm told.

Another important note is mine seems triggered by stress, Zoloft basically made this condition not exist for 3 years. Freakin bizarre!

Strange facts: I can drink coffee no problem, seems to sooth my nerves and lesson IC symptoms?! Alcohol can trigger but not as much as I thought. Why would it anyway the alcohol itself is filtered by the liver and doesn't pass directly into the bladder.

[BluesCrew1]

Starflight, Good or bad, your symptoms are real, they are really painful, and, from what I have learned, sadly, consistent with others who post here on ICN. God be with you as you adapt your life to deal with the issues IC brings on.

Foods can be a terrible trigger! Once you understand what you can and cannot eat without symptoms, you can work to adjust your diet. Steer clear of some things that are supposedly good for your urinary tract. Cranberry juice is one! I find that I can tolerate some of the foods on the "Do Not Ever Eat" portion of the ICN diet posted on this site. Mostly, this list is a good starting point.

I have definitely tied seasonal allergic reactions to increased IC flair ups. My IC is flaired up right now, and I know my allergies are acting up as well. I have allergies all year, but they are extremely bad in spring and in late summer until well after the first frost here in Michigan. My Uro agrees that heightened allergies drive increases in IC issues and pain. I have had 5 hydrodistentions with laser cautery in 2.5 years since I was diagnosed. These have been done in May and in early October - interesting that the treatments seem to coincide with a downturn in allergy season - but again, I suffer allergies 365 days a year to some degree. So, if you have allergies, this can make IC worse, or so it seems. Also, some allergy medicines can cause IC pain. I can no longer take Allegra / Allegra-D, which I used to depend upon on my worst allergy days. This med drives my IC wild!!

Urinary burning is a major issue. I have learned to basically take a deep breath, let it out slowly and while relaxed start my flow and "let it burn". My IC has led me into Pelvic Floor Dysfunction - which is an extremely painful muscle spasm issue all around your perineal area, anus, etc. Feels like you are sitting on a couple of golf balls and cannot move them. I posted in another location on this site that I have now had an electronic "Interstim" unit placed and it does help with the urgency and pelvic pain somewhat. I am still playing with mine and need to go back for alternative programs already. This is a big step, however. But, I have been much better at getting in my daily walks/bicycle rides, which had essentially stopped due to urgency/frequency/pelvic muscle pain.

I wish you much luck in your treatment. I am fortunate to live in an area of the country where there is a urology practice at Beaumont Hospital that focuses on finding effective treatments and diagnosis of IC. I am signed up to participate in the tissue bank/urine sample studies, etc.

Life with IC can be miserable, but you can manage it with the proper care. Even with my implant, the current flair up has me up and going about every 45 minutes today!

My Best To You,

BluesCrew1

[zwr]

I was finally diagnosed in December. since then I have been taking Elmiron hydroxyzine hcl potassium citrate terazocin and cyclobenzaprine. My biggest problem is frequency. i feel like a dog on a short chain, I better not find myself thirty minuets from a bathroom. Things are not great, but they have been worse. three years ago I was a complete mess. My wife was worried as I was in constant pain, and losing weight. My mother was sure I was dying of cancer and was just keeping it from her. when I look at photo's that were taken of me at that time I can see the pain in my face. I believe that I got into that condition from straining. I had urgency and would go but feel as though I still needed to go, and from that I got into the habit of straining to go. It was a vicious cycle. Looking back now it seems dumb. At the time I was confused. I found a physical therapist that was God send in getting that part of my problem straitened out I know now no matter what " NO STRAINING".
My name is Jerry and if I can be of any help just drop me a line. It is good to come here, and know that we are not in this alone.

[BluesCrew1]

ZWR, sounds to me like you have made the route! Sad to hear, but at least you are addressing it. My Uro has very little confidence in Elmiron, so I have not ever tried it. Based on what I read here, Elmiron is a bit of a toss of the dice, but it helps some folks. I am also a heart patient, for 16 years now. As such, antidepressants are not encouraged by my cardiologist at all. I guess they can mess with your heart a bit. However, I take Atarax at bedtime. It has helped a great deal.

The Medtonics sacral nerve stimulator implant works, but you have to find programs that work, that don't aggravate the pelvic floor you are trying to fix. This is expensive, but I needed something. I was going over thirty times per day (less than 30 minutes). I was going so often, that my bladder has actually shrunk or lost elasticity. I now need to go back for some new programs, a trial and error process, but, I can get along for 1 to 2 and sometimes more hours. I still have to be careful of what I eat. Otherwise, the bladder burning is back.

All this is to say, hang in there! I feel, for the first time in over a year, that I am actually managing the IC and it is not managing me. Had I felt this good a year ago, I might not have retired early - - then again, having been able to retire early has allowed me to work on my health, so . . .

Jerry, my name is Ivan, but I go by BluesCrew1 here, to tie into my guitar playing, singing, song writing side. Plus, IC can sure give you the blues!

Take Care,

[acapa]

Diagnosed 2.5 years ago with cystoscopy, 50 yrs old. on Elmiron, prosed, duragesic patches and percocet daily. Perineal pain and pressure, peeing 5 times a night, sex is OK but can cause pain afterwards. In the midst of a flare, not sure what caused it. I sit a lot so need to take the laptop to bed. Having this is Hell on earth.

Curious about instillations and if any men had experience with them.

success with the quercirtin (Spelled wrong) based pills?

Also, any docs in "the OC" who could be recommended. Went to two docs who turned out to be more BS than anything. :cussing:

[arkitekton]

starflight wrote:

"1. Urinary burning
- This sucks, it sucks, it sucks, the pain is terrible if you don't prepare, infact what sucks more is it really does seem triggered by acidic foods but sometimes it just happens for no reason at all. Someone tell me exactly why the hell urinating would burn? Anyway stupid symptom"

Have you tried Azo (Phenazopyridine) for this? I've had good luck with it for the burning pain you mentioned.

Prelief also helps counter the acid in foods.

Another thing I'm trying is to reduce the acid in my urine and therefore the way it irritates and thereby causes pain in my bladder lining. A typical way to do that is by taking Potassium Citrate, which is the method I'm using. I understand some people try a 1/2 teaspoon of baking sode in 4 oz of water to cut the acid in their urine, typically in response to flares.

Best of luck

[acapa]

starflight wrote:

"1. Urinary burning
- This sucks, it sucks, it sucks, the pain is terrible if you don't prepare, infact what sucks more is it really does seem triggered by acidic foods but sometimes it just happens for no reason at all. Someone tell me exactly why the hell urinating would burn? Anyway stupid symptom"

Have you tried Azo (Phenazopyridine) for this? I've had good luck with it for the burning pain you mentioned.

Prelief also helps counter the acid in foods.

Another thing I'm trying is to reduce the acid in my urine and therefore the way it irritates and thereby causes pain in my bladder lining. A typical way to do that is by taking Potassium Citrate, which is the method I'm using. I understand some people try a 1/2 teaspoon of baking sode in 4 oz of water to cut the acid in their urine, typically in response to flares.

Best of luck
Do you need a script from the doc for AZO or Potassium Citrate? I have not tried before but am willing to try ANYTHING at this point. Pain is getting bad.

[zwr]

I get Potassium Citrate by prescription not sure about AZO. I have never tried that.

[acapa]

Does anyone have a Doc in Southern cailfornia (OC?) who has experience with men who have IC. The couple of Uro's i have gone to consider me more of a curiosity (it seems) than a patient. I have had IC for 2.5 years and it has been hell. Nobody understands what you go through, you suffer alone with this stuff.

Any men with any pain relief when it comers to instillations???

[some_guy]

Does anyone have a Doc in Southern cailfornia (OC?) who has experience with men who have IC. The couple of Uro's i have gone to consider me more of a curiosity (it seems) than a patient. I have had IC for 2.5 years and it has been hell. Nobody understands what you go through, you suffer alone with this stuff.

Any men with any pain relief when it comers to instillations???


Hey acapa,

I know the feeling about URO looking at you as a curiosity. My first one was a real jerk, it was as if I did something very wrong that caused my IC and he would reluctantly help me. The second one was as cold as can be, acted like it was some big mystery that cysto/hydro made me worse then told me only treatment was Elmiron and that would have to work. My last URO "IC Specialist" eyes glazed over on second visit when I had no improvement and proceeded to get rid of my problem case and send me to another "IC Specialist". So you are not alone with the experience of bad Urologists, not sure they are bad but rather have a small bag of tricks and when they don't work it becomes a problem for them.

I don't know anything about instills, I have read several female patients on here who seem to be helped by them. Pain is my biggest problem the combination of percocet and pyridium helps a great deal for me, it is not perfect pain control but I can function at least.

[acapa]

I have taken prosed, lyrica and tons of antibiotics. I am currently taking Elmiron. I just tried the pyridium last week and broke out in hives. Sad thing is, it helped the pain. $%@#$

[some_guy]

I just tried the pyridium last week and broke out in hives. Sad thing is, it helped the pain. $%@#$

Oh that is a shame, pyridium does seem to help the pain but ask your doctor about trying Urelle instead. I may be wrong but I think the doc said they were similar type meds.

[chocl8guy]

hey guys,
I have found that taking anti-inflamms when I'm in a flare helps quite a bit. I take Arthrotec. It eases the pain and discomfort. As for a doctor, they really have very few treatment options available. Would you consider flying to NY for a consult with Dr. Moldwin?
Good to hear another guy's story. we are a rare breed here.

[acapa]

Oh that is a shame, pyridium does seem to help the pain but ask your doctor about trying Urelle instead. I may be wrong but I think the doc said they were similar type meds.
Thanks for the heads up, I am wondering if these have any sulfa in them, I am fiercely allergic to anything sulfa. I will check out the Urelle.

[starflight]

Well men I'm still here and still burning, I'm planning to try Cystex soon, infact I'm using Aloe Vera now but have noticed little effect (although herbs are said to take awhile to have effect). I do have a plan though in place to try, in my opinion my IC is either bacterial or immune based, I'm going to try Serrapeptase, Inflameze and a more potent probiotic like Bio-Kult. We'll see if that works but only when I know Aloe Vera, Trader Joes Very Green and MSM fail. This is my plan of attack, I suspect the latter will be what I end up doing, also I may try Querictin and something like Zyrtec.

[Mitchel Jolitz]

i was seen by a doctor who worked with me over a period of 3 years and was diagnosed with IC after multiple cystoscopy and pain clinics, We found that a combination of Baclofen 20mg three times a day along with phenazopyridine HCL 100 mg three times a day (taken at the same time) was the best treatment to make the pain endurable---also makes sex better.....if you haven't tried this yet --- ask you doctor about it ---it may give you some relief---hope this helps

[BluesCrew1]

Hi folks, I have been away from regular posting on ICN for at least a couple of years. I still cope with IC. I generally have to urinate 20 x per day +\-. I have been involved with a clinical trial at William Beaumont Hospital in Royal Oak, MI since September 2012. I have my last cystoscope associated with this study coming up on Friday. Drs. Peters and Gylleran have been running the study. I am a patient of Dr. Peters. The study is to determine if instilling lysosomes into the bladder would create an effective barrier against acids and also to help heal ulcers in the bladder. I take Atarax, 3 tabs at bedtime, as the only regular medication just for IC. At this point, my bladder has shrunk so that the volume is so low that that alone drives me to the men's room regularly. My symptoms are worse in the afternoon and evenings. Anyway, that is my current status.

[ICNDonna]

BluesCrew1: Thank you for participating in a clinical trial. If people weren't willing to do this, we would not have any new treatments --- ever. I have signed on for a trial, but it was cancelled before I started, but I'd be willing to do one. Be sure to let us know what your cysto shows.

Donna