Men...What is currently working for you? What hasn't worked for you.

[Alex1981]

I've been dealing with my IC for 3 1/2 years now. I am a 28 year old male and have decided to treat my IC with supplements and a modified diet. I saw an Allergist about 2 years ago and discovered I had a pretty severe allergy to corn. I had been doing pretty well, but have noticed a recent increase in my urgency. My pain has always been very mild and continues to be. I was just wondering what is working for people and what you guys have tried that hasn't worked. Below is a list of different things I have tried.

Early Diagnosis-era

Elmiron - Did not work for me. Side effects included loss of hair
Elavil - Helped with urgency, but made me a zombie. I was tired 24/7
Ditropan XL - Seemed to work for a short time

Experimental-era

CystaQ - Did not work at all, urgency increased big time
Mushroom Root - Noticed no change
Whole Leaf Aloe Vera - Noticed no change
L-Arginine - Noticed increased erection, but no decrease in urgency

Currently taking

Barlean's Omega Man
Chuck's Glucosamine/Chondroitin/MSM
Chuck's Quercetin Complex
Gaia Herbs Saw Palmetto

[Cadyfatcat]

I have had IC for years now; I have tried all conventional and non conventional therapies and supplements. I mean everything from elmiron to quercitin to aloe vera to yoga and relaxation to Low Dose Naltrexone to Cytotec to L-arginine.

While Elmiron, antihistamine, and low dose antidepressant were helping a little, the addition of Uracyst to my treatment regimen has been a night and day difference. With this treatment I can see the light at the end of the tunnel which is full abatement of symptoms.

Read my other recent posts for more detail.

Only bad news is that if you are in the U.S. Uracyst is currently not yet approved here, it is in phase III trials. I live in New York and am close enough to Canada that I drive up there and get it.

let me know if you have any more questions

Alex

[Alex1981]

Anyone else care to share?

[shaun10]

I am on a bunch of things now. Elmiron, 400 mg a day. elavil 25mg a day, hydroxyzine 25 mg a day and cystoprotek for about 2 weeks now. Ive noticed a decrease in pain but definitley not in frequency yet. been on elmiron for 6 months and the rest of the stuff little by little there after. doc says elmiron can take 2 years to work. he also gave me urelle but that doesnt make much ense to me when i read about what it does. so hopefully with some combo of these meds i get better. one thing i have noticed is i am able to veer off diet just a bit with no flare (yet)

[bob04951]

What did not work...Elmiron, instills, alchohol in any form, and all of the no-nos on the diet list.

What does work (to an extent, no day is 100% free of problems)...fentanyl patches, oxycodone, xanax just during a really bad flare and in the PM only, hydroxyzine (got some relief pretty quickly), pyridium only when that burning flares up, Cymbalta and other things for other problems not related to IC.

PT probably would have helped if Bob followed through, but he was just so hurting at the time, he only did 4 visits. But he has the basic exercises, just can't even focus enough to do them. His PT was wonderful and extremely knowledgeable and found his trigger points externally (interior hip bones, way deep).

Marshmallow root tea really seems to soothe him, he drinks a pot a day. Don't know if it's just the warmth, or mind over matter, or if it truly DOES something, but it helps. Avoiding bad foods, he is particularly sensitive to nitrates, nitrites and preservatives.

Now, have a question back at you guys. How many of you have penile pain? That seems to be where his worst pain is. He says some days he wants to yank it off. Next doc appt will speak with our NP about prudendal nerve issues. He's had 2 abdominal surgeries, and lots of scar tissue, so seems logical. And physical activity makes it worse. Just curious if all of you guys have the penile issue, or just some of you. Thanks for any responses, would appreciate your input, and what do YOU do for that. Heating pad does help somewhat. Jill, wife of Bob

[sshannon74074]

Bob's wife,

No penile pain other than a sharp shooting pain once in a blue moon but doesn't last but a second. I do get some pain that radiates down to my left foot when I'm having bad bladder pain. All of my pain is in the front, smack dab in the middle of my bladder. I recently tried some percoset and it has helped. I've tried just about everything from antibiotics to herbs to pelvic floor exercises..you name it and I've probably tried it. Lots of water, NO COFFEE OR TOBACCO, the right foods, plenty of exercise, and decreasing stress level works best for me. Recently I went on vacation for a week in Mexico and had an amazing time which was very strange and has got me in a quandary.

[1982]

I have no bladder pain all penile the dr's can't tell if I have ic or prostititis

[1982]

Does everyone else have bladder pain. My cysto showed what the doc called mild vascular irritation.

[JL1961]

I have had IC for years now; I have tried all conventional and non conventional therapies and supplements. I mean everything from elmiron to quercitin to aloe vera to yoga and relaxation to Low Dose Naltrexone to Cytotec to L-arginine.

While Elmiron, antihistamine, and low dose antidepressant were helping a little, the addition of Uracyst to my treatment regimen has been a night and day difference. With this treatment I can see the light at the end of the tunnel which is full abatement of symptoms.

Read my other recent posts for more detail.

Only bad news is that if you are in the U.S. Uracyst is currently not yet approved here, it is in phase III trials. I live in New York and am close enough to Canada that I drive up there and get it.

let me know if you have any more questions

Alex
HOW DO YOU MIX THE Uracyst INSTILLATION , OR JUST USE 20ML ?

[bj42]

I am a 63 year old male. I was diagnosed with IC 2 1/2 yrs ago. I had a laser procedure for BPH and the Uro diagnosed IC during that procedure. The BPH procedure solved my frequency issue during the day, but my nocturia continues to be a problem (5x per nite).

I have been taking elmiron for 2 years with no apparent help. I have followed the IC diet. Other diagnoses:

Fibromyalgia
IBS
Colon ulcers
Peripheral neuropathy
Restless leg syndrome
Low thyroid (following removal of most one thyroid due to a benign nodule)
Iron deficiency anemia
Arthritis
GERD
Sleep apnea

Other meds:

Lortab
Cymbalta
Flomax
Finasteride
Tramadol
Neurontin
Restoril (replaced Ambien)
Desmopressin
Dexilant
Iron and thyroid meds
******

I had 4 kidney stones 8-10 years ago and the doc told me my kidneys have trouble processing protein properly, causing the stones. He suggested a low meat diet. I did not follow his advice, but recently have followed a vegetarian diet (for the last few weeks). I am wondering if my nocturia could be a kidney issue, rather than a bladder or prostate issue. But blood tests show normal kidney functioning. My creatinine level has been a bit high a few times, but my docs dismiss this as unimportant.

My docs say that it is very important to solve the sleep deprivation issue - my average uninterrupted sleep period is 1 1/2 hours, so I have fatigue and brain fog from a lack of deep sleep.

I'm sure my Uro would love to do another laser procedure for BPH (he's know as a "procedure happy" guy). And he has offered instillations as an option for IC. I don't know which to pursue first. I may get another cystoscope to see if the IC or BPH appears to be a bigger issue.

I do not have penile pain, but have ED and recently have trouble reaching orgasm and, when I do, the intensity is greatly reduced. I don't know is this is a uro or med side affect issue.

Any advice, especially on the nocuturia?

[Dean76]

I am a male and have had IC for 15 years. I am now 34. I was first disgnosed like most men with prostititis and took a slew of antibiotics (which probabably made things worse). I have taken all the drugs most common for IC... elmiron, elavil, cymbalta, hydroxyzine, dmso instills, and many more. I was doing awesome with Lortab but it I was getting to much of a tolerance and was having to take more and more and getting very dependent. Lortab was changing my personality and making me somewhat biopolar ... up and down.... fustrated...and very forgetful. I was doing well with ambien but starting getting up at night and argueing with my wife or e-mailing my customers and not even remembering that I had even done those things or remembered anyrthing I said. I am currently taking about 1500 mg of neurotin a day with 1 hydroxyzine at night and doing ok. I would like to try cymablta again or wellbutrin to see if I could get relief without taking narcotics. I fill my pain is all nerve related...not so much damaged bladder lining. For soome reason my pelvic, prostate, bladder area nerves are hypersensitive. Sex, alcohol, caffeine all aggravate my symptoms. No foods or supplements aggravate my sitiaution. Bladder frequency as gotten 10x better but not really sure why. I think the Lortab, tramadol, neurotin has kept the inflamation down or maybe my bladder has gotten better over the years. I use to go to the bathroom evry 30 minutes to an hour but now I can go hours. Zoloft did help with the hypersensitivity for a few years but started actually making me very depressed and not caring about anything. I was so excited when I first started zoloft. I started it with Loratb several years ago and thaught I was cured. I took half of a tablet of zoloft in morning and other half at night with 1 lortab at night and was doing awesome. Then I needed 1 lortab in morning to feel mentally normal and keep pain down ... then needing lortab more and more throughout the day to feel normal. I was getting pysically and psychological dependent. If I ran out of lortab i would be in very bad pain and feel very depressed and unhappy:kiss:. Lortab stilll works best for pain and was giving me a better quality of life....i was so happy at the beginning... but doesnt unfortunatley it does not work like that forever. I think I may have depleted all my dopamine and seratonin firstly from pain, secondly for no sleep because of pain, and the narcotics wiped the rest of my neurottramsmitters out. I did that combo for a year or so before realizing I was having a problem., I told my doc which scared him so he is reluctat to give me anymore Lortab. I guess I shot myself in the foot for ng to honest but I am that type of person. If all fails with other therapys and i have to get back on the narcotics I will just have to go to a pain clinic. Maybe a longer lasting oxycodone would be the answer???? so I wouldnt have the highs and lows all day.
I went thru a slew of natural therapys as well. The intestinal supplements with slippery elm, marshmellow root, curcumin, etc which really helped along with probiotics, and fish oils. I should probally get back on those but its so easy to reach for the RX drugs when they work so fast. When your in dire need for pain relief the natutal supplements are not going to get you out of pain when you need immdeiate releif. I would have to say like most ... elavil helped with pain but made me a zombie. It was taking my life away. I would sleep all the time and the pain seems to come back worse after it wore off. I too like most would crave sweets and would eat chocolate muffins and drink mountain dew every morning. I was always so tired ...i hated it.
I did try savella but didnt give it enough time. It made me very nasueas. I was trying to get off lortab so was withdrawaling at the same time. I did pelvic floor electrical stimulation for about 2 months but did not help. I wish somehow someone could just give me a shot in the pelvic floor muslces to numb everything for a day or so and i think that would work. I am very afraid of Interstim and will be last resort. From what I have read Interstim is not for pain but soe say it helps. I mostly have pain but the pain causes the urgency and frequency. Im finished ranting. Maybe some more people will post to continue this thread. I hae a ton I cold talk about but nuerotin has slowed my brain down at the moment... but very little pain today!!!!

[JRye]

Age 49.

I Have had chronic prostate pain on and off for lots of years. I have a sitting job and I have done a ton of long-distance miles biking over a number of years so I 1/2 jokingly attribute it to that. I took Flomax and then later Uroxatral for several years and it did seem to help it into remission for some time spells..to me I had chronic non-bacterial prostatitis.

Several years ago my URO, at that time suspected I had IC, so he did a scope and found no evidence of it.

2 years ago I then started getting abdomen pain and bloating (thought it was digestion related so my internal medicine doc written an order for a CT scan and colonooscopy - which proved to be negative). The GI doc said go see a Urologist (tried a different one this time) and he suspected IC and started me on Elmiron (6x day), soon after he did a scope and said he confirmed IC.

I have had some bad long flares on and off and never a time I felt normal . I have no effective flare buster. Worst flares seem to be entire last 2 summers and whether correct or not I partly attribute that to seasonal allergies I have (pollen/ragweed).

Symptoms vary but could be bladder pain, frequency, or prostate pain. URO doc thinks IC has been causing prostate pain however I don't quite believe this and I suspect the prostate issues aggravate the bladder (I would hate to think that I have 2 problems!). Some times have been miserable where you just hope you could sleep to escape the pain.

As far as meds I have tried (for IC);
- Elmiron 6X day << Don't think its helping but afraid to stop
- Hydroxyzine << Seems to help at night with sleeping and reducing my allergies, I only get up on average 2 to times at night normally now (more with flares)

- Note: I just requested that I get a prescription for Amitriptyline although doc didn't recommend this since I was on Hydroxyzine. He said he would be willing to give Amitriptyline a try as long as I didn't take Hydroxyzineat the same time. I haven't taken Amitriptyline yet since have some fear of the side effects but out of desperation I wanted to try something else since the URO doc said next step may just be Intersim (which I would not do) and Physical Therapy (which I have low faith in also).

Non-Drug things I have tried:
- IC Diet << Have followed this exactly for the most part. I don't know how much it's helping but I'm afraid to stop.
- Quercetin: was already taking this before I was diagnosed with IC. Not sure if helping but afraid to stop.
- Saw Palmetto: was already taking this before I was diagnosed with IC. Not sure if helping but afraid to stop.
- Glucosamine/Chondroitin: Not sure if helping or not but it does help my knees it seems! Again...afraid to stop.

Out of desperation and reading forums I started the following last week recently trying to bust the long flare I'm in.....
- Marshmallow root (3 tea bags a day). << have not really noted improvement but will continue.
- Desert Harvest Aloe Vera: took 2 pills one day and had more pain at night so stopped taking it. Contemplating trying again.
- Fish oil pills << not sure if helping or not.
- GLUTEN-free << Experimented for a week with *mostly* sticking with a no-wheat/minimal gluten diet but didn't note a huge difference. May need to experiment with it more.
- MILK-free << tried rice milk as substitute for several days and no noticeable difference
- CORN-free << May try this soon.

...obviously theme is explore whether may be food allergy related but I have some doubts.

Sorry for long-winded reply but that's my protocol so far that has not proved to be silver bullet so the pain continues.

[Mothergoose]

I would not be afraid to try the Amitriptyline for most people it just makes them tired and sleep better. Just start at a low does and build up over time.

I am not too sure why your dr. is afraid to let you take both hydroxizine and amitriptyline togehter. They are not simular drugs other than they both can mkae you sleepy.

You can always stop the amitripltyline if it dosen't help you.

MG

[arkitekton]

I'm a 54 year old male.

What's worked well: Elmiron; Doxazosin class drugs; Paradoxical Relaxation (as laid out in the book A Headache in the Pelvis); oxycodone; careful elimination diet.

What hasn't worked well: everything else. That's only a small exaggeration. I've tried another thirty drugs with either no positive results, or small benefits that were cancelled out by the side effects.

I started out in 2006 with the worst symptoms: chronic pain; chronic, powerful, painful urge to urinate; burning bladder. I stuck with Elmiron for a year and between it and getting rid of foods that cause painful flareups only occasionally do I have to deal with the chronic pain in my bladder lining that plagued me through 2009.

Doxazosin Mesylate 4mg/day helped me get past the worst of my inability to urinate despite the urgent need to do so. This is still at times very unpleasant, and limits my travel and outings, but at least when I'm at home I can usually go within a minute or two.

Paradoxical Relaxation is a form of deep meditation I can highly recommend. It has helped me learn to fall asleep even in the presence of significant pain. Learning to relax my muscles has made my constipation tolerable.

Unfortunately, I've had little success dealing with the pressure that comes with so often feeling the need to urinate, such pressure that turns to pain fairly quickly, and is often located in a golf ball sized area just beneath the skin of my perineum. If I'm out for more than a few hours and unable to use a toilet, that pain can become nearly unbearable. That's the pain that can wake me up half a dozen times during a bad night.

If anyone has any suggestions about the latter, I'd be glad to hear them.

[arkitekton]

You wrote,

"The BPH procedure solved my frequency issue during the day, but my nocturia continues to be a problem (5x per nite)."

Can you tell me how, if the BPH procedure solved your frequency issue during the day, you'd still be waking up a lot at night?

The better I've gotten at relaxing during the day and thereby reducing my frequency during the day, the less I wake up during the night. I'm wondering if I'm missing something...

[bj42]

Yes the symptoms were odd. Turned out that prostate procedure really helped the BPH. And elmiron really helped the IC. And replacement enzymes for my pancreas malabsorption issue really helped with my nocturia. None of my docs understand the latter. But I'm happy

[arkitekton]

Thanks for the reply. Glad you're improving!

[Duzty]

I was diagnosed with IC 9 years ago and have tried the rainbow of treatment. Elmiron, amitryptiline, you name it I have been on it, went for a year of physical therapy where they insert a suppository like device in your anus that sends of shockwaves, sorry but cannot remember what it was called, distillment, but the biggest mistake I was talked into was having an interstim unit installed.
It is a miracle for some, but has been a nightmare for me as I was misinformed about it. I was told it would help with pain and urgency, I was never told about the nightmare that I would have to endure. About a year after the trial and permanent install, I started expericing shooting electric like pain in my scrotum, pelvic area and down my right leg sometimes so disabling that I could not walk. I went to the emergency room and there was no help available to me as no emergency room is equipped to check the device and of course after that you get treated like a drug seeker. My uro suddenly dropped all her patients and moved to parts unknown and I have had a nightmare trying to get another uro to touch me since they don't want the responsiblity of dealing with the mess another doc creates.
I have tried a nutritionist, strict ic diet, and have by the grace of god found a neurosurgeon who has agreed to remove the device from my body but has told me that I have much irreversable nerve damage due to the malfunctioning of this device.
What works for me is warm soaks, massage, and a good pain medication combination. I am currently on Opana which is not as strong as Oxycontin, as I worry about drug tolerance. I mean one has to think about things such as if you get into an accident or god forbid something happens to you and it is impossible for the docs to get you out of pain because you have built up a tolerance but 2 Opana 40 mg and 2 percocet for breakthrough pain makes my life a little easier to live.
Due to IC I have lost alot, I had a promising career as a criminal defense attorney and all that ended with this crippling disease and the aftermath of the interstem unit, but on the upside, I do have some good days now and reasons to smile, so about 45 percent of it is attitude and the rest is finding a good understanding physician that is well versed in IC and does not mind giving you pain relief....

[Duzty]

I was also diagnosed with Chronic Prostastitis and that flares up from time to time but the uro I saw told me that she believes that alot of the swelling and trauma that I had initially at my diagnosis alot of times goes hand in hand with childhood sexual abuse as I was abused from age 5-9.

[Rope_Wrench]

Hi Duzty,
Man, you have my sympathy. If you ever need another guy to vent to, feel free to send me a message. Hearing the story you have makes me thankful my problems are only as far as they are. Things could always be so much worse.
Hang in the buddy, you may have things rough but you are not alone. I may be new to the world of IC but his is the world we both live in now.
Good luck

[eight8ball]

had SAME thing--urologists not figure it out
Neurologist diagnosed in heart beat--pudendal neuralgia--pelvic floor muscles impinging onpudendal nerve and of cours causes sharp pain--mine was chronic
Neurologist gave botox injections in psoas, obturator,etc pelvic muscles--stopped impingment and pain. Need inj about 3 x a year--but it works google pudedal nerve botox or similiar
----
Did not help my severe IC--have not found nswer there--BUT I AM OUT OF PAIN--so I go to bathroom 35+ a day, so what--no pain. good luck check google for botox IC--new research going on
god luck

[Duzty]

Thanks so much for the compassion man. You might be new to IC but IC is IC wether its new or old. Just be careful who you trust, double check every thing and take no doctors word for it just research it yourself...My advice of the day..God be with you.

[Duzty]

Thanks eightball will check into that.

[eight8ball]

Pain often caused by trauma to pudendal nerve when a cysto is done too hard, or catheter removed improperly--commonly occurs and causes pudendal pain--chronic-- but not publicized--it is called Iatrogenic --google that with detrusor or bladder


Thanks eightball will check into that.

[arkitekton]

I was diagnosed with IC 9 years ago and have tried the rainbow of treatment. Elmiron, amitryptiline, you name it I have been on it, went for a year of physical therapy where they insert a suppository like device in your anus that sends of shockwaves, sorry but cannot remember what it was called, distillment, but the biggest mistake I was talked into was having an interstim unit installed.
It is a miracle for some, but has been a nightmare for me as I was misinformed about it. I was told it would help with pain and urgency, I was never told about the nightmare that I would have to endure. About a year after the trial and permanent install, I started expericing shooting electric like pain in my scrotum, pelvic area and down my right leg sometimes so disabling that I could not walk. I went to the emergency room and there was no help available to me as no emergency room is equipped to check the device and of course after that you get treated like a drug seeker. My uro suddenly dropped all her patients and moved to parts unknown and I have had a nightmare trying to get another uro to touch me since they don't want the responsiblity of dealing with the mess another doc creates.
I have tried a nutritionist, strict ic diet, and have by the grace of god found a neurosurgeon who has agreed to remove the device from my body but has told me that I have much irreversable nerve damage due to the malfunctioning of this device.
What works for me is warm soaks, massage, and a good pain medication combination. I am currently on Opana which is not as strong as Oxycontin, as I worry about drug tolerance. I mean one has to think about things such as if you get into an accident or god forbid something happens to you and it is impossible for the docs to get you out of pain because you have built up a tolerance but 2 Opana 40 mg and 2 percocet for breakthrough pain makes my life a little easier to live.
Due to IC I have lost alot, I had a promising career as a criminal defense attorney and all that ended with this crippling disease and the aftermath of the interstem unit, but on the upside, I do have some good days now and reasons to smile, so about 45 percent of it is attitude and the rest is finding a good understanding physician that is well versed in IC and does not mind giving you pain relief....

I'm truly sorry for your suffering, Duzty. I know in many ways suits are no help at all, but your story smells of physician malpractice. You mentioned familiarity with criminal defense so I assume you know the ropes here. Have you given thought to having legal help with this?

It's crazy that a doc wanders off without leaving you a way out.

[bobspez]

Male- 65 yrs. old.

Symptoms:

Day time frequency most of my adult life (10 to 20 voids during the day). Doesn't bother me, I'm so used to it I hardly notice it.

Extreme nocturia the last few years (3 to 25 voids at night,
average is 10 to 12 per night). More than 10 voids wrecks my sleep.

During night time flares, I get continuous pronounced bladder vibrations (my wife can feel them if I am next to her). Not painful at all, just odd sensation like bladder full of butterflies trying to get out.

I also have BPH, but after a prostate procedure last year, the nocturia didn't improve, I just passed more urine faster.
.............

What helps:

During a flare, a microwaveable moist heat heating pad placed on my bladder seems to quiet it down, reduce the frequency and helps me get to sleep a few hours.

.........

What I have tried but discarded:

Xanax at night. After just a dozen times, found I couldn't sleep without the xanax, even if I was having a good night,
so I quit.

Ditropan. Lowered my BP to under 100/50. Felt like I had a mouth full of cotton. Loss of taste and extreme thirst were worse than the nocturia, and my blood pressure couldn't go any lower, so I quit.

Wearing Adult Diapers to Bed. Because my nocturia averages about 100 ml. of urine per void, I quickly filled up the super absorbent adult diapers in a couple of hours. The absorbent material hardened and it woke me up. Not worth the effort.
.................
What seemed to work but didn't last or was inconsistent:

Reducing alcohol, reducing morning caffeine, change of diet had no lasting effect. It seems my body just has good (less than 5 voids) and bad nights (more than 10 voids). I can eat and drink anything and have a good night, or observe the IC foods list and have a bad one.
The only foods that I now avoid, as they do seem to create a flare, are citrus, Chinese, Mexican, peppery hot and spicy foods, grated cheese, spinach, and chocolate.

Pelvic floor exercises, meditation, relaxation, exercise had no consistent effect.

Supplements, herbal teas, vitamins, pumpkin seeds, etc., had no lasting effect.


Presently trying:

I am presently trying something called Inclined Bed Therapy (IBT). I placed wooden slabs under the casters at the head of my bed frame which raises my entire box spring and mattress (not just the top half) about 6 to 7 inches higher at the head than the foot. This is supposed to improve circulation and waste elimination, reduce nocturia, and improve the quality of sleep.

For the first two weeks, the results were very promising, with my nocturia cut from an average of 12 to just 6 voids per night. My wife and I seemed to wake more refreshed as well. But for the last week or so the nocturia gains have declined almost back to the pre-IBT level. I will continue to give it a fair trial to see if the nocuria changes in any substantial way over a several month period.

I have also decided to try giving up alcohol altogether (I am already down to just 2 or 3 drinks a day) for a couple of months as well and just drink about 1-1/2 liters of water per day as my only drink. If this doesn't help either it will at least let me drink with a clear conscience. :)

Bob

[arkitekton]

Wish I had something useful to say, but wanted to mention that Inclined Bed Therapy sounds interesting. I'll give it a try. Also have a question for you. You wrote:

"Male- 65 yrs. old.

Symptoms:

Day time frequency most of my adult life (10 to 20 voids during the day). Doesn't bother me, I'm so used to it I hardly notice it.

Extreme nocturia the last few years (3 to 25 voids at night,
average is 10 to 12 per night). More than 10 voids wrecks my sleep."

How on earth are you able to function acceptably (I'm inferring that from your post) despite waking 7, 8, 9 times a night? I'm down to waking only four times a night on average. Any more than that and my daytime life suffers significantly. At 7, 8, 9 times I night I'd be on the verge of being unable to function at all. When I was up to 12-15 times a night I couldn't function and after two weeks of that was entirely ready to check in to a hospital.

Is there something you do that lets you manage despite constant interruptions--waking 7-9 times a night implies you're getting no REM sleep at all.

Best of luck, and thanks for posting and any advice you'd care to give.

ark

[Mothergoose]

I hope this helps you I have had my bed this way for years, I don't think it helped me at all. But who knows what i might be if my bed wasn't raised.

I keep threatening to take the supports out, as our top mattress slides down off the box spring and every few days I have to push it back up again or I loose our pillows between the bed and the headboard.

I think sometimes finding what helps and what doesn't is hard, you try a bunch of things, you name it. My experience besides the diet I can't really say for sure what has helped and what hasn't helped, I figure slowly over time, some of the things I've tried must help. I am better now than I was for years, I still have lots of room for more improvement, but I at least have periods of some good time now, where before for years I had no good days, and saw no light at the end of the tunnel.

I think everything that sounds reasonable to you, balancing the pros and cons, possible benefits verses, negatives. Side effects verses feeling better, or a relief of a symptom. They are worth a try, everyone is different from what their symptoms are, which symptoms are most bothersome to them, what other medical conditions they have. that the treatment has to be just as varied.

It sure would be nice if IC was a cookie cutter disease and if your cut out is this you do this and it works, but only in a perfect world I guess.

MG

[bobspez]

Hi Ark,

Thanks for your reply. I'll be glad to answer your questions.

A few years ago I started to pee in a 4 liter plastic jug with a handle and a wide mouth screw top that I keep in a metal tray on the floor by my bed. This allows me to wake up (but not open any lights or walk to the bathroom) pick up the jug by the handle with my right hand, unscrew the wide mouth cap and put it on the bed with my left hand, pee in the jug, screw the cap on, put the jug down in the tray by the floor and get back into bed in about a minute. I keep my mind blank, don't think of anything, and am usually back to sleep in minutes. If this happens once an hour or so, I never really wake up completely, and get right back to sleep. I do dream, so I think that means I do get REM sleep. And I do feel well rested after 7 or 8 hours of sleep like that. That's why I can say getting up 5 or 6 times is a good night for me. In the morning I empty the jug in the bowl, then rinse out and disinfect it and cap in the bath tub.

If I start to pee 2 to 5 times an hour, I wake up until the frequency goes back down to once an hour or more, and the next day I feel like a complete zombie. That's what I call a bad night. In my case that only happens one or two nights in a row, then I get some good nights. If that was happening regularly more than 3 nights in a row I'd have to go to bed with a foley catheter and 2 liter leg bag, or try some heavy duty tranquilizers or anti-depressants to knock me out.

Trying to find a solution for the bad nights is what drove me to try the super absorbent adult diapers, but the diaper would only give me about two hours of sleep. I could pee in the diaper and sleep, but after 2 hours the absorbent filling would start to harden like plaster and it would wake me up. Then I'd have to remove the diaper, and feel like I needed a shower, so it wasn't a good solution.

When I decided to try the inclined bed about 2 months ago, I started keeping track of how much I peed at night. I kept a pee diary for 16 days before raising my bed. I had thought I was going much less than I actually was. I was forgetting how many times I got up by the morning.

To keep a diary, I kept a pad and pencil on the night stand and made an x in the dark on the pad before picking up my jug. In the morning when I counted the x's I found I was going an average of 12 times a night, ranging from 3 to 25 times during the 16 days before I raised the bed.

In the morning I also used a ruler graded in millimeters to measure the height of the urine in the jug, having determined that 66 mm. high was one liter, and calculating the volume with a calculator by dividing the height in mm by 66 to get the volume in liters.

I was averaging 1.2 liters a night, and nightly volumes ranged from .4 liters to 2.75 liters. I put everything on a spreadsheet and calculated I was voiding 100 ml. per void, so my bladder wasn't backing up.

Recently I had a UTI. Before my prostate procedure last year I had complete urinary retention of 1400 ml (that's what went into the catheter bag in the ER) and so I learned to catheterize myself and bought sterile catheters with bags online to avoid having to go to an ER again for retention.

During the recent UTI I had to catheterize myself once and found I only had 150 ml. retained in my bladder. So I'm passing a large volume most nights, and not retaining urine in my bladder, which is way better than not peeing at all!

My main concern for the past 6 months or so is to find a way to deal with the bad nights when a flare is causing me to go several times an hour. Often I will wake after an hour of sleep and then start going every 10 or 15 minutes. If it only lasts a couple of hours, I at least can get a few hours of sleep. If it goes on the rest of the night I am a zombie the next day, having only gotten an hour or so of sleep.

The jury is still out on the inclined bed, as it is not working as well as it first did. I will give it a couple of months before making a final judgment.

What I have started to do is after an hour of being awake and having gone several times an hour, I will get up and microwave the wet heating pad to place it on my bladder. A few times I was successful in stopping the flare in another hour or so by drinking 3 to 4 ounces of vodka with 4 or 5 ounces pear juice. That would run right through my bladder in a half hour or so, and then my bladder would relax and I would fall to sleep.

The longer I stay awake with a flare the less chance there is of getting back to sleep at all. Once I pass two hours, it will probably last till daylight. Another thing I noticed, is that sleeping on my back with or without the heating pad seems to lower the frequency compared to my normal practice of turning back and forth from my right to left side.

Also, sometimes sleeping on my right side seems to cause me to get up needing to pee badly, but I am blocked and can't pee until I lie on my back or left side, or walk around for a few minutes. That is quite freaky, and usually wakes me up completely.

Sorry to be so long winded. If you have any more questions I'd be glad to answer them.

Bob

Wish I had something useful to say, but wanted to mention that Inclined Bed Therapy sounds interesting. I'll give it a try. Also have a question for you. You wrote:

"Male- 65 yrs. old.

Symptoms:

Day time frequency most of my adult life (10 to 20 voids during the day). Doesn't bother me, I'm so used to it I hardly notice it.

Extreme nocturia the last few years (3 to 25 voids at night,
average is 10 to 12 per night). More than 10 voids wrecks my sleep."

How on earth are you able to function acceptably (I'm inferring that from your post) despite waking 7, 8, 9 times a night? I'm down to waking only four times a night on average. Any more than that and my daytime life suffers significantly. At 7, 8, 9 times I night I'd be on the verge of being unable to function at all. When I was up to 12-15 times a night I couldn't function and after two weeks of that was entirely ready to check in to a hospital.

Is there something you do that lets you manage despite constant interruptions--waking 7-9 times a night implies you're getting no REM sleep at all.

Best of luck, and thanks for posting and any advice you'd care to give.

ark

[bobspez]

Hi MG,

I am hoping the inclined bed will help, but fear it won't. Still I will give it a fair trial of a few more months. Our bed has a headboard, sideboard and foot board, and there is no gap between mattress and the headboard and footboard. To raise the bed I put a snap together metal frame over the existing built in frame, and put boards under the top casters of the new frame, so only the box spring and mattress is raised. The headboard, footboard and sideboards are still in their original positions. The mattress fits tightly between the head board and footboard.

I agree with everything you said about trial and error. And everyone is different, which is why there is no "cure".

But half a loaf is way better than none. I've read a number of people say their condition has improved over the years. I'm glad yours has. I think it gives us all hope.

I think it may be the result of the body healing, but also of our learning things that cause incremental gains, and in total, winds up improving our condition to the point we can live with it.

On the rare days I only get up one or two times in the night, I wake up feeling like a million dollars. But on nights when I get up once an hour (5 to 7 times) and go right back to sleep, I also feel pretty good. I can live with that. If I get to the point of nearly eliminating the flares that keep me up most of the night, that will be fine with me.

Bob


I hope this helps you I have had my bed this way for years, I don't think it helped me at all. But who knows what i might be if my bed wasn't raised.

I keep threatening to take the supports out, as our top mattress slides down off the box spring and every few days I have to push it back up again or I loose our pillows between the bed and the headboard.

I think sometimes finding what helps and what doesn't is hard, you try a bunch of things, you name it. My experience besides the diet I can't really say for sure what has helped and what hasn't helped, I figure slowly over time, some of the things I've tried must help. I am better now than I was for years, I still have lots of room for more improvement, but I at least have periods of some good time now, where before for years I had no good days, and saw no light at the end of the tunnel.

I think everything that sounds reasonable to you, balancing the pros and cons, possible benefits verses, negatives. Side effects verses feeling better, or a relief of a symptom. They are worth a try, everyone is different from what their symptoms are, which symptoms are most bothersome to them, what other medical conditions they have. that the treatment has to be just as varied.

It sure would be nice if IC was a cookie cutter disease and if your cut out is this you do this and it works, but only in a perfect world I guess.

MG

[Mothergoose]

Good luck let me know if raiseing the bed ends up helpping for you.

MG

[Amaasye]

29 years old

I was diagnosed with IC about 3.5 years ago. Thank God that I don't have urgency issues... however, I am constantly in pain. The pain starts in my groin, bladder area and lower back and then radiates down, covering my entire lower body.

Tramadol has been the one and only pain med that has allowed me to live a normal life. I take 2 (50 mg) pills in the AM and 2 in the PM. Without it, I am severely debilitated. I tried Elmiron for a few months and saw no progress... and I couldn't afford to continue taking it (no insurance). I have adjusted my diet over the past couple of years.... no spicy food, no coffee, etc... but, I can't really tell the difference.

My urologist recently prescribed me Elavil. I haven't started taking it yet because I am worried about taking it together with Tramadol. I have read horror-stories about doing so. Does anyone here have experience in taking Tramadol and Elavil together?

Besides that... one day at a time.

I take at least 2 tablespoons of pure raw natural honey every day.

I take at least 2 tablespoons of ground black-seed (nigella sativa) every day.

I consume a lot of water.

And of course.... Tramadol.

[bobspez]

Good luck let me know if raiseing the bed ends up helpping for you.

MG

After 3 weeks without a bad flare up, I had one last night. Last night I was up 4 or 5 times an hour until 6:30 AM, when I remembered to get the microwave heating pad. Slept on my back with the heating pad on my bladder and groin and then only woke up once an hour (3 times) until 10:15AM when I got up. So I got about 3-1/2 hours of decent sleep. The three times I woke up between 6:30AM and 10:15 AM I was dreaming, so I guess that was REM sleep.

I felt half wiped out today, but not totally wiped out. We have been on the inclined bed about 6 weeks now, and we both agree it is helping me get up less at night. Before we raised the bed I was having one to two totally sleep deprived flare nights a week, and now have only had one partially sleep deprived night after three weeks. Most nights I am getting up 4 or 5 times in 8 hours (not counting when I get up in the morning) and since I can go right back to sleep after voiding, I feel reasonably well rested with at least 6 hours of actual sleep.

I have to conclude that the inclined bed is helping. It's not a cure, but the heating pad and inclined bed are two things that have taken me from desperation to feeling at least partially in control. :)

Bob

[Mothergoose]

glad to hear this is helpping you.

MG

[rebbYK]

This forum has been a great help to me as I have suffered with this disease for the last 3 1/2 years, so I thought I would pass on what has truly worked for me.

I think you have to realize, that for whatever reason, you have a CHRONIC disease, meaning a simple cure is not going to happen. And you also need to realize that your bladder is damaged goods , and it is going to need special care for you to feel good. What this does not mean is that you are going to have to continue suffering, you don't , you can feel 100% better. But you are going to have to continue to do the right things for the rest of your life to feel good.

Having said that, this is what worked for me. I went on the IC diet , step by step, removing all the top things. I found that Coffee, Chocolate, Multi-Vitamins, Tea, Soda, Wine, Alcohol, Tomatoes ALL were a source of the problem. So they all had to go. Perhaps you will find other things and perhaps some of these won't bother you, but if they do , they gotta go. I also only drink Evian water. I found certain waters bothered me too, like Poland Spring.

I made the mistake of getting better for a while then slowly bringing these things back and was feeling okay for a while. But within a month or so, I was back to square one. You cannot kid yourself, you have a chronic disease and it needs to be treated everyday. I was on and off with the diet for about 2 years. Until I really realized that I was not going to get better, then I understood I needed to deal with this everyday, for the rest of my life.

I also highly recommend that once you have given up all of the things that don't work for you, that you go on a course of the Cysto-Protek , supplements. Wonderful product, that will help you to heal. I take 2 , 2 x per day, was a big help.

I would also warn against trying to counter balance. Like drinking coffee and taking a prelief. I think prelief is a great product and it is good to get you back to ph neutral , but if you are always battling back and forth, eventually , you will loose.

It is really hard to give up things like coffee and chocolate and wine. But that is how you feel better. I suggest to tell your friends and family and you educate them, so they can support you and help to keep you in a healthy state. I'm lucky , beer does not bother me, so I can enjoy that, but I was a serious coffee and chocolate lover , so it was hard to let go of. But let me tell you it was worth it to feel 100% normal.

So that's it , today I feel 100% better , I am a normal person again. I hope this can help you to get to that place as well.

[agilityme]

That was a great post Reb. Thanks for sharing :)

Pam

[bobspez]

I definitely agree this is a chronic condition, and the bladder is definitely damaged. I am not as sure about the diet. In my case the diet has some effect but it's not consistent. There are things that bother me sometimes and not others, and it seems to change. For example, I eat honey and raisins in my oatmeal for breakfast, and that that works fine for a few weeks, then my nocturia is worse and I get the idea that the raisins are bothering me so I switch to greek yogurt and honey, and that is OK. With the exception of hot and spicy foods (like Mexican) or Chinese food, or beef or vinegar, Italian sauce, hard cheese or citrus, I am finding that over the course of a year, many foods that bothered me are OK in small doses (eg, dark chocolate, spinach pies, ham in the can, Jack Daniels whiskey, coffee). For me, being able to eat these foods is what makes me feel normal. But we are all different. Maybe that's why the doctors can't find a cure.


This forum has been a great help to me as I have suffered with this disease for the last 3 1/2 years, so I thought I would pass on what has truly worked for me.

I think you have to realize, that for whatever reason, you have a CHRONIC disease, meaning a simple cure is not going to happen. And you also need to realize that your bladder is damaged goods , and it is going to need special care for you to feel good. What this does not mean is that you are going to have to continue suffering, you don't , you can feel 100% better. But you are going to have to continue to do the right things for the rest of your life to feel good.

Having said that, this is what worked for me. I went on the IC diet , step by step, removing all the top things. I found that Coffee, Chocolate, Multi-Vitamins, Tea, Soda, Wine, Alcohol, Tomatoes ALL were a source of the problem. So they all had to go. Perhaps you will find other things and perhaps some of these won't bother you, but if they do , they gotta go. I also only drink Evian water. I found certain waters bothered me too, like Poland Spring.

I made the mistake of getting better for a while then slowly bringing these things back and was feeling okay for a while. But within a month or so, I was back to square one. You cannot kid yourself, you have a chronic disease and it needs to be treated everyday. I was on and off with the diet for about 2 years. Until I really realized that I was not going to get better, then I understood I needed to deal with this everyday, for the rest of my life.

I also highly recommend that once you have given up all of the things that don't work for you, that you go on a course of the Cysto-Protek , supplements. Wonderful product, that will help you to heal. I take 2 , 2 x per day, was a big help.

I would also warn against trying to counter balance. Like drinking coffee and taking a prelief. I think prelief is a great product and it is good to get you back to ph neutral , but if you are always battling back and forth, eventually , you will loose.

It is really hard to give up things like coffee and chocolate and wine. But that is how you feel better. I suggest to tell your friends and family and you educate them, so they can support you and help to keep you in a healthy state. I'm lucky , beer does not bother me, so I can enjoy that, but I was a serious coffee and chocolate lover , so it was hard to let go of. But let me tell you it was worth it to feel 100% normal.

So that's it , today I feel 100% better , I am a normal person again. I hope this can help you to get to that place as well.

[bobspez]

Just a follow up. My condition continues to improve.

A few weeks ago, with my nocturia improving, I started to experience complete urinary retention with sharp kidney pains in the morning several times a week. It was like my bladder went to sleep around 4AM and despite intense urgency I couldn't urinate without turning over to my other side in bed for 5 minutes, or walking around for several minutes to get the flow started. To counteract this I went back on the Flomax (.4mg) once a day in the evening. Then within a few days the retention improved but my nocturia got worse. So I bought some empty gel caps online (#1 size, slightly larger than the Flomax) and made up my own half dose .2mg. capsules, by tapping the Flomax into the gel caps. I started taking one .2mg. capsule once a day around 10:30AM. Since losing a half night's sleep 11 days ago, I haven't had a bad night since. They have all been good to average. I have been getting up between 2 and 5 times a night, but am able to go right back to sleep, so I find this acceptable. I have not had a return of the urinary retention in the morning. The half dose taken in the morning, reduces the Flomax side effects and I find it is improving the nocturia and urgency as well as preventing the complete retention.

When I sometimes (several nights a week) start to flare in the evening (voiding every 10-20 minutes for several hours) I just stay up watching TV until 1 or 2 in the morning, then go to bed once the voiding is less than every half hour. I use the microwave heating pad to cover my groin, and sleep on my back, which lets me go to sleep fairly quickly as it calms the bladder and stops the flare.

So for me, at this time, the half dose of Flomax every morning, staying up until the flare subsides somewhat, using the microwave heating pad, and the inclined bed, are all big keys to the puzzle. I am feeling 2/3 normal again.

There are things I avoid eating (like beef, citrus, hard cheese, and spicy sauces) but I can have some foods in moderation which I avoided, like coffee and Greek yogurt in the morning, dark chocolate, roast pork, fried panko shrimp, miniature spinach pies, and a bit of Jack Daniels and seltzer every evening. For some reason, about an hour or two after drinking my weak Jack Daniels, my bladder is calmer (and so is my mind).

For me the frustration, anxiety and panic of IC were far worse than the nocturia, bubbling bladder and loss of sleep. As long as I can keep chipping away at it, finding things to cope and improve, I can keep a positive attitude going. The posts of the other members of the group have helped in this regard enormously as well. Thanks to all.

Bob


After 3 weeks without a bad flare up, I had one last night. Last night I was up 4 or 5 times an hour until 6:30 AM, when I remembered to get the microwave heating pad. Slept on my back with the heating pad on my bladder and groin and then only woke up once an hour (3 times) until 10:15AM when I got up. So I got about 3-1/2 hours of decent sleep. The three times I woke up between 6:30AM and 10:15 AM I was dreaming, so I guess that was REM sleep.

I felt half wiped out today, but not totally wiped out. We have been on the inclined bed about 6 weeks now, and we both agree it is helping me get up less at night. Before we raised the bed I was having one to two totally sleep deprived flare nights a week, and now have only had one partially sleep deprived night after three weeks. Most nights I am getting up 4 or 5 times in 8 hours (not counting when I get up in the morning) and since I can go right back to sleep after voiding, I feel reasonably well rested with at least 6 hours of actual sleep.

I have to conclude that the inclined bed is helping. It's not a cure, but the heating pad and inclined bed are two things that have taken me from desperation to feeling at least partially in control. :)

Bob

[sshannon74074]

I'm a 42 yr old male with ic for 5 yrs. does anyone their symptoms dissapear the first thing in the morning when you first wake up? I can be in the worst flare and if I get a good nights sleep the pain will be almost non existent in the morning but the longer I lay in bed awake the worse the symptoms become. I think my pain stems from an allergy to a chemical my body produces during the day. stress also must increase this chemical because my symptoms get worse with increased stress. my pain usually comes on pretty strong at around 10 am and peaks at night. Nothing has worked consistently for me except not being stressed out.

[Rope_Wrench]

Wow, sounds like we were diagnosed around the same age. I began having symptoms about two years ago but was not told it was IC till this past summer. I think am one of the lucky ones and don't have a lot of pain with my IC. I have not noticed a lot if any change as the day goes on. Seems to stay pretty constant unless I eat something I shouldn't.
You mind if I ask you a question sshannon? When you were first diagnosed, did you have a lot of pain or did it progress over time?

[sshannon74074]

It has stayed about the same since I was first diagnosed. It started when I would chew tobacco and I thought that when I stopped the habit that the pain and symptoms would go away but they never did.

[bobspez]

Just a quick follow up. My last three bad flares (up all night) were on 11/6, 11/26, and last night 12/21. All in all, this is a vast improvement from when I was flaring once or twice a week.

I've been taking flomax for about 3 weeks now. A few days ago I resumed taking the full .4mg /day dose as my retention in the morning was starting to come back.

Last night's flare was voiding about every 15 minutes until about 6:30AM. Today I took my flomax at noon, thinking
it might wear off a bit before I got to bed. Also last night for dinner I had spinach soufle, which may have acted as a diuretic for the rest of the night. Spinach has had this effect on me before, but I wanted to give it a shot. I tried the heating pad, but it didn't work. Also I got a bit panicked, so that made it all worse.

I don't know if it's just me, but the psychological aspects of the flare are probably worse than the physical. Losing a night's sleep isn't the end of the world (I even used to work the occasional double or triple shift before I retired - and losing sleep was no big deal), but after 5 or 6 hours of going every 15 minutes or so, logic flies out the window.

Bob




Just a follow up. My condition continues to improve.


Bob

[Duzty]

Hello,

I was diagnosed with ic, myalgia, ibs, and chronic prostastitis when I was 26 years old. I am now 40. I have tried every form of treatment that you can name. Physical Therapy, Elmiron, Amytriptiline, Soma, Liboderm combo, Interstim Unit installed in 2004, what a nightmare the interstim turned out to be for me, Im still not the same because of it. I have done stress management, meditation therapy, accupuncture, if it has been available I have tried it.
I feel pain everyday of my life and have for some years. I too have penile pain sometimes moreso after sex but have always blamed that to having to do self-catherization.
I know this does not seem of much help to you but you are not alone with the penile pain. I take morphine 60 mg 3xper day, Percocet 10 mg 3xper day, Clonzepam 2 mg at bedtime and Serequel 100 mg at bedtime.
For years I tried everything in the world to avoid taking narcotics but finally had to surrender to a cocktail of medications that work for me. And that is the key I think is that we are all different and need to work with meds until we find an answer that gives us a better quality of life.
For the penile pain, which with me is more of a burning throbbing sensation, I take pyridium and soak in the tub til my meds take effect. Also I do benefit some from trigger point injections.
I don't know what all you have tried but I hope I helped some. If you need to talk more about this email me..

Best Wishes to a peaceful day......





4

[bobspez]

Hi Duzty,

It's interesting you mentioned self catherization as a possible cause of pain. On the advice of my urologist I started self cathing weekly about a month ago to keep scar tissue from reforming near my prostate after a Greenlight Turp I had back in June of 2012. This week a stabbing, burning pain in my bladder area (just above the pubic hair) has gotten out of control. It comes on a few seconds after I start to pee and slows my stream down to a dribble, then fades in 6 or 7 seconds as my stream dribbles out for another 30 - 40 seconds. Test strips don't show any infection and when I self cathed I measured my post void residual as very low (10 to 50 ml), so I am not in retention. But something about having to go urgently triggers this stabbing burning pain.

I was doing much better when I did my last post about 14 months ago. I went for a greenlight laser Turp in June 2012. My urologist also said I was filled with pus when he did the Turp, so he said I must have had chronic non-bacterial prostatitis for years (it didn't show up on urine tests). He said my prostate was also enlarged to 120g. and he removed about 70g. After a really painful two month recovery I had 4 good months until the beginning of this year when symptoms of a restricted flow and stabbing burning pains at the start of urination returned.

My uro did a cysto exam and said I had scar tissue just below the prostate which he removed about 6 weeks ago and advised me to self cath once every week to 10 days to keep the channel open. I'm still peeing with urgency about 12 to 15 times a day, about 100ml per time, so that brings a pretty regular stream of what feels like a stab with a hot knife for 6 or 7 seconds. I don't take any meds except for Blood Pressure pills, so the 500 mg tylenol I just started taking today has lowered the pain from about a 9 to a 6-7. The relief was just blessed. I'm going to stop the routine cathing for a while and see if that helps. I guess I'll deal with the scar tissue when I have to.

It strikes me that there are no easy answers here. Seems like you address one thing but there's always something else ready to take it's place. And for some people the cure can be worse than the disease (like with the stim for you), but it also struck me how when you are dealing with pain on a regular basis, that stopping or at least taking the edge off the pain becomes the most important thing in the world.

It also occurred to me that my state has medical marijuana, and I wonder if that would work as well as pain killers? I haven't smoked in 30 years and never even liked it that much, but if it worked, I wonder if it would be a better long term solution.

Bob


Hello,

I was diagnosed with ic, myalgia, ibs, and chronic prostastitis when I was 26 years old. I am now 40. I have tried every form of treatment that you can name. Physical Therapy, Elmiron, Amytriptiline, Soma, Liboderm combo, Interstim Unit installed in 2004, what a nightmare the interstim turned out to be for me, Im still not the same because of it. I have done stress management, meditation therapy, accupuncture, if it has been available I have tried it.
I feel pain everyday of my life and have for some years. I too have penile pain sometimes moreso after sex but have always blamed that to having to do self-catherization.
I know this does not seem of much help to you but you are not alone with the penile pain. I take morphine 60 mg 3xper day, Percocet 10 mg 3xper day, Clonzepam 2 mg at bedtime and Serequel 100 mg at bedtime.
For years I tried everything in the world to avoid taking narcotics but finally had to surrender to a cocktail of medications that work for me. And that is the key I think is that we are all different and need to work with meds until we find an answer that gives us a better quality of life.
For the penile pain, which with me is more of a burning throbbing sensation, I take pyridium and soak in the tub til my meds take effect. Also I do benefit some from trigger point injections.
I don't know what all you have tried but I hope I helped some. If you need to talk more about this email me..

Best Wishes to a peaceful day......





4

[Duzty]

Bob,

I have heard from several people that medical marij. helps them. It is not legal in the state I live in so I would not consider it but if it is available to you, why not give it a try and see if it works, if it does, then there is your answer, if not, you should go to your doctor and see about getting some type of pain control. Needless suffering is beyond me.
Yes each time I self cath it feels as if someone has lighten a match and stuck it up my penis and burns all the way into the bladder and is not very comfortable coming back out either.
What works for one does not work for another so it is a total guessing game until you find your personal answer so don't give up. Try and keep trying, never take no for an answer and know that with your illness you are your best advocate as I have been to doctors that have tried to convince me that I am crazy in the past.
Yes, Interstim works for alot of people and some find it a godsend, me on the other hand, it was a nightmare for me as I was misinformed that is was for the treatment of pain and later found out that it is designed for urinary frequency, it also malfunctioned and when this happens most uros will tell you you are crazy and that this is not possible but mine malfunctioned to the point of causing damage to my scratal and siatica nerves as well as my spine and have irreversable nerve damage do to it. Like I said, this does not happen to all, and some have had great success with it and god thank you for that, this is just my unfortunate story.
I hope you find comfort soon but if you suffer with penile burning, pyridium is a very good medicine for that. It is non-narcotic but will turn your urine orange or blue...If I can be of further assistance private message me or email me at dw57@hotmail.com.

Duzty

[bobspez]

Duzty,

Thanks for the reply.

Bob

[bchboy328]

29 years old

I was diagnosed with IC about 3.5 years ago. Thank God that I don't have urgency issues... however, I am constantly in pain. The pain starts in my groin, bladder area and lower back and then radiates down, covering my entire lower body.

Tramadol has been the one and only pain med that has allowed me to live a normal life. I take 2 (50 mg) pills in the AM and 2 in the PM. Without it, I am severely debilitated. I tried Elmiron for a few months and saw no progress... and I couldn't afford to continue taking it (no insurance). I have adjusted my diet over the past couple of years.... no spicy food, no coffee, etc... but, I can't really tell the difference.

My urologist recently prescribed me Elavil. I haven't started taking it yet because I am worried about taking it together with Tramadol. I have read horror-stories about doing so. Does anyone here have experience in taking Tramadol and Elavil together?

Besides that... one day at a time.

I take at least 2 tablespoons of pure raw natural honey every day.

I take at least 2 tablespoons of ground black-seed (nigella sativa) every day.

I consume a lot of water.

And of course.... Tramadol.


What stories have you heard of using elabil and tramadol together besides being a zombie?

[Duzty]

What stories have you heard of using elabil and tramadol together besides being a zombie?

Hello,
In response to your question and mind you I am no doctor, so I can only reply from my own experience, tramadol is not a drug that I can personally use. It caused me to have a seizure and I think that you should research the drug and look at the list of side effects it can cause, not to scare you as tramadol has worked for many but one of the side effects that scared me was the possibility of brain bleeds.
I also had no result with elavil, also called amitriptiline.
I think that you should first talk to your doctor as lortab, or vicodin is a little stronger than tramadol and you might not have to take as much as you do of the tramadol also sometimes called ultram. This might also give you the opportunity to not take the elavil at all.
I am not sure of this and you most certainly should consult with your doctor before doing anything, it is just an idea.
I have been dealing with this disease since I was 26 with now will be close to 20 years and let me tell you I have tried everything known to man to deal with this disease. Knowing that you are not on your own helps me alot with depression as alot of people do not understand what you go through dealing with constant pain and could not understand unless they themselves were going through it.
I first was on a combo of elavil, soma, zoloft and lidocaine patches. This failed, so I went on to try and Elmiron trial along with an entire year of physical therapy, in which they would take this small device about the size of your pinky and insert it into your anus, it would give off a strong vibrational charge kind of like the feel of a tense unit. It was quite painful to me and for a year I tried this but again was unsuccessful. The Elmiron works great for some but ic and ibs go hand in hand with alot of people and the Elmiron not only caused me hair loss but bad migraine headaches and severe ibs flare-ups so I had to quit taking it. I then went on to sticking to the ic diet in which I still do as it helps some and started getting trigger point injections, in which I still get them as I seem to benefit from them as well.
I then was offered an interstim unit to be installed in my body. Now back in 2004 they told me that it would help with pain but I later found out that it is not designed for pain just urinary frequency. Now don't get me wrong the interstim has worked for many and many have considered it to be a godsend to them, but my personal experience was it was a nightmare for me.
About 2 years after having it installed in my body it malfunctioned very badly and would go out of control shocking me severly when I went through metal detectors or when I visited someone at the hospital, and the emergency room cannot help you when something goes wrong with it as they are not equipped to deal with such matters. The last time I had a nightmare problem with it I had to be heavily sedated and wait for a meditronic rep to get to the hospital and the closest one to my area was 20 hours away and then after they showed up they could not get it turned off.
Luckily the battery eventually died in it and then the interstim broke loose from the pocket that was formed to put it in and that is what I am dealing with today. It caused spinal damage and severe damage to my scratal nerve as well as the siatic nerve in my body and now I walk with a bad limp.
Now again I have to stress that this was my personal experience with interstim and like I said it has worked great for several people that I have talked to and has even changed some of their lives for the better so it might be something that you wanna research and discuss with your physician.
I now have constant pain, as I have severe chronic ic, myalgia, chronic prostastits and severe ibs and have resorted to taking ms contin 60 mg 3 times a day, percocet 10 mg 3 times a day for breakthrough pain, I take clonzepam 2 mg at bedtime and serequel 100 mg at bedtime as this disease as well as the treatment I have gotten from some physicians has caused me to have post traumatic stress disorder.
I in no way want to scare the crap out of you but I did not do the research I should have done before having all the things done that I did.
With this disease you are definately your own advocate, research anything and everything before you take that step to do it and know your body, you are the only one that knows how you feel, never take no for an answer and never let anyone, physicians included make you feel like you are crazy or belittle you in any way.
I now have gotten on a cocktail of medications that work best for me and along with these I use stress management, meditation, trigger point injections and stick strictly with the ic diet.
You know what is best for you so it might take you a while but try and find the right medications, etc. that work for you and increase the quality of your life.
I hope I have not scared you too much with my story but want people to know what could possibly happen if you do not research things before doing them. Self aware if half way there.
Like I said I have been dealing with this for a very long time, but never take the advice of anyone without researching for yourself and talking with your physician before doing anything.
If I can help in anyway, please let me know as I am here to help inform and improve the quality of the lives of people that have this horrible disease...

Much luck and may god bless and keep you,
Duzty

[Jaap]

Dear Alex,
I was wondering if you are completely free from all symptoms? I see your post is over 2 years old. I hope hearing from you soon!

[bchboy328]

What stories have you heard of using elabil and tramadol together besides being a zombie?


I have heard of a few stories, but I take these two medicines strictly right before bed. It did take my body about three weeks to get used to new meds, and yes you will become a zombie if you try to take them any other time.