Man In Hell

[Brian]

Ok, I'm in like the worst flare of my life so here comes a long story. I thank in advance anyone who takes the time to read it...

Hi! My name's Brian and I've posted on here once before but haven't been back in a while. Here's my story (and yes, I'm a man...lol.) I started developing a kind of intense burning every so often after ejaculation. (Maybe 4 times a year) This started around the age of 16 or so. I went to the doctor and he tested me for STD's and UTI's. He said I had a UTI and put me on cypro and peridium plus. I took it for the required time and then assumed I was cured. Everything was ok for a little while. When I was about 19 or 20 the same problem showed up again but only once or twice (but the once or twice it did show up was much more intense then the previous times). I went to a different Uro. He said I didn't have any STD's or UTI's and asked me if I'd been having sex without a condom. I said I had (I had a serious girlfriend at the time and she was taking birth control) and then he said that I probably had some "Vaginosis" which he said was from Vaginal Wall iritation...I guess because I was only 19 or 20 this sounded reasonable at the time.

I let it go and over the next 2 or 3 years my symptoms would worsen. Eventually when I was 23 my symptoms got bad enough for me to seek more evasive and proactive action. I went to another Uro. This one, examined my prostate and said that he felt it was infected and I had Prostatits. He sent me home with a long course of anti-biotics. This, of course, didn't help. When this failed he suggested a Cysto and Hydro Distention in the hospital. When I woke up in the recovery room he was standing over me and said the 2 words that would haunt me forever: Interstitial Cystitis. After I got out of the hospital he explained to me what IC was and what I was looking at (he also told me I had a little Prostatis and that he cauterized the infected areas of my prostate away). I did some research myself and combined with what he told me I probably learned about 40% of what I needed to know. He suggested that I have 6 weeks of bladder instillations via a catheter. I was very very scared of this at the time and because my symptoms were nothing back then compared to now, I declined and wanted to try the oral medicines I had read about first. I fought with my Uro about it as he kept pushing the instillations. I got frustrated and gave up for a little while. I didn't feel that awful after my cysto/hydro and felt ok for about 6 months. Then it started getting worse in a big way. With every month that passed I felt worse and worse. After about 4 months of that, it escalated into an incredible flare-up in Feb. 2004 that I'll never forget. It last about 2 months and was the most pain I had ever felt up to that point in my life.

After that, I decided to get to a new Uro and get on this Elmiron. My next Uro was a little more sympathetic to my wants and put me on Elmirom (3X a day) and Detrol LA (1X a day). After about 6 months of constantly getting worse, under my suggestion, he switched the Detrol to Ditropan XL, left me on the Elmiron and added Elavil. The Elavil didn't help so I stopped taking it to avoid needless weight gain and I kept praying that the Elmiron would work. I had heard it could take up to a year so I didn't lose hope yet. By the end of 2004 I was so bad that I got extremely depressed. I didn't really want to live anymore and some days - I still don't. Anyway, my new Uro convinced me to have another cysto/hydro since he wasn't the one who diagnosed me, and he felt it might be therapeutic for me too. I had my 2nd cysto/hydro on May 4th 2005.

I feel worse than ever. Every single time I ejaculate it puts me in a flare for about a week. Each time, the worse flare yet. I feel like I'm getting worse with every month that passes. My doctor wants me to try the installations - saying that they have the best success rate but I'm still really scared. I'm not that scared of the pain from the procedure really anymore (I'm in so much pain now during flares, who cares) - I'm worried it will make me worse. It seems I've gotten worse after both major procedures I had. Could be coincidence, but...

My Symptoms:
Pain & Pressure in the bladder & lower abdomen
Pain & Burning through the penis
I DO NOT have frequency or urgency AT ALL (I can literally sleep 12 hours without having to go to the bathroom)

When I'm not in a flare, my symptoms fluctuate between a 3 and a 5. When in a flare - about 7 -10. I now flare after any sexual episode.

Here are some observations I've made:
1. Very weird. My pain almost always gets worse when I lie down. Especially when I'm in a flare. I felt around a 6 earlier today. I came home and lied down to go to sleep and within 20 minutes it shot to a 9. I usually sleep on my back and try not to sleep on my stomach.

2. Either my stomach seems to effect my bladder or vice versa. Usually (and there are exceptions, but not many) if my stomach is upset my bladder discomfort will go up a little. Also if my bladder is upset, I may get a stomach ache and have to go to the bathroom.

3. Going to the bathroom (bowels) seem to give me a short mild flare.

4. Pretty much any kind of active movement, especially running will pretty much immediately give me a flare verying in length.

5. If I'm flaring, touching my penis or genital area at all will usually make it a lot worse for 10 minutes or so.

As of June 2005:
No STD's
No UTI's
Diagnosed twice by two different docs as having IC (A weird thing is that the most recent cysto - the doctor said my bladder looked "fine" and he didn't even think I had IC but he said the biopsy he took came back "suggestive of IC")
No Prostatis (The Uro said regarding my May 2004 Cysto)

So in summary, I'm in hell. I'm so depressed that this is all I think about and then when I get a flare like the one I'm in right now, I don't even know what to do. Nothing helps. Every Uro I ever had, including my current one, pretty much refuses to give me pain meds. I don't understand it. I finally convinced my doc to send me to a pain management center. I'll be going in 2 weeks and I hope to god I get some help with my pain there. The doc gave me percocet when I came out of the hospital but cut me off after 3 weeks. I actually started smoking marijuana to help with the pain (does anybody think that could be making me a lot worse - due to it being an obvious irritant??)

I just don't know what to do. I'm at my wit's end. I guess I'm going to try the instills but I'm scared to death. My Uro says that if the instills doesn't work - he's sending me to NYU because he's out of ideas.

God, I can't have sex, I don't even remember what it "normally" feels like to urinate. I "feel" my bladder 24 hours a day. And I'm a 25 year old guy from N.J. Where's my made-for-TV Movie? lol.

I'm so sorry about how long this post is. Thank you all who actually read through this huge behemoth of a post.

Warm Wishes to All
-Brian

[ICLori]

Welcome, Brian and hugs to you! I'm so sorry for what you've been going through. This disease is so incredibly hard to live with, and many days we feel like giving up but we have to just hang in there because they are doing research every day and coming up with breakthroughs all the time and I truly believe it's only a matter of a few years before more effective treatments come out or maybe even a cure. So please hang in there because I think that you have many good days yet ahead of you and reason to hope!

DMSO treatments have helped a good many IC'ers, and I think I read once that they are especially effective at relieving pain. I haven't heard too much about people getting worse from them. Sometimes you hear of people getting an infection from instills but that's usually because the doctor forgets to put us on antibiotics to prevent infection. So there is reason to hope that this would be very helpful for you, maybe even let you feel like normal again.

I think it's really a great move on your part to look into pain management because those doctors are more likely to be more comfortable with prescription pain relievers and more knowledgleable - I hope they will help you and there's good reason to believe they will.

I know this has been terribly hard on you, but you just have to hang in there a little longer because you've got some options that I really feel optimistic about, that they will help you. Plus I'm convinced that new treatments will be coming out in the future and that alone is worth sticking around for.

Please promise me that if you have one of those times where you want to give up, you call a friend or a loved one or a health care professional and don't let yourself be alone. It's normal to have these feeling when we are facing something so difficult every day, but we have to just hang on and get through one more day because tomorrow might be the day our miracle happens.

(((HUGS))) I'm glad you are here.

Blessings, Lori

[ICNDonna]

I'm so sorry you're having such a tough time. Hopefully one day soon you will find a solution and will feel better. I am one who has been helped by instillations. In my thirty years with IC, I have tried many different ones. Heparin helped, but not as much as DMSO. When I started with DMSO, the first few treatments left me in pain for several days. I was almost ready to quit when I slept through a night for the first time in many years --- that was enough to convince me to continue and the instills got easier over time.

Some of the bladder "cocktails" are reported by others here to be very soothing.

Are you following an IC diet. That can be extremely important, especially avoiding things like sodas, coffee, fruit and fruit juices, alcoholic beverages.

Sending well wishes,

Donna

[diane57]

Brian you have had a very tough time of it!! It's especially horrible because you're so young. I'm so sorry you are going through this!

Many of us have been where you are, and most of us have improved to where we (almost) have a normal life. You're doing exactly the right thing by seeing different doctors, trying different treatments, just keeping on keeping on. I know it's exhausting though!

I have to second Donna's recommendation about following the IC diet. I found it to be a total pain when I first started it because it's very hard to change our basic food habits - I felt totally deprived of my favorite foods. I just kept trying it the best I could at any given time (although sometimes I just HAD to have a cup of coffee) and after a couple of weeks my symptoms really improved - then I was at the point where I could find out exactly which foods were bothering me and then at least I'd be making an "informed decision" if I decided to eat pizza or whatever. I often felt like I couldn't follow the diet in its entirety and I would just do as much as I could at the time - for instance, I would avoid coffee, alcohol, citrus and tomatoes (the worst offenders) at the very least, and try to do the rest of the diet when my mental diet muscle got a little strengthened lol. I tried to take baby steps if I couldn't take big steps. Now the diet is so second nature to me that, even though my IC has improved a lot and I'm not that food sensitive anymore, I still usually order white pizza, alfredo sauce, etc. with my pasta - it's sort of like the diet integrated itself into my brain and now this is just the way I eat and I don't feel deprived anymore.

Also be careful of any vitamins or OTC medicines you might be taking. In particular, vitamin C, B vitamins (even in commercial cereals with added B vitamins - which is most of them - you can get cereal in the health food section with no added B vitamins), aspirin and ibuprofen (Advil) can all cause bad flare-ups. My IC is mild-ish, but if I have B vitamins in any form I'm in pain for several days.

You might also look into a book called "A Headache in the Pelvis" - it's sold on Amazon.com, can't remember the author, but it talks about a muscle tension component to pelvic pain. A lot of people on the board have read it and said it helped them. If you think it applies to you you can go to a physical therapist who specializes in pelvic pain and get evaluated - the physical therapy treatments have helped a lot of people.

You might also try some short-term fixes. Have you tried about a half teaspoon of baking soda in a glass of water? That seems to lessen the pain for a lot of people. You could also take a couple of Tums to see if that helps. Also consider the alternative products that are sold in the ICN shop here at the ICN - the Desert Harvest aloe vera or Prostaprotek (I think that's what it's called - it's also called Algonot Plus I think)- both of these take about 3 months to work, but again, people report good success with them. I had a good improvement with Cystoprotek (the girlie version of Prostaprotek), but it was a very slooooooooooooowww improvement over about 4 months time.

Please don't give up. The pain and frustration are horrible I know, but it seems that almost everyone on the boards is improved from when they were first running around to doctors trying to find good treatments. There are many things for you to try - instillations have helped many people - my uro says that's the quickest route out of severe pain - and pain management has helped many people too. If your doctor runs out of options, definitely go see another uro who specializes in IC and continue trying things. We're all in your corner, we send you our support and hope things improve for you very soon.

Diane

I

[massagedoula]

I would second the recommendation to read "Headache in the Pelvis". Have you ever been checked for PFD (Pelvic Floor Dysfunction)? It might be a thing to do in order to rule it in/out as a cause of your symptoms.

I am originally from NJ, Lavallette NJ at the Jersey Shore.....

[emilyrose197377]

Brian, Welcome to the ICN . I am very sorry you are going through a rough time right now . You are in my thoughts and prayers . I hope your flare passes quickly. I am glad you have found us the members here are great and have helped me alot I was just dx back in april.

Take Care
Kim

[Leslye]

Hye Brian, My name is Leslye & it is very nice to meet you! I am SO SORRY that you are having such a rough time with your IC right now. I know that it is difficult but try to find a Dr. that will treat you for your IC. It might even be just a Primary Dr. Not a Uro. The Uro that was treating me got mad after I did not like the Interstim(that is in another board, lol) My primary is doing his best to treat me & I am looking for another Uro. I am wondering, are you taking Anything for IC? I have had IC for a least 10 yrs but was diagnosed 2yrs ago. I have tried diet & meds but I am one who just seems to keep getting worse or staying the same(no improvement) I understand the pain & the (smoking) I have been there & at times I'm still there. I do not believe that smoking gives you Bad flares. But only you could answer that as we are different in what bothers our IC. As long as I have my Prelief I can tolerate ALOT! I hope you find the Dr. that you need. Do not give up there are Good ones out there. If you ever need to talk or you are just feeling down, get on this site because there are so many Wonderful people who will listen. Hope you get to feeling better SOON!!

[mayray518]

I feel so bad for you. You were probably treated worse than a woman with IC because you were a young man and that is a low percentage of ICers. I hope you find something to help. Dont give up. I spent years bedridden until elavil helped me. have you tried that yet? You will get your life back eventually.

[SheriG]

:welcome: back tho the boards Brian. I think that the title of your post was quite acurate..it sounds like you really have been in hell as of late. It made me so sad with each new line I read..I wish I could come through the computer and give you a hug! :grouphug: You did not mention whether or not you have good support, either from your family, friends... If not, maybe you would consider talking to a therapist. It seems like IC can be bigger than all of us, and we all need someone to help us cope. ( Of course, we are ALWAYS here for you! )

In terms of your pain, I know that many of us go through this with our docs, and I think it is barbaric to see someone suffer like we ICers do. As Mayray says, they probably treat you worse because you are a man, and IC is thought to be mostly a "women's disease" (not that they treat some of us any better ). I urge you to get to the ER if you have unbearable pain. Sometimes they will help, and sometimes not, but it would be worth a shot. Also, can you possibly call the pain clinic and ask to be put on a waiting list in case they have any cancellations and could fit you in sooner? I just feel so badly that you have to live in such pain...I know what it's like, and it is no fun.

In terms of your sex life...well, I guess I cannot offer much in that area as mine is pretty much dead, but I am also 45 and have been married 21 years. At 25, you need hope and help. What about your primary doc? Mine is the one that I can talk to about anything, and he is also the one who prescribes my pain meds ( God bless him ) :angel: I hope that your girlfriend is understanding. Perhaps she can sometimes come to this site to not only get info, but to get some support as well. There is a thread called Families speak out ( or something like that )

In closing, as I read over what I have written, it seems like I haven't been able to give you any good advice. Please know that I will keep you in my prayers, and hope that you will keep in touch with us on the boards and let us know how you are doing.....Oh, one more thing...if you are not happy with your current URO, YOU KEEP SHOPPING FOR A NEW ONE. I KNOW IT IS TIRING AND TIME CONSUMING--ESPECIALLY WHEN YOU DON'T FEEL WELL, (sorry bout the caps, not meaning to yell!!!) but keep looking until you find one you like and who treats you well.

Please don't give up, and do take care of yourself, and if you need to vent or have questions, we are always here. Wishing you a brighter future with less pain! Sheri

[Brian]

Thank you to everyone so much for your prayers and advice. The people on this site truly are a testament to "good people getting the shaft" lol.

Anyway, to answer some of your questions...I try to follow the IC Diet. I slip sometimes. I occassionally have a cup of coffee (maybe 2 a month) and I occassionally have soda (but usually Sprite or Root Beer because it's caffeine free). I drink a ton of water a day. Probably a half-gallon or so. And I don't drink alcohol or eat any citrus/fruit juice anymore.

Thankfully I do have some support in my life. My mom is a saint and will do ANYTHING she can for me. Today, because I was in so much pain, she brought food & somethings I needed from the store right to my house. She also has a major health problem as she lives with Sarcoidosis & Limes Disease. So she def. has an understanding of what it's like to be in horrible pain and have some people pay you no mind. The rest of my family and my friends are supportive and would do anything I asked of them - but between me and you guys, I don't think they really believe me when I tell them how bad it is. I think only my mom truly believes me. But I guess it's hard for some people to understand. They care about me and mean well, but...well you know how it is.

Aside from the impending Instills, I've been thinking about trying some alternative options. I've tried Elmiron, Ditropan XL (Both of which I'm still on - the Elmiron for almost 16 months now) Detrol LA and Elavil. But I've heard some good things about the Aloe Vera Gel and the Prelief stuff. Man, it's so hard to get motivated when you feel like crap!!

Unfortunetely, I do not have a girlfriend right now. I broke up with my girlfriend over a year ago and, I know a lot of you are married, but let me tell you, it's hard as hell to go on a date when you feel like this. It takes your confidence and throws it right out the window. And when is the appropriate time to tell your date that sex puts you in more pain then getting your hand caught in a car door? lol. It's really hard you know. I often thought of purposely going out with someone that has IC so we can both understand how miserable we both are. Damn, I don't mean to sound so down. I do my best most of the time to keep my sense of humor about things and I'm a person that truly believes in the "laughter is the best medicine" theory, but right about now I could go for some painkillers!! lol.

Anyway, thanks again to everyone who read and replied to my post. It means a lot to me that all of you took that time. Everyone that is a part of this site is doing a wonderful service to people like me and countless others. You deserve all the appreciation and praise for your efforts.

You know, I often think to how IC changed me (mentally - I'm referring to). It's really weird how pain like this can really put things in perspective. My mom wants me to talk with a therapist but to be honest, I think I'd rather talk to someone else that has IC. I was thinking of going to one of these support meetings I've been reading about. I know they hold a couple in N.J. - and hey - if those people are half as kind as everyone on this site - then I'm sure it will be beneficial in some way.

Thanks for all the prayers and support. I feel for all of you as well. Anyone that has to deal with this awful disease should win a medal!!!

-Brian

[JAMIEL]

Brian,

I am sorry about all that you have been through. I live in New Jersey and although I am a woman I have only on thought. Dr. Moldwn (author of The Interstitial Cystitis Survival Guide) is my uro and he is at Long Island Jewish Medical Center in New Hyde Park, Long Island. Depending on where you are in New Jersey it is not a bad ride. He is one of the best IC doctors in the country and he has been my saving grace!!! If he takes your insurance you should consider seeing him. He has guest lectured on this website and is on the board on the Interstitial Cystitis Association (ichelp.org). He does have a chapter about men with IC etc. in his book. I have been to a few uro's before seeing him but he has really been the only one to help me. If you would like anymore information about him or have any other questions please feel free to pm me...

Jamie

[SheriG]

Hi Brian!
I was so glad :) to see your response on the boards. You talk of how others on the the boards have helped you, but you know, you may be helping someone without even knowing it. Many men with IC, or who think they may have IC,are leary about coming to this site, as it is compised of mostly women. You may have answered another man's questions, or given him the confidence to post here, just by your post! :)

I am so glad that your mom is so good to you. Sounds like she has stuff on her plate as well, but she obviously cares deeply for you, or she wouldn't have brought you the things you needed. I am sure that when you are feeling better, you will return the favor!

I have much more to say, but a raging thunderstorm is upon us, and I need to get this computer unplugged! More later, take care! Sheri G :grouphug:

[Daniel]

Brian,

My symptoms are quite similar to yours.

I have wondered if maybe I (and maybe you) were misdiagnosed, and rather have some sort of chronic (bacterial?) prostatitis. Such an infection might not be detected in a regular urine sample. I know that when I took cipro once it completely removed my symptoms.

Something to think about.

[Leanne41]

HI Brian

Just wanted to say your dtory really touched me because I really do know how it feels I'm only 21 and sometimes it feels so unfair that not only do we have this but we are so young also! Your not alone.

Leanne x

[fireflicker285]

I was in your position a number of years back. Have had this dread disease for 11 years now.... I just kept on the elmiron, also took a meditation/pain class. The deep relaxation REALLY helped. Also helped with the other stresses in my life.

Paxil has also given me a bit of relief. Just a bit. Somehow though I have managed to get through and my life is soooo worth living. I still hurt after sex. I have accepted the fact that as a youngish woman I will never have a normal sex life. I have a very understanding husband.

Please hang in there.

[Sarojini]

:grouphug:

So sorry to hear you are going through all of this. I understand painful sex; I guess I don't exactly get the same pain you do, as I'm female, but I do know what it's like to be going along and having sex and then, WHAM, something rubs wrong or whatever and the pain just explodes and radiates from my bladder on out... and then I have the urethral burning afterwards to look forward to. UGH. There are some things my husband and I do now that reduce the pain, and I am able to have decent sex now sometimes, but sometimes, well, the bladder takes over *sigh*

I can tell you that I used to take meds like Detrol and Ditropan, and they made the problem worse for me. They caused me to retain urine badly, for one thing, and they just seemed to increase my pain. My last uro switched me to Flomax, which is an alpha blocker medication usually used in men with enlarged prostates -- it's supposed to relax the bladder neck to make it easier to urinate, and, at least in my case, it has helped me a lot with retention-related pain. I don't know if you have this sort of issue, but I am sharing that part of my story because I want to illustrate that sometimes a switch in meds can help a lot -- even if you're on meds that are "supposed" to work for IC, they may not work for YOU. You may want to ask about the Ditropan/Detrol issue especially since you don't really have frequency or leakage, or just revisit your treatment plan with your doctor to see if making a few changes for a few weeks would make any difference at all.

In addition, I want to wish you luck at your pain clinic appointment... I hope they can help you lots!!! :)

[Brian]

Daniel - I don't think I was misdiagnosed. I wanted to believe that for a long time but I just had my 2nd Cysto/Hydro and was diagnosed for the 2nd time with this awful disease. The doctor also said that my prostate was "fine." I guess it IS possible that 2 doctors could have misdiagnosed me but I think it's very unlikely, unfortunetely.

Again, to everyone, I really appreciate all this feedback and support. Thanks again! I wish I could write more, but I'm at work right now and really busy - so til' later...

-Bri

[Julie B]

Hey Brian, hang in there.............eventually you will find a treatment or multiple treatments that give you most of your life back. I like the idea of investigating pelvic floor problems........you can get that book here on ICN also: Headache in the Pelvis (http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Books-ICandOAB.html&rtn=jb) It is filled with information that men who have IC can relate to.....

I would also back up the idea of not settling for a good urologist but get yourself to a GREAT uro. If you can get to Moldwin like Jamie suggested you may find your answers much sooner than you realize.

Also, because I am a dietitian LOL, I would love for you to take a closer look at your diet. Check for hidden things like MSG and soy or even preservatives in your food. Your trigger foods are going to be different than someone elses. For example, I can eat raspberries and bananas but other ICers cannot. There is a downloadable version of the IC diet on my website, along with food diaries and voiding and pain diaries..........www.NutraConsults.com/CCresources.html

I would also not hesitate to ask about hydroxyzine to take at night. You may be sleeping right through, so the sleepy part of the drug may not be necessary. But if you have increased mast cells present, the hydroxyzine can be very very helpful. (ProstaProtek may do the same thing for some patients)

As for ICers hooking up with other ICers, I have been thinking that for a long time LOL...................the other solution would be to give the partners of IC patients some Prozac or Paxil...........not only would they be more cheerful about having a sick spouse...........their libido would end up in the toilet too! (pun intended............and this is a joke folks LOL)

The best thing you can do is to keep talking about this with other IC patients. The support groups are a great idea........but so is this message board. The one thing I am grateful for since I was diagnosed is the wonderful, inspiring people that I have met who have IC. I am better for it.........hard to believe in your state right now..........but it is true............

Gentle understanding hugs................Julie B

[SheriG]

:hi: Brian, it's pesty ol Sheri again...I have not thouroughly read all the posts, but did you know that at our ICN store you can purchase low acid coffee, tea, and many other low acid items that you otherwise might deprive yourself of? I have tried a few products, and have yet to be disappointed. I am currently waiting to get some pear juice that I ordered, and am very anxious to try it. I love anything with pear flavor!

I really hope you are doing better, and are finding the support and answers you need here on the boards. Please remember...if the pain gets unmanageable, go to the ER, and get the care that you need and deserve. Wishing you all the best, and hoping that you will stay in touch here on the boards! Sheri G :)

[green_the_fish]

Hey Brian!
I'm really sorry you've been having a crappy time. Don't give up, though, there are still treatment options you haven't tried.

Here is my two cents:
*Go for the DMSO. It will probably hurt (possibly a lot), since you are a male, and it sounds as if your gentials are already irritated by your condition. However, I think it has a strong chance of helping you. Besides Elmiron, DMSO is the only FDA-approved treatment for IC, and it has a higher success rate than Elmiron. Many urologists consider it the most reliable treatment for IC. It may very well be the treatment that you need to feel normal again. I think if you can get over the pain of the catheter, you have a good chance at finding relief.
*Stop tokin' the Mary Jane. Smoking anything is bad for your bladder, and pot is definetely an irritant. Rule of thumb for IC- never put anything that smells spicy into your body, lol!
*Don't bother with Ditropan XL or Detrol. This is just my completely untrained opinion, but I think those medicines are usually only helpful to those who suffer from urgency and frequency. It sounds like your main problem in pain.
*Get thee to a pain clinic! I was never able to get uros to prescribe me pain medication, but I have had luck in getting breakthrough meds from pain clinics. I think that one reason I had a hard time is because of my age (16), perhaps this is also a factor with you. Some docs think that all of us young people are totally irresponsible and will get hooked on anything we try :rolleyes:
*Try Prelief and the diet. It could help you, and there's no nasty side effects involved (for a change, lol)
*If your uro sucks, get a new one. Don't be afraid to speak up regarding your own medical care or treatment. You deserve to be treated compassionately, so don't accept anything less.

Oh, and I have to mention: it is seems very odd to me that you don't have urgency/frequency. That's usually the main symptom of IC. Have you ever heard of Pudental Nerve Entrapment? I don't mean to scare you, but I think you should research it. Pudental Nerve Entrapment is often misdiagnosed, because it's extremely rare. However, some of the symptoms, such as severe genital pain, the absence of urgency/frequency, and a slow onset of symptoms... well, it seems as if it could be a potential differential diagnosis. Do you have pain when you are sitting, as well as when you are lying down? One article regarding PNE can be found here: http://www.ic-network.com/handbook/selfhelp0103.html

Anyway, if you do have IC, you should still have hope. I know it's very hard, I have wanted to just disappear sometimes, and I don't even have an IC diagnosis or pain as severe as yours! I think it's great that you have come to the ICN. People here have really helped me. I think you will also find a lot of support and help here :)

[poetgirl]

Hi Brian,

I'm sorry to hear you've had such a horrible time with all of this. I know the idea of doing the instillations sounds initially pretty scary, but as Donna points out, many people with IC have been helped by them when taking drugs orally did not do the trick. I've only had one instillation and it did help, but I've also had a lot of success with Elmiron, Detrol LA and Elavil so I didn't continue with having instillations done once my symptoms began to abate. I would urge you to try anything and everything (within reason, of course) to see what works to relieve the pain and pressure you're experiencing. One of my doctors told me that treating these kinds of conditions is like practicing voodoo -- you just never quite know what is going to work and what isn't.

By the way, just because your bladder may not present with the "hallmark" signs of IC (usually Hunner's ulcers or pinpoint bleeding upon distention) doesn't mean you don't have IC. My bladder did not present with those signs, and yet I still have IC.

I'm glad to hear that your family and friends are supportive. I think it is hard for most people to really understand what having this illness (and other related ones, like many of us do) is like. But if they care about you and are there when you need them, that's still a blessing. :)

Hang in there and I hope you start feeling better soon!

[Debgail]

((((Brian))) my heart goes out to you! It seems that many of us have had really bad experiences with Dr.s or getting diagnosed...but EVENTUALLY I PROMISE you will get a regime that will work for you. I hear the desperation in your post..and I totally understand. I too...MANY times have felt like " How the h*ll am I going to live with this the rest of my life!" Not that I would "check out" so to speak..it just gets so exasperating when you have pain 24/7 with no relief. You HAVE to have some relief of your pain, and your whole outlook on ic will change. There really is living with ic....you just have to be treated properly and I am so sorry that you havent been. I agree, I would check out if you could see Dr. Moldwin. Just reading his book you can hear the compassion and knowledge that man has.

I wanted to tell you that in a nutshell, I have bad ic...at least 5 years living on elavil and atarax alone for 4 years....having daily pain, pressure and swelling after sex that left me in pain for days too. I know the emotional link to ic and sex ffor a woman, but I am sure it is even harder for men. It will get better I am sure as you find all the treatments that work for you.
Back to my history...only since Feb of this year(due to insurance) after 5 years of hell did I see a good urologist who did my first hydro ...yep pinpoint bleeding, 60 polyps removed,trigone muscle inflamation and severe urethral stricture. I started on elmiron in March and although the hydro helped my frequency...did nothing for the pain. Still I sit 24/7 pain and I am crying to the urologist who does NOT give pain meds....Do something please!

HERE'S THE GOOD NEWS: After having in office urethral dilitations as a child and being TERRIFIED!!!!!!! OF CATHETERS..... I figured it cannot be much worse than I have been feeling and pushed my uro for and instill. I wont lie and say it was painless...I have had 2 now and the second one was easier....
I HAVE HAD NO PAIN FOR 1 WEEK AFTER EACH INSTILL!!!!!!!!!!!

So the Dr taught me how to do them myself yesterday....so next week I will try it alone...because 1 week of no pain means 1 week of sanity and happiness....well worth it to me for the pain of the cath. BTW...my instills are heparin and 6 opened elmiron caps mixed in it. I cannot tell you how soothing it is to my bladder. So hon, please dont be too afraid of trying an instill because it just may help you soo much...worth a try. I know I was so nervous both times that my bp was 139/78!!! High for me normal 90/70!!! But I got thru it and I am glad I did...now I know how helpful instills can be.

I just wanted you to know that I care and if theres anything I can do feel free to pm me. I am so glad youcame to the icn....lot of info and good caring people here.

Take good care, Debbie

[ScottR]

Brian,

Keep focussed on the big picture ie. getting well.

After a long darkness there is always a dawn. When the darkness grows darker and darker the dawn draws closer and closer.

Be well my friend.

ScottR