Has anyone had success with managing cronic IC. I have had it for 3 years and gone through all kinds of treatments and meds. So far no luck. I am in pain so any input will be appreciated.
Thanks in advance.

Yes, I've had some success with managing it, in more recent months...finally! I've had chronic IC since March or April of 2008, so about a year-and-a-half. Suddenly one day, I HAD to go to the bathroom, couldn't wait AT ALL! Went every 15-20 min. that day, and for several months after that, even if I hadn't drank very much. After 3 UTI tests (one of which came back positive), and others negative (of course, put sarcastically), I was FINALLY referred to a Urologist. Over the course of time, I tried several different meds, had surgery to hyperextend my bladder, which didn't work, I finally started taking Elmiron a couple of months ago. It's a medication that you take three times a day (start out taking gradually: the first week, you take it once a day; second week, two times a day, and the third week, three times a day. After that, take three times a day, either one hour before eating, or two hours after eating (must NOT be taken with meals! MUST be taken on an empty stomach, or will NOT be effective!). Elmiron is essentially a prescription drug that helps restore the lining of the bladder, which when you have IC, the bladder has some damage to it. It DOES help IMMENSELY to have GOOD INSURANCE to help pay for this expensive medicine. I only pay $30 for a monthly supply of 30 pills. If it weren't for my insurance, I would have to pay a lot more! I think about $137.00 or so for each refill! It can take about 3-6 months for this drug to take effect, for you to notice benefits. I started noticing positive side effects about three weeks ago, so it took me close to 2 months. Every person will be different though! Are you currently a patient to a Urologist? He can prescribe it, not sure about your regular doctor. Elmiron MUST also be taken with a FULL GLASS OF WATER, each time, which means that with this medicine, you're drinking three 8 oz. glasses of water a day. Also, in October of last year (2008), I started taking Trimethoprim, another prescription drug prescribed by my urologist. This medication took about two weeks to help me, and it sure did! Trimethoprim helps keep infection and pain away for sure! And boy do I remember how much burning pain I had down in the bladder area when for a short time I stopped taking it. I didn't think I needed to take it anymore since I was doing better, and didn't have the burning pain. Within a couple of weeks of not taking it anymore, I had the debilitating, INTENSE pain again, and it was NOT fun! There was one weekend that I spent mostly in bed, writhing in pain. I felt like my insides were ON FIRE!! Burning sensation for sure! Trimethoprim you take once a day WITH FOOD, and you MUST drink a FULL GLASS OF WATER with it for it to be most effective. I believe that Trimethoprim, without good insurance (I have Blue Cross, Blue Shield, which my school district fortunately pays for!), costs $30 per refill (I have 60 pills per refill). I only have to pay $15 though each time, due to insurance. A third medication that I take to help with this EXTREMELY ANNOYING and INCONVENIENT condition is called Vesicare, which my regular doctor prescribed to me about a month and half ago. Vesicare helps reduce the frequency and urgency of going to the bathroom (and believe me, for the last year-and-a-half, my mail has been sent to the bathroom, because that's where I've lived, going about 15 or more times per day, once every hour if available (and when you're an elementary teacher, not always available!), or sometimes every 40 minutes. Vesicare took about 3-4 weeks for it to help me, and it did! Instead of getting up EVERY NIGHT once or twice to use the bathroom, it might just occur once a week or less. I have gradually been able to sleep most of the night now without going. The first night I noticed a difference, it had SIX WHOLE HOURS! before I had to go again, instead of the usual 2-3 hours after going to bed...a miracle! I have also noticed more recently that I can wait to use the bathroom about 3-5 hours now!!!! Just a few days ago, I had TWO four-hour periods within a day for which I didn't have to go!! I still go more than the average person, but DEFINITELY a LOT less than I used to! Vesicare costs me $30 for each refill, 30 pills/bottle. Without insurance: A lot more/refill. Oh, and ask your doctors (you probably have more than one?) for samples before you try these medicines. Both my regular doctor and urologist gave me samples. I was given a 14-day supply of Vesicare samples, that each came with $25 off coupon! And my doctor also gave me a coupon with a COMPLETELY FREE refill, which I used the first time I had the prescription filled at Walgreen's, which I recommend, because once you've turned in your prescription forms there, you can refill them on the walgreen's website each time: www.walgreens.com. It's great! If there's a problem, they'll send you an e-mail, and then you can call them directly to fix it, or call your doctor. Also, have you tried the IC diet? I'm still learning about it. Just google it, and see what you find. It's kind of restrictive, but worth it, I'm sure. I'm going to get on this diet now. Some things that I remember about it: No: caffeinated beverages, chocolate, alcohol, etc. Have you considered getting surgery, the hyperextension? Surgery for which they extend the bladder so that's fuller in capacity. I had this done in December, and it helped for about a month, and then I returned back to the original state. Worth a shot though if you haven't tried it already. Talk to your urologist about it. An extreme surgery would be removal of the bladder, and then replace it with a new bladder made with other tissues from your bladder (the intestines, I believe). I have read that this surgery is not always successful though, because patients still have the IC symptoms. One of my new friends recently told me that she had IC a few years ago. She bought this helpful book about IC, that she let me borrow. It's called "The Interstitial Cystitis Survival Guide: Your Guide to the Latest Treatment Options and Coping Strategies," by Dr. Robert M. Moldwin. What all have you tried to help relieve symptoms for IC so far? Have any of them helped? I hope that all of this helps you! Please let me know what you do, and if they help! My pleasure to give you all of this information. Sincerely, another fellow chronic IC patient

Has anyone had success with managing cronic IC. I have had it for 3 years and gone through all kinds of treatments and meds. So far no luck. I am in pain so any input will be appreciated.
Thanks in advance.

I was diagnosed in 1993 with IC. That was 15 years ago. My IC has gradually got worse over the years. I have tried all sorts of things but it has slowly got worse. Have you tried a hydrodistention and DMSO treatments? Many times either these will help. Have you tried Elmiron? Have you tried Amitriptyline? Drink plenty of water?

There are some ideas. I am presently also having much problems urinating. I am going to be forced to do something that I do not want to do. Get a TURP to open up my urinary tract. This will most likely make thing much worse than they already are. Hopefully if it come to a TURP it doesn't. I have constant pain 24 hours a day. Taking pain medication. Avodart and Flomax. It is miserable! I hope that you are not as bad as I am.

I hope some of my ideas will help if you have not already used them. Hope thing start to turn out better for you. I know how you feel. There are not many men that have IC that will communicate with other males.