Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
I've had "IC" for about 10 years. This last two months have been the worst of my life. Constant flare-up, only a couple of days of relief. Nothing has ever helped to ease symptoms and my Dr has perscribed me hydromorphone, lyrica, percocet and tylenol 4 with codeine and medical marijuana all in the last couple of months to deal with the constant pain and discomfort. Nothing helps. I don't understand what is wrong with me. Cystoscopies show nothing wrong with my bladder. I can't take much more of this. If I had any kind of street drug connection I would probably take heroin. I'm not a drug user, I don't like taking them, I don't like how they make me feel - I don't enjoy being stoned (the fact that I've been perscribed all these fairly strong meds and am not hooked on any of them is an attestation to that fact...basically I try them for a week or so, they do nothing except make me a bit dopey and nauseous so I don't continue). But I am just so desperate now. I've tried pelvic floor therapy too (they said my pelvic floor is totally fine - not too tight or too loose) and it made me worse, tried the bladder instillations, it didn't do anything. Tried a few bladder coating meds (elmiron etc), no relief. I'm on a low acid diet (I eat very blandly due to GERD and stomach issues that I also have) and it does nothing. I'm so desperate. My urologist has said there is nothing more that he can do for me. My GP has said there are no more pain meds to try. I can't live like this. All I do is sit on the edge of my couch rocking back and forth waiting for the day to pass so I can take double the amount of sleeping pills I'm supposed to so I can get a couple of hours sleep. I'm just waiting for it to get so bad that I will kill myself. I don't see any other outcome.
Also, if you are located near a university with a medical school/teaching hospital, you may want to call and see if their urology department has an IC clinic. Most medical schools are involved with the latest treatments, diagnostic criteria and even clinical trials that may bring you some real relief..
I have it flares come and go. I don't know if that's what you referring to? If so , it is Awful. There us always hope for it to settle. I also had surgery. That helped tremendously.