Debbie
Monday, May 14, 2007

Interstital Cystitis

I have interstitial cystitis and I am so tired of the medical community not properly treating this illness.  I am sharing my story and I hope more people share their story to expose this illness.

I was in my twenties when I started having a lot of bladder infections and then I would go to the Urologist and he would tell me it wasn't a real bladder infection but it was a low grade infection because my test results were negative. This went on for years and I remember having this awful pain and pressure in my bladder, but I was able to cope with the pain. Then after I had my daughter I seem to go in remission for awhile and then in my thirties it started up again and it started getting worse. I went from doctor to doctor with a different diagnosis and I even had a hysterectomy because they thought that I had endometriosis. I thought that I was finally going to be out of pain and then shortly after, the pain started back.

By the time I was in my forties I was starting to have "flare ups" that would result in bed rest for a week or so. The pain became constant and I was no longer able to perform my job. I loved my job and I use to fly all over the country, so no one can tell me I didn't want to work. As a matter of fact, I am so lucky that I can now do my job from home, thanks to some wonderful people that I work with.

I have been home for almost 5 years, at times I considered suicide because the pain was so bad and I couldn't take it anymore. Sometimes it feels like someone is cutting my bladder with glass, and I get so inflamed that I can hardly walk. I was lucky enough to have a wonderful Urologist who is not afraid to treat my pain. I also went to a pain clinic that I really didn't like but then I found a great one thanks to the Interstitial Cystitis Association (ICA). They adjusted my pain medicine and I do have some quality of life now. I still have terrible flare ups and I end up in the hospital on a morphine pump for short periods of time but at least I don't want to end my life.

What amazes me is the lack of support for this illness; I read too many stories where women can't get pain medicine. That is unacceptable in this day and age. I am so sick of reading that they think someone needs to see a psychiatrist. What they need is a doctor who knows how to treat their pain. If a doctor suspects drug abuse, that is one thing; but, if there is no evidence of drug abuse, how dare the medical community turn their backs on patients. I wish they would get this illness so they would know how we feel. Please expose this problem so more people don't have to end their lives. I recently read where Doctor Kevorkian's eighth assisted suicide was an IC patient that was so upsetting to me.