It’s funny because I never thought I would write down my story but maybe it will help me. I am currently 25 and have been dealing with IC for about 6 years. As a child, I had some urinary problems and can remember quite clearly having to be catheterized at around 10. The doctor claimed that he had so much trouble with the catheter because I had a small urethral opening. Little did I know that the real reason was my severe pelvic floor disorder.

Fast word 8 years. I was in college hanging out with friends when I suddenly had violent pain in the lower part of my abdomen—enough so that my friends ran out to get me some pain medication. That one spasm began a six year struggle with IC and pelvic floor disorder. From 1997-2001 we went from doctor to doctor trying to find the cause of my pain, frequent urination and often times stalled urination. I was told that I probably had everything from torn abdominal muscles to ovarian cysts, to IBS, to endometriosis to kidney stones. I had multiple exploratory surgeries to find the cause, none of which were successful. I even had one doctor recommend that I see a psychiatrist. Little did he know, I already was… just to deal with the emotions being sick caused. But I knew I wasn’t crazy and this pain wasn’t in my head.

Finally I found urologist who diagnosed my IC. However, I wasn’t responding to the normal treatments. So this kind man (he really was one of the nicest doctors I have ever seen and that says a lot since I’ve seen innumerable doctors) sent me to an IC specialist. I have been working with the specialist ever since. I have tried most of the medications and treatments that everyone has, Elmiron, DSMO, Elavil, Diazepam, etc. I’ve had two hydrodistentions under anesthesia and a few in office. I’ve had my urethra stretched three times as well. For a while, I had been feeling a little better. However, this illness has come back and hit me like a tone of bricks and now my body seems to be exhibiting symptoms of other illnesses. I have numbness in my arms, hands, feet and legs and I am chronically exhausted.

I still work and try to lead a normal life. But it’s not easy. I think to myself that it could be much worse and I know in my heart that it really could. So I continue to take it one day at a time. Thanks for letting me get some of this off my chest. It’s hard to find people who really understand what IC does to your body and your life.

Best Wishes,

Jennifer B.