Living with Interstitial Cystitis

I started having problems after my second bladder surgery for incontinence. I went back to my urologist and he became very defensive when I tried to explain my symptoms to him. He said “You were having bladder spasms before you had surgery, this is not my fault”.

Of course, that pretty much ended my relationship with him. I asked my gyn, he really didn’t understand what was going on. Went to another uro, he wanted to do another surgery for incontinence and give me a drug for the spasms. I did not want another surgery.

The symptoms came and went. When we traveled and pull our large RV, at the end of the day I was miserable, the cramping was so bad we almost went to the ER several times on the way home. Long days on my feet at the hospital would start the cramping and the vaginal burning. I would go places with my husband and I would have to stop and rest while he did the rest of the activity.

I went to the doctor several times a year and thought I had a bladder infection but no bacteria in my urine. It dawned on me one day(a gift from God) that the soap if I got it in my perineal area seemed to make the irritation worse. I stopped using soap down there and the burning stopped. Now I only have about three episodes a year when I think I have a UTI

I went to my gyn because I needed vaginal repair and a rectocyle repair. He wanted me to see an old colleague who is a urogyn. Said I really needed to deal with my urine leakage. The urogyn diagnosed me with IC

My question is, right now, I am and have been other than the occasional think I have a bladder infection, pain free. Should I take the Elmiron he wants me to take and do the physical therapy? Has anyone had success with this regimen? Please help me, this doctor is no warm fuzzy and is not someone who discusses a program with you. You just do what he says or he gets irritated. This is hard for me. I am a nurse, I think this drug therapy might be bad for me for other medical reasons. Any comments?

Thanks, Pat