Interstitial Cystitis Advice

About 4 months ago I called my GP for an antibiotic to treat what I thought was a typical bladder infection (I usually have 3-4 /year). Called him again when I finished the med since I was not better. He called me in for a culture, which came back normal. Went to my Gyn, thinking maybe it was vaginal. Did another urine culture and it was normal. My Gyn sent me to a Urologist who did a 3rd culture, which as you know came back normal as well. After reading some horror stories on this website and others, I feel very fortunate to have gone to a Urologist that upon seeing a clear culture told me he needed to do a cystoscopy (and he also did a distention) to determine if I had IC. Not knowing anything about IC (and he didn't explain it) I told him I'd get back with him and for a couple of weeks the pain came and went and I thought it was on it's way out for good. But no. It came back and I scheduled the procedure. He said the distention was part of the treatment and still not knowing the seriousness of an IC diagnosis, was hoping he'd find the problem and fix it with the distention. When I awoke in the recovery room, he told me it was IC, gave me pictures of my bladder, along with a prescription for Elmiron. Well, I felt pretty good for about 3 days and didn't think I'd need the prescription. Thought I'd do a little research on the IC subject and did I ever get a shock reading words like "chronic" and "treatable." I'm not new to these terms, so I immediately knew I was in big trouble. Of course the pain returned & I filled my prescription.

About 15 years ago I was diagnosed with Hashimoto's (autoimmune of the thyroid) and 1 & 1/2 years ago was diagnosed with a rare autoimmune disease called Addison's (automimmune of the adrenals) where my body no longer produces the much needed cortisol hormone. For Addison's I take steriod therapy 3 times/day. About 1 month after the Addison's diagnosis, I started having severe skin hives all over my body and had to take excessive amounts of anti-histamines to keep them even bearable. My Allergist diagnosed that the hives were due to autoimmune situations within my body. I kept the chronic hives for over 1 year but incredibly since the cystoscopy, I have not had a single skin hive. Because of what I've studied so far about possible reasons for IC, I believe mine has something to do with either autoimmune tendencies or excessive amounts of histamine being released, or both.

I mainly feel as if I constantly have a bladder infection, my vaginal area feels raw, my stomach feels bloated, and my lower left back hurts. Even with these pains, I think my pain could be a lot worse by reading others' stories, so I feel blessed for that, but also fearful for the future that my time will come. I am in the grieving stage and still some of the denial stage as well. I am reading 2 of the books recommended from this site, which are WONDERFUL resources (thank you very much for recommendation). I have MANY questions, which I will post at the appropriate places. This is my story, different but very much the same as others. P.S. I am 49, married with 2 grown and married children. I work full-time at a stressful job and am very active with my church and neighborhood.

Gayle