Interstitial Cystitis

[livingwith]

I started having severe pelvic pain a year ago. After a few months of different medications and scans, my gynecologist did a test in his office and said that I had IC. Went to the urologist who started me on Elmiron. No change. My pain is only once a month during my menstrual cycle. Now the gynecologist has done a laparoscopy looking for endometriosis but found nothing. He now wants to remove my uterus. He said the IC diagnosis could have been a false positive. Do you all have symptoms all the t...Read the full article

[crw]

As I understand it, IC is a differential diagnosis, meaning that they eliminate other possibilities before saying you have IC. I understood from my urologist that there is no test for IC. I would do all kinds of things before having a hysterectomy, starting with having a second and third opinion.

[ead80]

I was just diagnosed this past summer, and my urologist did a cystoscopy to determine if it was IC. The procedure was not painful, although I've heard it can be. I went under general anesthetic for the procedure, and it only took 15 minutes or so. The procedure can also be therapeutic for the condition. I have not had symptoms for about 2 months, and I just started experiencing them again this week. The doctor gave me prescriptions for Elmiron, which is the only drug know to treat IC, apparently by coating the bladder and trying to cover the ulcerations or weak spots in the covering. I was also prescribed Elavil, which is meant to treat the pain associated with the condition. I haven't tried either drug yet, the Elmiron because it is very expensive, and the Elavil because it is a tricyclic anti-depressant, and I'm afraid of the side effects (drowsiness, mood changes,). I'm a full-time student, and don't want to be cloudy. I have found that over-the-counter AZO standard helps somewhat with the pain. It is a urinary tract analgesic, and the only bad thing about it is it turns your urine a really bright orange color--it stains! I hope this can help, I'm new to this condition myself and am also looking for support. I saw my urologist several times this summer, but now don't have insurance and can't afford to see him again. I'm in pharmacy school, so I have good resources at my disposal, as well.

[Tired of pain]

Thanks. I am having a bladder instillation this week just before my menstrual cycle should begin. The urologist said that if it is in fact IC as previously diagnosed, this should make the pain go away for this cycle. If not, then I will know the pain is uterine in origin. I did have a test in the gyn office early this year (I think it is called a potassium chloride sensitivity test) and it was positive. But since the pain is cyclic, I have been skeptical about those test results. The urologist says that IC symptoms can be very cyclic. It's very frustrating to not know for sure. Hopefully this month will shed some light. Thanks for your reply.