Interstitial cystitis - experiences?

[KDsMommy]

I suffer from what I thought were recurrent UTIs, but have recently discovered that most of the time they aren't actually true UTIs. My OB/gyn referred me to a urologist and he believes that I may have Interstitial cystitis marked by irritation/inflamation of the bladder. I frequently (every 1-2 months) get severe UTI-like symptoms that land me in the dr office or ER. I have a pretty high pain tolerance but the pain and burning I experience with these flare-ups can be downright excrutiating. The urologist has been surprised to find no bacterial growth in my urine cultures the last 2 times the flare ups have occurred, which leads him to believe it could be Interstitial cystitis. I'm going in for a scope procedure tomorrow so he can see inside my bladder and try to figure out what's going on.

If you have Interstitial cystitis, what has your experience been like? What treatments work for you? I just want to figure out what's happening with me so we can try to treat it, as the recurrent pain is really having a negative affect on my quality of life. When the pain begins, it is all-encompassing.

Thanks in advance!

[brittone2]

I have a family member who was diagnosed with this. I know she had to avoid carbonated drinks and a host of other foods. I am not sure if that is still the recommendation, but I believe it was a Duke affiliated doctor who made those recommendations to her. I am not sure if you've looked into eliminating some of those triggers initially to see if it helps.

I don't know how good the evidence is for it at this point in terms of research, but there are pelvic floor/women's health PTs who work with patients with IC. There are women's health PTs who aren't on this list, but it is a starting point. If you can't find one on the list and decide to pursue it, you can ask MDs, midwives, or call local outpatient PT practices and see if they have someone who does women's health as a substantial part of their caseload (not just a case here and there if possible).
http://www.womenshealthapta.org/find-a-physical-therapist/