Posted 8/15/2013 9:57 PM (GMT -7)
Hi...I usually hang out in the fibromyalgia forum, but I also have interstitial cystitis and have no one to talk to about it, so I read this forum. I sure hope you don't have IC. Does anyone on here know of any good IC forums that aren't so complicated? I've tried one or two but all the treatments they talk about are way above my head.
I was diagnosed with IC in 2011 and the pain is horrible. I have been trying to manage it by diet because the only urologist I have been to has the bedside manner of a frog and I refuse to go back to her.
My bladder and uterus and one ovary prolapsed when I was 29. My uterus was outside of my body and so I had a vaginal hysterectomy and one ovary was taken out. My bladder was also fixed (this was in 1986). Starting along about 1992 or 1993, I started having problems with urinary frequency, urgency, and pain. When we traveled and stopped at a convenience store, I would go to the bathroom as soon as we got there and right before we left, and I could have gone 3-4 more times while we were there. It was a miserable experience. I had other medical problems, so they took the front burner and after I got some of them sorted out, I finally went to a urologist and was diagnosed. I didn't think it was my bladder causing it because my OBGYN always said my bladder suspension looked okay when I had PAP smears done. Truthfully, I thought it was the fat on my stomach causing me to want to pee more and so I didn't take it that seriously.
When she diagnosed me with IC, she gave me a pamphlet and told me to come back 5 more times to get medicine put into my bladder. That's it, nothing else. She left the room. I never saw her again unless it was as I was leaving the office. When I went back for medicine instillations, the nurse did them and asked me my pain level. They never explained anything. I'm hoping to find another doctor when I can afford the co-pays and gas money for the 4-hour round trip x probably 6 weekly instillations of medicine. (The urologist I saw doesn't allow her patients to instill their own medication.) And I also went to an OBGYN who said I DID need my bladder suspended again, but I'm not going to do that anytime soon because I'm afraid it will make the IC worse and I'll have to find a doctor who doesn't use mesh.
Hope you find out something soon and get treated properly.