Living with Interstitial Cystitis

I was finally diagnosed with IC 6-9 months ago after dealing with the symtoms for the last 2 years. I went to Dr after Dr who poked and prodded from every end each with their own explination but no relief from anything. In the end I was so frustrated because you know that they are looking at you like you are crazy or it is all in your head, but the pain and misery is real. I finally seem to have found a answer between my gynecologist and urologist. Last week I had a cystoscopy and laparascopy both done at the same time which confirmed their suspected IC and also Endometriosis which commenly goes hand in hand with IC. They also found a very small bladder tumor, which threw my urologist for a loop. He says I am his youngest patient he has ever found one in by 10 years. The good news is that it returned completely benign, but it was caused from the inflammation in my bladder from the IC His removing it won’t impoved any of my symptoms or problems which is disappointing.

At 25 I am engaged to be married, fixing up a house. This is supposed to be the best years of my life. I have been waiting for it all to fall into place and start the family I have been waiting so long for. Now instead my world is swirling out of control, My fertility is threatened by the endometriosis and there aren’t many options for the pelvic pain that won’t threated my fertility any further. I am in constant discomfot and pain with the IC, I feel like I have to cross my legs all the time. My fiance is constantly picking, making fun at my always having to find a restroom. I know’s he’s trying to make light of it for my sake but it only frustrates me more. He doesn’t understand all the medical stuff, and he doesn’t like anything to do with drs offices and hospitals. All he gets is I feel sick all the time, and that I never want to have sex anymore. He doesn’t understand the pain I feel when we have intercourse he just thinks I use it as an excuse. It is putting a strain on our relationship and I feel as though I am going through all this alone.

The Drs are still playing with different doses of Amitriptyline and Urisure for the IC- (which makes your pee blue), trying to find the right combo to take the pain away and make life comfortable. Different Birth Control pills to help with the endometriosis To make things worse, I don’t work in the kind of job that allows me to run to the bathroom every five minutes, so I spend all day in this discomfort with my legs crossed which was how I spent most of my Christmas holiday too. I feel very depressed and have started having anxiety attacks, which I have never had a problem before, I feel very frustrated like it is all falling apart around me and I can do nothing to stop it. I hope they find a cure soon.