Living with Interstitial Cystitis

I am 24 years old and was diagnosed with IC at the age of 19 (although I have had problems with bladder pain for as far back as my mremory reaches, at least as young as six) Receiveng an IC diagnosis was the must frustrating thing I have ever been through. I saw countless Gynos and Uros before finding a doctor who understood what I was going through. For a long time I felt like I was crazy or making a big deal out of nothing. Over the years I have developed other complication associated with IC like IBS and Reflux. I feel like every time I go to the doctor I am going to be diagnosed with something else. i am always exausted. Did I mention that I also have OSA? Some days I feel like a 90 year old trapped in a 24 year old body. Somedays I feel like if i had cancer or something like that people would at least understand that i was sick. It hard to feel horrible most days, yet still look young, vibrantt, and healthy. I don’t wish for it by any means, but somedays I think it would be easier if I looked sick. at least then people would not treat me like I was crazy. The only period of time which gave me any relief from my symptoms was after the first trimester of my pregnancy. I experienced a remisssion period until my son was a/b six months old. He is three now and I am back to having flare ups on a regular basis. Sure sometimes the pain is almost intolerable, and the idea of missing out on activities because of the lack of a bathroom near by is frustrating, but the hardest thing for me to swallow is the intimacy problems associated with IC. My biggest trigger of a flare up is any type of sexual activity at all. After intercourse, I may hurt for a month or more. which can limit personal time with my husband to only a few times a year. I think if we were older I may be able to deal with this a little better, but being so young and only being married for three years it is very difficult. I also find this the hardest aspect to talk about with my doctors. I am lucky to have a very understanding and supportive husband, but that only eases my mind a litle. There is an ever present voice in my head saying, he will want to find someone who can be a “whole” wife and meet all of his need. There is also the constant guilt because I feel like it is so unfair to him. I had IC when we met and he knew what he was getting himself into, but my flare ups where not as bad back then and the intimacy issures were no where near as severe as they are now. I just hope that ther is a light at the end of the tunnel. I know that I should be grateful because I am still able to work (becacue i have a very understanding employeer who doesn’t have a problem when I have to miss work), I am back in school working on my degree (onilne only, b/c
I could not sit through a class without having to excuse myself several times), and i have a beautif son and a loving husband but there are still days when I think why me? I am working on keeping my head up and being thinkful for all of my blessings.