I am a 23 year old with interstitial cystitis, a painful and debilitating disease that feels like a constant, incurable UTI. My symptoms started at the age of 5, but were very minor and not much of a nuisance. Occasionally I'd flare maybe once every 4 months for a few hours, but not enough to get me to go to the doctor. It was probably best that way. Back then things were way more brutal in regards to diagnosis methods, and few doctors believed children could get it.
I've been on all sorts of meds for this thing. Valium, Soma, Ditropan, Utira-C and permanent anti-biotics for the infections it's caused. I'm about to start on cyclosporine, the drug given to organ transplant patients which weaken the immune system, given the theory that my IC symptoms are caused by my immune system making too many cytokines -- the things that cause swelling and pain at an injury site. It's not an auto-immune disorder, it's an immune disorder since technically my body isn't attacking itself, just irritating itself to very painful proportions. Since IC usually starts after some trauma to the bladder -- mine was after a severe UTI -- it's a feasible theory and so far cyclosporine has had good results. Side effects I've heard of can be vomiting, or just feeling sickly.
My problem? This medicine requires monthly blood tests and I'm terrified of needles and doctors in general! So you can imagine how hard this disease has been for me. But if this medication makes it so I can live like a normal person again, finish school, and get a job then it'll be worth the needles. At 26 I get cut off from my stepfather's insurance and then I'm up the creek without a paddle if my symptoms remain ass uncontrolled as they are now.
