Living with Interstitial Cystitis

well let’s see, I’m 30 years old, I was diagnosed with this nightmere of a disease 4 years ago. I, much like most of you, have an extreamly high pain talerance, which I attribute to having suffered with galbladder disease for 3 years before the finally listened to me and did an ultrasound, I was 21 when I had that surgury.

Needless to say I had a good 5 years of a “normal” life before I was hit with this. It has been a struggle no doubt, but I really tried to maintain a drug free treament plan. I dramatically changed my diet, which has been a challenge but my overall health has been fantastic with the exception of this horrible disease. Barely ever got a cold.. That part has been nice. And also spent the past 2 years getting Acupunture treatments. Things were going okay. Still found it hard to go out, spent a lot of time alone because I wasn’t up for socializing. Tried to keep it all hidden from people at work and my friends, saying “well when you drink 2L of water a day, your going to use the bathroom ALOT” trying to hide any sort of problem, which I am sure I don’t need to tell the people reading this, is impossible.

Things have declined dramatically for me. While on stage (as part of my job) I was in such intense pain. Pain I have never ever experienced and hope to god none of you ever do. I couldn’t walk, I couldn’t move, I managed to get down the stairs and I just collapsed into a mess of tortured tears and was out of town with no doctor to go to. Then the following 2 weeks were just as bad if not worse (if that’s even possible) so I went to my doctor and said “I don’t care if it’s heroine! You have to stop this. Pain!” I cried and said “I give up, I give up.” I requested that he give me something that will not make me all loopy, I run a very busy business and can’t afford to not be on the ball. So…

Now I’m on buscopan when needed, and I take tramscet every 4-5 hours. The doses are set at 2 of each every 4-6, but I try to keep myself at 1 tramscet, and if it’s not quite cutting it I’ll take 1 buscopan 3 hours later and alternate. I hate it, I hate that this.. Thing has turned me into someone I’m not. I want to be able to go out, take road trips, just have fun with out a constant pain! It’s always there. I just want my life back.

I’m getting married next week and to be honest the thought of my spouse having to “take care” of me at such a young age (he’s 35) is just depressing. We haven’t slept in the same room for almost a year, mostly because I find sleeping in my office more comfortable as I can kinda sleep sitting upright, and I don’t wake him up with my many trips to the bathroom. So really guys, this disease gets the better of you at most times, I try so hard to to live in a world of self putty but it’s really really hard!

I use to read all these forums and feel so lucky that I wasn’t afflicted to the extream as some people were and that controlling my diet was all I needed. That has changed, and depression has been knocking at my door, I just know someone out there somewhere will find an answer, I just know they will! Someone HAS to, this disease is horrible, and cruel. I am at this point willing to try anything to not be in pain, and willing to do anything in fear of that pain I had before the drugs!!

Anyway, just one more voice hoping for a cure. God bless all of you, and even in the worst times know your not alone and you have a world of people that DO understand.