Diagnosis!!

My first step to a diagnosis was when I was 17, first day of college, brand new start within half an hour of being there I was in severe pain, I was taken to casulty 'great'!!! I was refered to a gynacologist who thought it would be best to do a laparoscopy - nothing was found, just left me with infected scars around my belly button. Nothing more was done until I was 19 and got taken to hospital for a kidney infection, this was the start of a long line of 'wonderful' relationships with urologists.

The consultant I was under at hospital found it very strange that I was having cystitis but never went to the doctor. I had a long discussion with him about my daily symptoms and the treatment by the GPs and he decided there and then he wanted to see me further to investigate what was happening, once I had recovered from the infection. Luckily I had BUPA healthcare from my part time job that I had struggled to maintain whilst studying. Bupa was a god send, otherwise I would have been stuck on some waiting list that would take forever to get anything solved.... but even with BUPA the ride was not always easy!

A few weeks after I came out of hospital I had an appointment the the consultant I had seen there, I was sooo nervous all sorts of thoughts running through my mind ... will he believe me... am I going crazy ... is it all in my head .... whats going to happen!!!! I was starting to panic. However as soon as I sat down in his office I was immediately put at ease, he was a lovely irish man who made it seem like he had all the time in the world for me and my situation. He then arranged for me to come back for some general tests ... just what I need more time off and more catching up to do with my studies, I was beginning to teach my self from books more than I was going into lectures ... it was not always successful either!!

Anyway I turned up for the outpatient appointment, I had another meeting with my consultant and he explained everything that was going to happen he could see I was very apprehensive. Just a few xrays he said but what came next turned into a nightmare. It was a gradual start some ultrasound tests and picture xrays were all fine then I had the IV dye x ray ... this made me feel very sick with an awful taste left in your mouth. By the end of the day I was exhausted and my IC was starting to play havoc as per usual. I went back to see the consultant and he told me that the results were normal ... i thought thats it he's going to think i'm making it up now!! but it was quite the opposite he had an idea of what could be wrong but it required an operation under general anaesthetic to stretch the bladder and look inside it with a camera ... a hydrodistention and cystoscopy.

Again more hospital visits and more time off. I could believe what was happening I felt so confused on one hand I was pleased that I might actually get this sorted but on the other I was struggling ... my daily life had become so distrupted and I was so behind at university I didnt have the energy to catch up. I kept thinking this last test will finally resolve the situation....

I went back into hopstial, an overnight visit this time .. general anaestetic was the best sleep ever but the after effects were awful, my blood pressure dropped I couldnt stand up and I was being sick ... not the nicest experience. I then went to the toilet ... the pain was so intense it brought tears to my eyes just even attempting to go. Then the urologist came to talk to me ... at last some answers I had a diagnosis the hydrodistension and cystoscopy showed tiny cuts and irritation to the bladder wall a classic sign of Interstitial Cystitis. I was like ... inter what??? ive never heard of this before! the doctor explained that the protective lining of the bladder wall is missing and it is like an open wound inside your bladder anythign that goes into it will irritate it and this is what is causing you pain.

I was full of relief ... at last I can get this sorted and go back to normal, get treatment and put it right. This relief lasted the whole of 5 minutes when the doctor then said bad news as noone knows what causes this deficiency there is no cure there is only medication to minimise and control the symtoms but they are not always successful. The only consolation was that I might grow out of it when i'm 50 when my hormones change ... great only 30 more years of agony. The urologist explained the treatment doesnt always work got to try and see how it goes ..... the trial and error then begins.