Next stop - Treatment!

This has been a long and winding road a big Trial and error and is still not right!!!

Worst thing about this condition is that no matter what you try nothing seems to work, you can have good days or really bad days but in the end the exhaustion is the worst. It can be a long and sometimes lonely road as no one can really understand what you’re feeling everyday and some people don’t even care, but if you’re lucky enough you will have someone patient enough to deal with all the trials and tribulations and who will hold your hand when things do get really bad!

First line of treatment from the lovely irish consultant was a course of cimetidine 3 times a day and cystitat every fortnight and hydroxyzine at night. This meant every fortnight days off university to have a catheter inserted every couple of weeks. This disruption inevitably caused massive flare ups and usually caused another week wasted of being ill and chained to the toilet. University life literally went out of the window so I had to take a year out although I continued to try to work part time which was a struggle but that’s what provided me with my saving grace of private health care!! Cimetidine was not providing any saving grace, it was useless. However the hydroxyzine was providing some success in me getting nearly uninterrupted sleep. I had gone from waking 5 times or every hour in the night to only waking 1 or twice on a good day not at all!!!!

Cystitat was the main challenge, the invasive procedure caused a great disruption to my bladder and the flare ups were being triggered not only every 2 weeks for 2 weeks but also getting worse. Not only was I getting flare ups I was getting regular infections from the catheter which caused great confusion whether it was a flare up or an infection. However this started to settle and become routine, part of my daily life. I had to come to the realisation that this was going to be my life medicated and regular trips to the hospital...great just what you need at the age of 19.
Just as things were becoming routine and my whole medical history had been discussed and there was a safeness about the consultant that you were seeing, however the break up came ... my consultant was retiring I had to be transferred to a new one.

My new consultant was a colleague of my lovely irish consultant but without the attitude to make you feel comfortable. This was a private issue still uncomfortable discussing intimate details all over again at the age of 20. This relationship was not gelling like the previous one, but he discussed what mediation i had taken and what worked so we kept on the hydroxyzine and the cystitat but changed it to weekly visits he also changed the cimetidine to tolterdine (which didn’t do much good either).

The bad news about this arrangement is that i was back at uni, my last chance to complete my degree and keep on course becoming a barrister. Weekly visits meant that I was absent quite a lot. But something wasn’t working after numerous visits and infections and flare ups I realised Cystitat was not working. I needed to try something else. I had already increased my pain killer medication from codydramol to tramadol which makes it hard to concentrate on anything let alone lectures and essays. I got my work in on time below standard but it was completed but I had so much work to catch up on I had to succumb to the art of being self taught from textbooks!!

Anyway with my treatment not working I arranged another consultation with my doctor. He had some news, he was retiring... another break up !!! Just what I need however he did the best thing I could have needed he referred me to an IC expert in Crewe.

My first consultation I was petrified I didn’t know what to expect, however he was a lovely irish man who immediately empathised with my situation and seemed to completely understood my condition. However he wanted to do his own tests before he confirmed what condition I had. So he set up a urodynamics test and a cystoscopy all on the same day. I thought this would be nothing, and it would be quite harmless, cystoscopy I already knew what to expect. However I was not prepared for what came next!!!

The Urodynamics test involved sodium chloride into the bladder to see how much the bladder could take ... this was ok very uncomfortable but I could stand this. The next stage was potassium chloride (acid) into the bladder ... this I could not handle, the direct contact of acid into the bladder was like torture, I have never experienced pain like it!!! I could not move it finally eased with local anaesthetic put into the bladder to numb the pain. After that I went in to have the cystoscopy, I woke up with immense pain!!! I could not move I was yet again chained to the toilet doubled over in agony, I could not go but i needed to, I couldn’t move and I didn’t know what to do ... maximum dose of tramadol later still in agony I couldn’t see for the tears!! It was time for my mum to intervene, I finally got something to make the pain ease – Pethodine, I felt like I was on a cloud. That type of bliss I had not felt since forever. But this soon wore off when I was back at home and it was for my loving boyfriend to hold my hand whilst I was in the bath to try to ease the pain., a regular occurrence in our relationship. But breakthrough ... I had a second diagnosis, not only did I have IC i also had an over active bladder too.

After my second consultation with my consultant I was started on Elmiron which like cystitat lined the bladder but on a daily basis and was tablet form, much less invasive. I was also put on oxybutinin, which seemed to help my spasms. And when things got really bad I had tramadol and a hot bath with a hand to hold which provided much comfort in the hard times.
Well through all this I managed to make it to my final year, with not much improvement in my health however I was so used to the symptoms it was a usual routine. The end of November came and disaster struck ... I got my second kidney infection I was in hospital for 10 days. It was this time I realised the Elmiron was not working ... nothing was working desperate for some help I went to the consultant the day later to get some answers and maybe some help. Perseverance was all that was offered.

6 months later I graduated ... with a lesser degree than I wanted, along came disappointment, shame and frustration. But I got a place on the BVC where I could finally make up for lost opportunities and finally stay on track. However things still hadn’t settled from the kidney infection so I decided to take a year out and start work. I thought this would provide a distraction. 3 months in and I realise Elmiron was a waste of time nothing had changed and I wasn’t getting better.

I went back to the consultant and he prescribed gabapentin for the pain and we discussed the possibility of botox. I was either going to have it before the BVC or after. Unfortunately this was going to be on the NHS and there was a waiting list. The time came and I had already started the course in London, i felt like I finally was on track with everything and my life goals so I turned down the operation. Instead my GP increased my gabapentin for pain and I am to wait until july to have the procedure ... this is the final option that is less invasive than surgery which at the age of 24 is the best option. ... Fingers crossed this may work!!!!!!

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.

Where to Start??

Where to start ... well the beginning seems like a good place! I've started this blog to inform and to comfort all those people out there that are living with Interstitial Cystitis (a.k.a Painful Bladder Syndrome). I will begin with my own traumatic tale of life with IC and update regularly with tips, ideas or just general ramblings of how life is treating me. All your comments will be useful and any followers out there if you email me your own thoughts i would be happy to post them too. I just know that its a comfort to know that your not alone and there are other people out there who have the same or similar experiences.

Its been roughly ten years now that I first became aware of the condition, I was going through my teenage years, which we all know can be hard as it is, when I first started to get pain. After seeing the doctors, I sent off a sample (which came back blank) and was given ... you guessed it anti biotics!! This soon became a regular occurance to the extent where the doctor said to my parents that I was a teenager trying to waste their time and get off school!!

College soon came around and so did frequent trips to hospital, A Levels became a disaster, but there was still no explanation to the constant 'flares' of cystitis that I was getting, and a pattern was starting to form. 2 weeks of every month I would get like this and it would get worse with alcohol, this wasnt the best news to a student!! Time off was almost inevitable to the extent that I was off more than I went in, struggling to catch up was the worst and the looks and comments from the teachers didn't help. Some 'mystery illness' was looking bad on their statistics. College was a very confusing time with no answers to explain what was happening. But with help from my family who as dumbfounded as I was I managed to scrape through and get a place at university.

I started to study Law at university (not the best uni as my grades were not up to scratch) however I had managed to get in. Becoming a barrister is my main ambition in life and that was what I needed to focus on. However as my first year drew to a close my condition was worsening and I ended up in hospital with my first Kidney Infection. The urologist was curious as to how I managed to leave my cystitis for so long, but i explained that by now cystits was part of my daily symptoms so there was nothing out of the ordinary. It was only then did the doctors begin to investigate....