IC : Five Years On.

In december 2012 my Consultant suggested a procedure that would ease my IC pain. This pain comes and goes throughout the day but is normally worse first thing in the morning. It is also horrendous when hormones fluctuate and also if I eat or drink the wrong thing. So the thought of not having the daily pain really appealed to me!

There was a down side and that was being unable to void the bladder normally and needing to use catheters. I weighed this up carefully but not having pain was so tempting.

That was the 28th of Dec 2012. Two and a half months later I still have daily pain, in fact its worse than ever and I now take Tramadol (which has its own side effects) Things I could do before have now become difficult. Ive not, so far, actually used a bathroom outside my own house yet. I have to use a mirror when catheterising so I can see what Im doing and if the bathroom light is not bright I simply can not see!

Catheters come in individual sterilised packs. Once opened it must be inserted into the urethra without coming into contact with anything else, including any other part of that area of the body. So self catheterising without a mirror is really difficult. Ive often fumbled and had to discard the catheter in case I give myself an infection.

Infection rates are high when self catheterising, fortunately I have so far avoided any infection. I have to use a catheter up to six times a day…. this is my life.

My consultant did not inform me of the possibilities. He did not tell me that there was a chance it wouldnt work and that I may be worse off. That procedure was supposed to be the start of a new life for me. A life where I could do normal things, eat normal things drink normal things and most of all be pain free. It all seems like a distant dream now.

So where does this leave me? The Botox should wear off in time which means the bladder may start working again. But as it seems the bladder is even more sensitive post op will I ever get back to where I was? Funny how Id settle for that now instead of hoping for a pain free life. Id settle for just going back to the way I was two and a half months ago.  

I wish Id never agreed to it. The last two months have been hell and at times I feel Im running out of coping mechanisms. I cant work and in the process of applying for some kind of benefit (the name escapes me) where I will have an interview with ATOS. I wont get it, even my GP said I wouldnt. I dont look ill, I have no outward signs of the pain Im in. So how will I support my family?

I am very lucky to have two wonderful sons and a beautiful horse but my savings have run out and Im living on (financial) borrowed time. Will there ever be a cure for IC or is this my life for the forseable future……..

 

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4 thoughts on “IC : Five Years On.

  1. Is there an IC online help group? I’m sorry I can’t think of anything more useful than that 😦 but if there is a group out there with other IC sufferers you might find people with suggestions of things that worked for them

    • There is one in the UK but you have to pay to be a member. There is more info in the US, Im up to date on treatments etc so there is not much else I can do. Also tried alternative therapies with no improvement x

  2. It sounds pretty sh**e to me FM – wish there was something I could say to make you feel better – I think your doing amazing to cope with this a little un and a horse.

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