As some of you are aware from the message boards, I’ve not had a good time of it. The operation was a success in regards to removing the diseased bladder tissue (which was scarred, thick & ridged, with a 50ml capacity) and therefore the cause of the burning and stinging pain, like lemon juice on hundreds of cuts; but has caused other problems. I have very painful muscle spasms, intense pressure pain in my pelvis, and I still have pain on the bladder filling, although it is pressure pain rather than the stinging. I still have pelvic pain.
So in my case it seems the main problem is nerve damage. I have a very tight pelvic floor, as when I am in pain, everything tenses up. I can’t consciously relax it, I have to take Diazepan to help, and a hot bath helps too. My nerves seem to fire excessively, as the level of pain I experience is out of proportion to the cause. I’ve been reading up on this, but it’s quite complex.
My consultant has suggested injecting the trigone with Botox, but he had to apply for funding from the committee. I got an appointment in the post on Tuesday to say I have to attend a pre-op assessment, so I’m assuming the funding has gone through. Depending on the results of that he may also try sacral nerve therapy. He doesn’t want to do any more surgery until I’ve gone down this route first, which is logical, but when I am the one suffering every day, I just want them to take the top of the urethra and trigone and be done with it!
Of all the 10 people I’ve spoken to online, who’ve suffered IC, and then had a cystectomy and Neobladder reconstruction; 9 have had problems and are considering or have had it converted to a Mitrofanoff pouch or an Ileal Conduit. That is not to say that it might not work for you if you are considering this option, I’m no doctor, but you need to do your research, and make sure that your consultant knows your wishes. I wish I had been more forthright with mine, as I said repeatedly that I thought a Mitrofanoff would work better for me than a Neobladder, but he did what seemed logical as a doctor, which was to do the least drastic option first.
I am on Morphine and Diazepan daily now, but it is having less and less of an effect. I’ve become very depressed lately, although my GP increased my dose of Amitriptyline from 50mg to 150mg to help cope with the pain and the depression. I feel awful because the stress is taking its toll on my other half; he’s really tired all the time lately which is very unlike him. He usually has oodles of energy. We just want the nightmare to be over with. I want to be fit enough to go back to work. I want to be well enough to plan and enjoy my wedding (we've been together for over 11 years, we need to do it soon!) I’ve realised I’ve been off work for about a year now. I’ve been trying to make use of the time by doing some studying. Sometimes it distracts me from the pain a little, but most of the time it hurts too much to study, and the painkillers make it hard to concentrate on anything for long.
