I went to see a fellow sufferer's consultant (Dr. Y) for a second opinion on my case. He basically trashed everything my current consultant (Dr. X) said. I am now on his NHS list. It only took three weeks compared to 6 months from my old hospital referral to Dr X!
Dr. Y told me that an Indiana & Mitrofanoff IS possible, it's just a bit fiddly. This is because they have to undo everything from my first operation, so it takes great surgical skill to do so. (Perhaps my old consultant doesn't have the experience of this but you think he would have referred me to someone who does, instead of trying his best to force me into the Ileal Conduit!) Thankfully, Dr. Y specialises in bladder reconstructions.
Dr. Y also said not only IS it possible to remove the trigone and top part of urethra, it's also considered a STANDARD procedure with IC patients undergoing cystectomies. This is because the trigone and the upper part of the urethra seems to be a point of ongoing pain and discomfort for most patients.
He was also very informative. I should expect some leakage - should only be a few teaspoons full per day. The corrective post op surgery rate for this type of reconstruction is 20%. He said if the pain is caused by pressure within the pelvis as the bladder fills then I wouldn't be a candidate for a conversion. But as he noted my pain is lessened with having an indwelling catheter (before the inevitable infections begin), he thinks he should at least be able to improve upon my current pain levels with this type of surgery and at best all but cure it.
I stated that I'm not expecting a cure, just an improvement of my pain and therefore quality of life.
He still wants me to undergo the sacral nerve stimulation trial at my old hospital. Although he thinks my bladder pain should be improved after the conversion, he thinks it may be beneficial for my general pelvic pain (lower pelvis and groin), as it should hopefully stop the positive feedback loop of muscle tension.
I cannot pass urine without a catheter as my muscles cannot relax enough to relax the sphincter and pass urine normally.
Dr Y has penciled in for late November for the reconstruction. I wished I'd transferred to him years ago, but hindsight is a wonderful thing. I'll post again nearer the time when everything is confirmed.
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