Had my appointment yesterday. Consultant said only option is an Ileal Conduit. I said no.
I wanted a Mitrofanoff made, consultant said no.
He said that I need to stop focussing on having the trigone and top of urethra removed and thinking this is the problem. He also said that in any cystectomy, the trigone is usually left in as it is too difficult to remove. Yet again, he says I need to be flexible, regardless of him being totally inflexible and ignoring my wishes right from the start.
In the end, we came to a compromise of Sacral Nerve Therapy, to see if that works first.
I am getting a second opinion from a fellow sufferer's consultant who has removed the trigone, and converted a Neobladder to a Mitrofanoff. If I do end up needing a second round of surgery, it won't be with my current consultant.
