I have a long history of a IC and pelvic floor issues and I am in the AUA experimental stages and my qol sucks. I have 2 little girls and I can't do much. I have chronic pain, bladder spasms, blah,blah, blah, you have all had to deal with cancer and so your choices are limited. I am amazed at all of you but need some advice and general knowledge of IP. I am not a neo bladder candidate and I don' want a conduit. I have been dealing with this since I was a kid, I am 40. I want to run, do pilates, drop my baby weight etc etc. I want the whole damm thing out.....urethra, all of it.
So I am looking for peoples stories, experiences, complications. How often do you cath? FLush? Can you sleep through the night? Leak? stones? other issues like b 12 def?
How was it as a surgery? I hear it is a a very hard surgery with a big recovery, can someone attest to this?
I have a IC (interstitial cystitis) website I go to but they are leary to take out IC bladders b/c most women still have some pain. Right now we are mimicing a diversion with cathing 24/7 and other then urethral spasms I feel GOOD. RESTED. The real test is to get an s/p cath soon as my first one failed.
I appreciate any and all help, comments, anything.