"Mitrofanoff Support has given me endless guidance and support leading up to my surgery, through my surgery and since then. They realistically informed me of what the operation could entail, which helped me make the right decision for myself. I can't thank the charity enough!"
"I think the website is a much needed support for people who have had a Mitrofanoff, or considering one.
I wish something like this was available before I had mine done in December 2009.
I am catching up on the posts...and learning a lot!"
"Well we had a great weekend in London. We did lots of things, but most importantly, we attended the Open Day. What a great success! We both thought it was really well organised, and very informative. Well worth the trip down South to attend!
We met lots of lovely people, all facing similar problems, and grateful to have a forum to share them on.
The information and talks provided were so valuable."
"I had my Mitrofanoff along with a neo bladder done in May 2004 with numerous revision surgeries done over the years following.
I came across this site while searching for any information i could find on people who already had a Mitrofanoff, like myself. I was amazed at how little knowledge the professionals had on this procedure. I feel now that I have found it that I am no longer on my own."
"I WAS LOOKING TO FIND PEOPLE WHO HAD ALSO HAD MITROFANOFF OP PERFORMED AS EVEN THE NURSES LOOKING AFTER ME HAD NEVER SEEN ANYONE WITH THE OP."
"Huge thanks for sharing, supporting and making bladder issues more talked about. Xxxxxxxxxxxxxxxx"
“So glad something like this has finally come about. Mention the word mitrofanoff to someone who hasn't had it done and you're met with a blank expression!”
"Some months after I had the Mitrofanoff procedure, I had to go into hospital for more surgery not connected to the Mitrofanoff. This was a terrible experience as the nursing staff did not know what a Mitrofanoff was and did not know how to care for it. I was very scared and felt that I was the only one with this kind of Urinary Diversion. By chance I found Mitrofanoff Support. Through this Charity I have met lots of others with Mitrofanoff's and realise I am not alone and have gained alot more confidence. Thanks. Well done Mitrofanoff Support!"
"So many GPs district nurses and so forth have no clue as to what to do with someone who has had this done so i will say thank u on behalf of all who belong to the mittrofanoff group because if it wasnt for u we wouldnt have anyone so THANK YOU XX
