Vagina after radical cystectomy

Hello Mamou. Sorry I can't help with your concerns. Just to say no need to apologise for anything. We all go through intimate procedures and so no need to try and skirt around the facts. I hope someone here can help. Best wishes.

Thanks Rily :-)

Hi,I wish I had been given more information about this.All my surgeon said was that the vagina would be halved and that might make sex painful.I never saw my partner post op as I was recovering and he was shielding in the pandemic.Now we are meeting more it would be nice to resume some level of intimacy.It certainly feels very different internally post cystectomy.It feels hard and narrow.Love Jane x

Seems to me that surgeons need to do better in terms of advising male and female patients, eg directing them to specialist services which do exist at least in some places, to learn to deal with these unavoidable consequences better.

Anybody know how to ask that this be put into national medical training? Our old GP [yes the Serbian lady] said that a healthy sex life is part of being healthy and happy and she would do whatever she could to help. And did.

Denby

I think more information on what is normal internally after cystectomy and how this surgery can affect a physical relationship would be helpful.It’s not the easiest subject to talk about.Jane x

I think I must have been very fortunate with my hosp, with a brilliant surgeon & an acknowledgement that there might be issues. Their website (developed after my op) made this clear & encouraged patients to speak to surgeon or CNS. Do you have a specialist nurse assigned to you? They would be the person to ask. I know it can be a difficult topic to talk about, but once you get started, you'll find they take it perfectly normally. 

It is a shame that there are so many areas of healthy life that don't get fully addressed in medic training. There's just so much to cram in, they can only skate over the surface of many things. 

Thanks Denby for your comment :-). Being 64, I guess the medical team didn't think it was that important. It is not just about sex really, it is important for us to understand  and visualize how our body has changed and not be left wondering if things are ok or not by googling...

Yes, absolutely :-)

I actually contacted the specialised nurse I had when in hospital, and she just said it was normal... I feel a bit let down by the medical staff. It was ok when in hospital, but after that, I feel I just have to figure out things by myself, and I end up worrying about things, like pain sometimes in my belly. Just having a stoma nurse that you see occasionally and a GP that's not always the same and only contact you by phone is not really enough. There is no one to ask questions...

I felt the same.I had good care in hospital.When I came home I had weekly phone calls from the recovery team nurses there.My specialist nurse is pleasant but I’ve only contacted her once.The health centre has been the most disappointing.I wish I had complained at the time but I felt too ill.I was so thankful to join this group as I didn’t feel so alone with it all.love Jane x