Alice
First I have to say that Im a man so I can't really comment too much on the effects of this operation on a woman's physiology except to say that I have heard a lot of really positive stories about women who have been through it. There's a woman I know here in my town who I chat to occasionaly who has had her bladder removed and is now back at work doing, to my mind, a pretty strenuous job working with young children. There are also many women on the site who are going through or have gone through your circumstances.
Perhaps if you post to the womens section on this forum someone will be more helpful than me on those specifics such as how the vagina is affected. I do remember being pretty freaked out before my op though and, although it's not the same exactly, the list of giblets they take from a man during a cystectomy had me feeling pretty queasy. I read a lot of things like the material you quote and while it was useful it didn't really prepare me for how I would feel. And I don't mean it's a lot worse - in a lot of ways the surgery was nowhere near as bad as I was expecting. Sure there was some pain but a lot of the sensations were more like discomfort and the inconvenience of tubes and bags dangling off you all the time. Like everyone else I got quite undernourished too.
I had the same operation as Zachary - I haven't had quite as much hardware installed as him - but I'm working on it!
The weeks after my surgery, like everyone else (again), I felt understandably rough. But little by little I got stronger and around about the 2 month mark was beginning to feel a lot more normal. 8 months on I don't have much of a sensation of something having been taken away now. The wounds have healed. I get the odd twinge but really nothing to be concerned about. My days now are totally normal. My nights a bit damper but improving all the time.
In terms of relationships, Im lucky enough to be with a really understanding partner. If I wasn't I probably would have anxieties about the prospect of being loved again and having to broach the issues of my continence and the fact that my erectile function isn't quite what it used to be. But in my heart I'd like to believe that, ultimately, if you find the right person then it really shouldn't matter to them if you have an elephant's trunk grafted onto your forehead. And that my illness also serves to weed out the time wasters! I know sometimes it doesn't feel like that but if the situation was reversed I wouldn't give a rat's ass if the person I fancied had been through something like this. In many ways I would respect them more for having played so well with such a tough hand. The things that make the experiences of being with other people great in whatever capacity; friend, girlfriend, ships passing in the night, have not been diminished at all by my bladder cancer. My relationships with certain people have actually become a lot better.
Sexually, as I said above, it has made a difference to me. Mainly, my erectile function has suffered. But it is actually starting to get back to normal without meds. I have the meds but I'm kind of seeing what happens without them. My partner and I did have sex in the first two months or so after my op and it just felt a bit weird. I felt pretty delicate and, physiologically, a man can't ejaculate after a prostatectomy which just felt a bit wrong!
Things that I found useful before my surgery were speaking in the flesh to people of a similar age and the same gender who've already been through it. That made me see that there is a good life beyond cystectomy and a pretty normal one. Ask your docs if they can direct you to someone.
I can relate to your losing your sis from my own experience. My sister was 38 and died within 3 weeks of diagnosis. I felt she would have been rooting for me when I chose my cystectomy! Maybe you'll never have to make that choice but if you do it's a well-trodden path.
All the best
Tim
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