Hold on gals til March l2th for that neobladder

Anne i suppose we should ask Cynthia if we can take our own poll regarding women and cystectomies and sexual disfunction and then submit it to one of the major cancer facilities or to all the facilities???? I know my institution has really never done that kind of follow up....they call me once a year and ask me how i'm doing! Not too specific huh?
Pat

Pat,

Have finally managed to register and read the article. What an eye opener? Have to admit to occasional dryness but have been putting that down to impending menopause - maybe not? Overall I think I'm pretty fortunate having read the statistics quoted.
I think more studies should be done. Can we, as an organisation, influence this in any way?

Anne

There are some great women uro/surgeons here in the states...Elia Skinner at USC/Norris and Michele Donat at Memorial Sloan to name two.
Apparently nerve sparing is crucial for women also....hmmmmm..did anyone hear that from their surgeon? I didn't. I guess i could have asked but didn't think about it...somehow my mind was only on cancer......doh..
Anyway they are studying it but the studies are small and they probably don't give a rats a** about us women.
www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VJW-4JKHP5D-4&_user=10&_coverDate=04%2F30%2F2006&_rdoc=1&_fmt=high&_orig=article&_cdi=6105&_sort=v&_docanchor=&view=c&_ct=1629&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=d78f9b8caecaea2195c5c41bc2fc2685
Another thing that can affect desire...etc...is many of us are on serotonin type drugs for depression which as a side effect...yep...you guessed it...suppresses our desire and response.
If they can do nerve sparing in men with all the prostate entanglements they surely can figure out our plumbing ...if the tumor is not in the wrong place which then negates nerve sparing.
Here's a really good article from Medscape....go to middle of page for female dysfunction and there is another page to click on also at bottom.
www.medscape.com/viewarticle/521213_3
Pat

Lets hope this is positve for the future.
It might have saved my marraige although probably not.Like you say I wonder if we would be so 'mutilated' by this surgery if there were women urologists.Anything that improves things for women just starting out on this has to be good.
Lisa xx

Hi,

When it comes to all the factors that come into play in doing the neo for women - like the location, stage, grade, and surgeon skills - it makes for each of us being truly unique and less likely to have a "one uniform way fits all". I have heard of so many styles of neos as well - J pouch, W pouch etc. This one is called The Berliner. How can they really know they have isolated what nerves need to be spared with us to preserve sexual function, too?
My exprience did not allow us to attempt sex in between the RC and chemo -which started all of 6 weeks later so I have no way to know for sure if the surgery or the chemo changed everything. I am certain tho that the chemo changed tissues and moisture which I am still at a loss to correct. I feel like a perpetual virgin every second of penetration which has curbed my desire significantly.
Pat, do you know of any studies that address sexual issues for women that compare surgical, chemo and hysterectomy/oophraectomy effects? Somehow I hope that if I can figure out what I am specifically struggling with that I will have better odds to overcome it.
Hope it is not TMI, Holly
PS Anne - at first my hubby claimed he paid extra to get my virginity restored, but my reluctance to engage in activity has him chagrined LOL

Interesting! I assumed that everything would be alright for everybody post neobladder as my surgeon was keen to explain to my husband immediately after the op that I had been 'rebuilt'! Too much information my husband thought!
I understood that it depended exactly where the cut in the urethra was made as to whether you were left with hypercontinence. My surgeon said he tended to err on the side of caution as he felt it would be preferable to not be left incontinent.
just a thought but are there any female surgeons performing this op? Wonder how they would approach it?