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  • Hold on gals til March l2th for that neobladder

    Posted by on February 5, 2009 at 1:33 am


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    replied 15 years, 5 months ago 4 Members · 14 Replies
  • 14 Replies
  • Guest
    February 8, 2009 at 6:36 pm

    Char…..i know that one rule of thumb is to completely empty the neo prior to plying your husband with liquor. Other than that i suspect poor neo is in such a state of shock maybe it needs to be plied with liquor?…Talk to it..let him/her know this behaviour is inacceptable :P ya think?

  • webs

    February 8, 2009 at 5:56 pm

    This might be TMI so don’t read if it will bug you.

    After the application of much alcohol to my husband I took advantage of him. All parts seem to be working, but did run into a problem. Won’t affect most of you, but seems like my incontinence problem is a problem. Was completely incontinent right after and am having problems being continent 2 days later. Will definately be discussing this with my doctor. Anybody have any insites?


  • Guest
    February 6, 2009 at 4:33 pm

    Hey girls – have we opened up a can of worms or what? We need to look into this further.
    I’m sure I read a something about a study looking at women’s satisfaction following RC but I don’t recall it dwelling on the specific issues we have raised in this thread.(Try this: http://www.annalssurgicaloncology.org/cgi/reprint/7/1/4.pdf)
    The point we need to remember is that – for all of us having a RC is potentially a life saving operation. So where does that leave us if we are likely to have such problems as discussed? I do remember reading about losing the vaginal wall following a cystectomy and being horrified. My Surgeon was quick to explain how he would go about ‘rebuilding’ it. I was definitely aware of things being ‘tighter’ to begin with but now I’m ok. (Well apart from the slight dryness but I need to follow that up and have not got around to it yet!)
    Maybe we need to draft an online questionnaire as so far people seem to be happy to share experiences. This willingness is what makes this site so fantastic! Keep sharing!

    More articles:
    http://www.journals.elsevierhealth.com/periodicals/euus/article/PIIS1570912405000310/fulltext (a bit gruesome!)

    http://cme.medscape.com/viewarticle/521213_4 (more like we have been discussing)

    http://www.ingentaconnect.com/content/bsc/jsm/2007/00000004/00000002/art00021 (more like we have been discussing)

  • pemquid

    February 6, 2009 at 4:08 pm

    Having not had a RC, I can’t comment on what some of you gals have experienced, but I did have a total hysterectomy (uterus and ovaries) back in 1995 (becasue of bad fibroids and heavy bleeding, not cancer). I’ve experienced some of the same things you report, due to the sudden “menopause” and anatomical changes. I did take estratest (estrogen with a small amount of testosterone)and that helped some symptoms, though not libido. I stopped taking it about 5 years ago, as I’d been on it for almost 10 years and had turned 60. So, now I just use topical estrogen cream. Have any of you tried that? Works for dryness, and I think some may absorb through the skin as well to give some systemic benefit. I’m fortunate to have a supportive and young-for-his age husband to whom I’ve been married for almost 37 years, so I really feel bad for those of you who have been hooked up to such jerks.

    Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
  • webs

    February 6, 2009 at 2:41 pm

    Holly you have that right he is a prize winning A$$.

    As for dysfunction you have to actually have relations to figure out if there is any dysfunction. 9 months out of surgery, almost 4 out of chemo, and he still won’t touch me. He has always had a very slow labido, but this is rediculous. I am sure most of it is emotional on his part. Oh well still working on it. Sorry for the TMI.

    They should also study the emotional, body image, and divorce rate as well as the physicle.


  • Guest
    February 6, 2009 at 3:16 am


    I do think a poll would be good – perhaps we could get some ideas from each other to deal with the issues unresolved. And secondly, maybe we could do something to shed light on the subject for research. Ohhhhh Cynnnthhhhiiiiaaaaa LOL

    And Lisa, I am so sorry your marriage has turned as it has. When I had breast cancer surgery – my hubby booked and just 10 days after the surgery. The path report wasn’t even back yet when he spent our savings on a new truck he hid for 3 months. Personally, I was glad I saw him for the swine he was when I did even tho his timing was pathetic. We had been married 7 years or so. Last winter he heard about me getting bladder cancer and he made contact with me…I thought it was to apologize, but I was wrong. He informed me that he felt I should return to him what I was awarded in the divorce upon my death. That is an A$$ for life. Holly

  • Guest
    February 5, 2009 at 9:11 pm

    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?

  • Guest
    February 5, 2009 at 8:09 pm


    Have finally managed to register and read the article. What an eye opener?:ohmy: 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?


  • Guest
    February 5, 2009 at 5:43 pm

    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.
    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.:woohoo: :woohoo: :woohoo: :woohoo:
    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.

  • Lisaloo

    February 5, 2009 at 2:20 pm

    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

  • Guest
    February 5, 2009 at 1:21 pm


    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

  • Guest
    February 5, 2009 at 9:32 am

    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?

  • Guest
    February 5, 2009 at 1:49 am

    I guess we’ll see…….but i’m glad somebody is finally thinking about it even if it was in Germany!!…….Relations? huh? whats that? can’t remember

  • Guest
    February 5, 2009 at 1:45 am

    Hi Pat :)

    Does this mean what I think it does? A neo that would not cost a woman her ability to have normal relations??? Personally, I wonder if it was the RC/neo surgery or if it was the chemo that has made that all but impossible. Holly

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