post-prostatectomy impotence

dcs1
dcs1 Member Posts: 9
edited March 2014 in Prostate Cancer #1
I'm looking for a discussion group with frank, forthright focus on sexual function and capacity after prostatectomy. I've found info very hard to find on how to manage & improve impotence. Partner and I are frustrated with our ability to achieve orgasm but we find that the impotence itself is a drain, and that Viagra and pump have been of little help so far.

Comments

  • 2375dgg
    2375dgg Member Posts: 29
    That`s why so many people are choosing brachytherapy instead of prostatectomy if they have Gleason scores below 7, PSA`s less than 10, and bone scan revealing that cancer has not escaped the prostate. You are dealing with one of the 2 dark secrets that urologists do not tell PCa patients about and that is the high rate of impotence and incontince of RP. You may wish to connect with the urology.com site to get some suggestions for help from their news articles. Dennis
  • meadc
    meadc Member Posts: 25
    I had the same problem. My Doctor give me Viagra and it didn't work at all! I am useing the injections, this has worked. Getting use to giving your self injections in the penis is hard at first,but I'm ok with it now. It is expensive but I think it is worth it. Erections last about 1 1/2 hours, and should not last more that 3 hours. If you want more info, you can email me at cats_03@msn.com
  • dcs1
    dcs1 Member Posts: 9
    2375dgg said:

    That`s why so many people are choosing brachytherapy instead of prostatectomy if they have Gleason scores below 7, PSA`s less than 10, and bone scan revealing that cancer has not escaped the prostate. You are dealing with one of the 2 dark secrets that urologists do not tell PCa patients about and that is the high rate of impotence and incontince of RP. You may wish to connect with the urology.com site to get some suggestions for help from their news articles. Dennis

    Thanks, will try urology.com. In my (youthful) case, RP was the treatment of choice because of need for long-term survival, but now we need to access best management ideas for sexual function rehab, and you're right that the surgeon -- having "done his job" -- is not the best source of info now.
  • dcs1
    dcs1 Member Posts: 9
    meadc said:

    I had the same problem. My Doctor give me Viagra and it didn't work at all! I am useing the injections, this has worked. Getting use to giving your self injections in the penis is hard at first,but I'm ok with it now. It is expensive but I think it is worth it. Erections last about 1 1/2 hours, and should not last more that 3 hours. If you want more info, you can email me at cats_03@msn.com

    Many thanks for reply. Will e-mail, but also seeeking further contacts for discussion via this or other sites. Men & drs. just don't talk about this. At 59, only 2 months post-op, am still looking for non-injection, non-invasive rehab techniques to foster earliest return to pre-op vigor. Viagra does improve erections, but not (yet) completely and dose has to be 100-150 so far. Viagra plus pump so far is the best combination, but we've had trouble learning how to coordinate using an extender-ring plus pump plus Viagra and still retain any semblance of spontaneity
  • dcs1
    dcs1 Member Posts: 9
    2375dgg said:

    That`s why so many people are choosing brachytherapy instead of prostatectomy if they have Gleason scores below 7, PSA`s less than 10, and bone scan revealing that cancer has not escaped the prostate. You are dealing with one of the 2 dark secrets that urologists do not tell PCa patients about and that is the high rate of impotence and incontince of RP. You may wish to connect with the urology.com site to get some suggestions for help from their news articles. Dennis

    Dennis--
    Tried urology.com a couple of times, unable get page to open. Fortunately, incontinence is not a problem. We think that perhaps we're being impatient only 3 months post-op, but it seems that no one is frank about the impotence situation. Any thoughts about where to talk about this for management suggestions and consensual validation? Dan
  • 2375dgg
    2375dgg Member Posts: 29
    A source if information is: http://UroHealth.org You will need to register. Dennis
  • dcs1
    dcs1 Member Posts: 9
    2375dgg said:

    A source if information is: http://UroHealth.org You will need to register. Dennis

    Will try. Many thanks, once again. Dan
  • 2375dgg
    2375dgg Member Posts: 29
    There is a lot of discussion about these items on the oncology.com prostate cancer board, why not check in there also. Dennis
  • dcs1
    dcs1 Member Posts: 9
    2375dgg said:

    There is a lot of discussion about these items on the oncology.com prostate cancer board, why not check in there also. Dennis

    Sounds good to me, thanks. Will check. I had a supportive conversation with a member of my surgeon's support roster of former patients: age 45, one neurovascular bundle preserved, and he was finally able to have penetrative intercourse with his wife at 9 months postop. I'm at 3 months and just starting to achieve some small amount of turgidity. Pump seems to be as much or more help right now than Viagra is. Dan
  • philmar
    philmar Member Posts: 1
    Where can I look to find a pump?
  • meadc
    meadc Member Posts: 25
    philmar said:

    Where can I look to find a pump?

    Go to: www.eredtiledisfunction.com
  • meadc
    meadc Member Posts: 25
    philmar said:

    Where can I look to find a pump?

    Sory I got it wrong: It's www.erectiledisfunction.net
  • dcs1
    dcs1 Member Posts: 9
    philmar said:

    Where can I look to find a pump?

    yahoo.com -- health -- general shopping -- sex -- penis enhancement.com (is where I got mine). I think that's the linkage sequence, or something close to it. If you try and can't get through, email me at Drdschuman@msn.com. You'll find a bewildering, awesome number of "sex toy" "shops" at the penultimate site. Don't get wierded-out by it. You just want the pump. I got the $49.95 trigger-squeeze model, but I suspect that the $29.95 bulb-squeeze model is just as good. It takes some getting used to, but it does work. Unfortunately, it's one of those very helpful things your surgeon never told you. You'll also need an "extender ring". There are lots of different models besides the one that comes with the pump (which I found not effective at all). You'll have to buy several to see which one works for you. They all fit around the base of the penis and scrotum, not ahead of the scrotum (I think). Once you see how they're constructed, you'll be able to make one yourself for a few cents at a crafts store. Good luck. Dan
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  • PayneOrtho61
    PayneOrtho61 Member Posts: 16 Member

    I am not new to this group, had RP coming up on 4 years ago this Dec 17th. Surgically speaking, I had a great outcome, free of cancer and continent. However, I have been miserable with ED. I have tried meds with little to no success, and get dyspepsia from all formulations of ED meds. I tried injection therapy and have had two episodes of priapism, which I feel has contributed to my ED. My urologist claims there is nothing more they can do except prosthetics. My wife is totally against surgical intervention, so I have looked into shockwave therapy. I have been invited to participate in a shockwave therapy study, but my wife is very concerned that the therapy is untested and risky. I feel like I have little to risk, given the situation I find myself in. I welcome any and all recommendations. Brian

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited December 17 #17

    I am sorry you find yourself in this situation.

    Has your testosterone recovered to a level appropriate for your age?

  • JackWest
    JackWest Member Posts: 5 Member

    My outcome is also favorable, however the ED portion is a learning curve. Any advice on it and also dealing with urinary functional changes are most welcome. Thanks.