Long standing incontinence and impotence

Scurrent
Scurrent Member Posts: 2
in Prostate Cancer #1

I was a 52 year old healthy individual and had a robotic prostatectomy in July of 2015, Gleason 6 PSA 24.  After the surgery, I was completely impotent and almost completely incontinent.  I have been through two years of pelvic floor physical therapy, Viagra, Cialis, Trimix for the ED, and Vesicare, Ditropan and Detrol for the incontinence.  I still have no erections at all, and am heavily incontinent, losing almost half a quart of urine daily.  I have no real urges, it simply leaks whenever I move, bend, laugh or even stand up.  

Here is the problem. Normal recommendations would be for the artificial sphincter or sling for the incontinence, and the implant for the ED.  I unfortunately had two bone marrow transplants for CML Leukemia, and the oncologist will not sign off on any implant for fear of provoking a graft v. host problem with rejection of my bone marrow. That would be fatal.  

Are there any options to deal with the impotence or incontinece that I might be missing?  I have been to several top urologists in the New York area who are not giving me any solutions due to the Leukemia complication.  Otherwise, I am incredibly healthy in all other respects.  Any solutions that might have been missed would be appreciated.  -  Steve

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #2
    Choices

    Hi,

    A few things come to mind, for your incontinece you could use an external penis clamp or a external catheter bag strapped to your leg.  For your ED you could try a vacuum pump that pulls blood into the Penis, put on like a condom. Just a couple of thoughts on external devices, not a lot of options that I am aware of.............

    Dave 3+4

  • Damp
    Damp Member Posts: 25 Member
    #3
    Here is what  I do, and have

    Here is what  I do, and have for a number of years.  My prostatectomy combined with the removal of a large diverticula was nearly 4 years ago.  Prior to my surgery, I had issues with bladder control.  When all this began, I started wearing pull ups when away from home.  As my incontinence worsened, I changed to tape on diapers.  That took some getting used to, but it has become a fairly easy form of management.  It was suggested that I consider the AUS, but I was not a candidate for a sling.  I decided on diapers for a number of reasons.  First of all, I did not want anymore devices inserted in me that could eventually cause issues.  In time the AUS needs to be replaced.  In addition, I now have heart failure that has caused numerous more tests and procedures over the last nearly 3 years.  I now am the not so proud owner of a pacemaker.  Lastly, I have become used to wearing diapers.  This is probably not the most popular choice amoung incontinent people especially with the stigma attached to it.  It's just another form of underwear.  Those are my thoughts.  Good luck with your decision, and be safe.  I am 73 years old.

  • Josephg
    Josephg Member Posts: 455 Member
    #4
    Quality of Life - Do What You Have To Do

    Scurrent,

    I have the AUS 800 artificial sphincter, and yes, the original one was replaced after 6 years of perfect operation.  It is unfortunate that you are not a candidate for an artificial sphincter, due to other existing medical issues.

    However, in my opinion, quality of life is the main consideration for PCa survivors, along with any ongoing treatments.  If you need to wear diapers, in order to maintain your quality of life, then do it, and move on in life.  Our time on earth is limited, and we should make the best of it.

  • RobLee
    RobLee Member Posts: 269 Member
    edited February 2021 #5
    Which is more important to you?

    My RP was five years ago, and was told I would require adjuvant RT due to my T3b stage w/SVI. However, I never regained continence, even after several months of training with a Kegel therapist. So I had the AMS800 AUS implanted just so I could get thru radiation. I also had two years of Lupron injections. As a consequence, I ended up being one of the small percentage of men whose testosterone never recovered from ADT and I am essentially a eunuch, with no interest in sex. Frankly I don't miss it that much, and my wife is fortunately understanding.

    Now the AUS is leaking a lot and I am wearing heavier pads. I knew going into this that the AUS would eventually require replacement, but the ART was necessary and I was focused on getting that done. I've needed other surgeries and at 70 I am getting to the age where I must prioritize what surgeries are more important. For my first year before ART I used external condom catheters and a leg bag, as was mentioned earlier in this thread. I have from time to time gone back to those as the pads become less practical.

    I know a bit about leukemia as our older son has T-cell acute lymphoblastic leukemia (TALL), had total body irradiation and a donor bone marrow transplant a few months ago. I know that it is a life altering event. He has fortunately avoided GVHD and is recovering well, so we do not want to be a downer by being frank with him about how cancer changes lives. (We have several other cancers in our family). Like all of us, he is happy to be alive but has not yet had to deal with the fear of recurrence which plagues us all.

    So I guess my point is that you always have the option of doing nothing. You can do nothing about your ED and you will survive. You can continue to use absorbency products for your incontinence and you will survive. I suspect that neither of these issues presents as great a threat to your life as would a recurrence of your AML. We all fret over what we will do about our problems. I've found that acceptance is the only path toward inner peace. Good luck to you!

  • dadspet
    dadspet Member Posts: 7 Member
    #6
    External Condoms, and penal clamp at times.

    I'm incontinent and use external condoms with a urine collection leg bag during the day and larger night bag. It's not a perfect solution but keeps me dry 90+% of the time. At times I use a penal clamp durning portions of the day but due to significant frequency this isn't always a great answer. My frequency is the reason I didn't opt for the AMS800 BTW.  I'm scheduled to try Botox injection to help my frequency issues (2 months out).  For external condoms I recommend having your supplier provide samples to see which ones and which size works best for you. You will need at least 3 samples of each since 1 trial wouldn't really be enough for a good test. My preference has been Conveen Optima due to their great package and a few other features most condoms don't have. I Also have used Bard Wideband which seems to stay on longer (also a little hard at times to get off) and I've used Spirt for awhile. Adding Water proof tape also helps keep the condom on if your having trouble keeping them on for 24 hrs and a Depends pad helps your confidence if the condom comes off. I tried several clamps but recently found the new Lunderg Confidence clamp to be the most effective clamp for me - I can keep it on longer, it doesn't leak much and is easy to keep clean.  I have a issue at night with   vacuum closing the condom outlet that I'm currently unsuccessful in trying to resolve.    

  • Trew
    Trew Member Posts: 932 Member
    edited April 2021 #7
    RobLee said:

    Which is more important to you?

    My RP was five years ago, and was told I would require adjuvant RT due to my T3b stage w/SVI. However, I never regained continence, even after several months of training with a Kegel therapist. So I had the AMS800 AUS implanted just so I could get thru radiation. I also had two years of Lupron injections. As a consequence, I ended up being one of the small percentage of men whose testosterone never recovered from ADT and I am essentially a eunuch, with no interest in sex. Frankly I don't miss it that much, and my wife is fortunately understanding.

    Now the AUS is leaking a lot and I am wearing heavier pads. I knew going into this that the AUS would eventually require replacement, but the ART was necessary and I was focused on getting that done. I've needed other surgeries and at 70 I am getting to the age where I must prioritize what surgeries are more important. For my first year before ART I used external condom catheters and a leg bag, as was mentioned earlier in this thread. I have from time to time gone back to those as the pads become less practical.

    I know a bit about leukemia as our older son has T-cell acute lymphoblastic leukemia (TALL), had total body irradiation and a donor bone marrow transplant a few months ago. I know that it is a life altering event. He has fortunately avoided GVHD and is recovering well, so we do not want to be a downer by being frank with him about how cancer changes lives. (We have several other cancers in our family). Like all of us, he is happy to be alive but has not yet had to deal with the fear of recurrence which plagues us all.

    So I guess my point is that you always have the option of doing nothing. You can do nothing about your ED and you will survive. You can continue to use absorbency products for your incontinence and you will survive. I suspect that neither of these issues presents as great a threat to your life as would a recurrence of your AML. We all fret over what we will do about our problems. I've found that acceptance is the only path toward inner peace. Good luck to you!

    AUS Repair

    I'm 72 and just had my leaky AUS repaired. When the AUS is working, its almost as good as the original equipment.

     

     

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