Incontinence Question

Scurrent
Scurrent Member Posts: 2
in Prostate Cancer #1

I had a nerve-sparing DaVinci prostate surgery in 2015, Gleason 7, PSA 19.  I was 51 at the time, and in exceptional health.  After the catheter was removed about a week after the surgery, I was completely incontinent.  I only saw marginal improvement in the leaking in the months after the surgery, despite almost a year of pelvic floor physical therapy, urodynamics and a cystoscopy.  Currently, I leak over 500 ml of urine every 24 hour period. It is purely stress incontinence, no real urge is ever present.  I get up several times a night to urinate.  The situation is complicated by two prior bone marrow transplants for CML leukemia just a few years before the prostate cancer.  I saw my oncologist recently to ask about getting the AMS 800 Sphincter.  He will not insert the sphincter due to a high probability of rejection on account of the prior bone marrow transplants.  I saw another very well respected urologist who agrees that I am not a candidate for the AMS 800 for the same reasons.  The various drugs, such as Detrol, only work for urge incontinence.  I am told that my leakage is too heavy for the sling procedure.  Are there any other options I might consider?  Any input is appreciated.  Both urologists I treated with are top of their class, just outside of NYC. 

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    edited June 2020 #2
    Options

    Hi,

    Sorry to hear about your problem.  The only thing I can think of is either internal or external catheters.  If it was me I think I would go with the external type first with a slim fitting leg bag.  The only other thing are several different types of external penis clamps that are on the market.

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    edited June 2020 #3
    Bladder's positioning matters

    Scurrent,

    Welcome to the board. I agree with Dave's suggestion above, however, I think that you could firstly try identifying the full cause of the incontinence. You say that "...   It is purely stress incontinence, no real urge is ever present  ..." but I believe that the several night trips to the toilet are due to urgency. You get up because your brain received signals from the bladder and wants to empty it. I think that the surgery has damaged the nerve bundle close to the sphincter but the nerves at bladders walls are still controlling urine flow. The position of the bladder when lying down causes urge but when in standing position it loses sensation. Relocating the bladder into a reclining position could eventually change the way your body control urination.
    The above is done simply by pinning down the neck of the bladder. They call it “Retropubic Suspension”. You can discuss the matter with your doctor to verify if it would work with you.

    You could also investigate about bulking which involves injecting a substance into the lining of the urethra to increase its thickness therefore creating resistance against the flow of urine. That would allow urine to accumulate in the bladder causing urge when its level became high. Collagen injections are used for various purposes in the medical world.

    Fortunately to me I never experienced incontinence since my surgery of 2000. I rarely experience stress incontinence but the holding period to pee become shorter. I can easily manage about 30 minutes waiting since symptoms. However, penile shrinkage has fastigiated me for years as it becomes most inconvenient when seated in the toilet. I have to make it sure that it points down otherwise the urine will be ejected under the seat lid. Sometimes I get a buried penis peeing in all directions through the shrinked skin.

    Best wishes,

    VGama

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