Coping with and treating incontinence following RP

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Hi All.  I'm a newbie to the community.  I'm 71 years old and had an RP last November following an unsuspected diagnosis.  My last PSA was less than 0.01 so the surgery seems to be a success, for which I will be eternally grateful.  However, some 4 months down the line I remain TOTALLY incontinent and am beginning to despair of the future.  My physio has referred me back to the consultant and I have a telephone appointment with him next week which I'm a bit apprehensive about. In my first review meeting he came across as arrogant and dogmatic.  I will be seeking guidance as to medium term treatment when when the "surgery" has healed and additional coping measures until that becomes available.  I am routinely undertaking pelvic floor exercises, wearing a combination of pads and occasionally a Pacey Cuff. 

Can anyone suggest other practices which I can raise with the consultant?  I tried drinking only water for 3 days without success.  I will discuss an external catheter, although last time he told me in no uncertain manner that he does not recommend their use since "patients don't do their pelvic floor exercises".  

When fit, I am considering an Artificial Urinary Sphincter rather than a sling given the degree of my problem.  What experience do members of the Forum have with AUS?  What options are there for different products?

Looking forward to hearing from your experience.

  • Hi Huffies

    I has AUS fitted after 12 months of incontinence , scan showed damage to bladder neck and nothing would cure problems apart from an AUS

    Life changer is all I can say

    Happy to chat more on subject 

    Denis 63 UK

  • Hi I’m 14 months and still incontinent. I have been seeing a specialist physio which hasn’t helped. 
    sorry but what is an AUS 

  • Hi Tazzo

    Great to hear your news. Since my last post there has been some progress but unfortunately not with my incontinence. A week ago I had telephone conversations with my MacMillan nurse, my physio, my urology nurse, my consultant and another from my MacMillan nurse.  In brief, after another tetchy time with the consultant during which he asked me to describe “unsustainable” and the shape of the standard graph showing average improvement with time, he finally agreed to refer me to the AUS specialists for a “second opinion” (I’d already told him that I had previously paid for a private second opinion).

    I’ve done some research about various AUS devices but they seem to be all from the USA.  Before you had yours inserted were you provided with options or is it a case of take it or leave? Do others here have any pointers?

    I can’t leave without say how great the MacMillan team have been arranging dietary advice and access to alternative therapies such as massage, aromatherapy etc.  I feel more positive than 2 weeks ago.

  • It is true ....I found out last week. I  manage quite well with a average daily consumption of liquid. IM sticking to no more than Grin 3 per pub visit. I felt the need to share that with you all.

  • Hi, no I wasn't given a choice of AUS

    I have AMS 800 version fitted

  • Hi Huffies, similar probs. 66yo, still working. Radical P. in December and sadly 10days after pus, blood from Infection.  Back for Xmas in hospital, pain,morphin. Month later chucked out causing pain+pus and debris catheter and then started Incontinence. Work from Feb. sadly w.pad+ pants and plastic bag layer as twice a week trousers were wet.           ă€‹Spec Nurse abolished my 15 series pelvis Ex. saying it weakening muscles, do ONLY 5 but good. Ev. squeezing makes dripping so trying on toilet. It started 10% improve, still 2 pads a day, reinforced with pap.tissues (NO caffeine). 》Month ago even sadly ED, almost no sensation, I've had to buy a condoms....catch waters being in work, 5 pads and pants wasn't n enough  》Now I stopped to consider artificial  sphincter as complicated  and NO way Back from.  》Incontinence Help Center Waiting list for any help, ph.talk, pads support is 4 months, my hosp nurse says 'just exercise!'  》So I think THAT is the way,  may take long with diligence, different positions plus diet should be rewarding!  Don't give up, all the best 

  • Hi Huffies, didn't go down the RP route though still had bladder issues. my urology department, which i assume is like everyone else's will not offer anything but basic treatment for incontinence for 6 months to give your body time to heal and you time to strengthen your pelvic floor and lower abdomen before more invasive measures become necessary.

    Eddie