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Two years on and still incontinent!

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User
Posted 16 Jan 2020 at 18:16

Hi all,

I had my prostatectomy over two years ago and am still troubled with incontinence (about 300mL per day, contained by two pads). I have never stopped pelvic floor exercises (4 sessions per day) and am attending a pilates studio to try and strengthen pelvic muscles. I am about to undertake some bladder examinations, to see if that is the problem, but it looks as though I am heading towards an artificial sphincter. I am not at all sure I want to do that, as I live an active life and would worry about problems arising with the sphincter if I am nowhere near a hospital.

Has anyone out there any personal experience that could help me make a decision, please?

User
Posted 16 Jan 2020 at 21:28

Sorry to hear your troubles John

I am sure someone here might be able to give some advice/input

I am 6 months post RP, still degree of incontinence

User
Posted 17 Jan 2020 at 12:12
So sorry you short straw. We don't have many men post who are long term incontinent. It would seem you have obtained some professional advice about possible ways forward and it seems to me that this is what you should seriously consider in taking the next step.
Barry
User
Posted 17 Jan 2020 at 16:37

John, after 2 years this is unlikely to be down to your pelvic floor - don't be fobbed off :-/

There is no reason to think you would need to stay near a hospital with an AUS. People with pacemakers, false knees, etc travel all over the place.

Edited by member 17 Jan 2020 at 16:38  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Jan 2020 at 19:31

Hi I was using up to 3/4 pads a day after two years post surgery I went for the AUS in 2018 its been life changing for me I now just wear one pad a day and this is only for coughs and sneezing its given me back some dignity I hope this helps . I remain quite an active 70 year old person . I hope this gives you some encouragment

User
Posted 17 Jan 2020 at 19:43

Hi John

Hope you may be able to find something useful here.. AUS Diary-of-experiences

Cheers

Tony

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 20 Jan 2020 at 17:44
With my AUS (Google AMS800), the most likely point of failure is loss of pressure in the reservoir, and it is that that holds the cuff in the closed position, so it fails safe (i.e. open). The AMS800 is quite an old design now, and has been through a few refinements. There is a later one - the details are on the message board somewhere - do a search for "AUS". If you can't find the reference, I'll have a look for it when I am back later this evening.
Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

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User
Posted 16 Jan 2020 at 21:28

Sorry to hear your troubles John

I am sure someone here might be able to give some advice/input

I am 6 months post RP, still degree of incontinence

User
Posted 17 Jan 2020 at 08:07

Thanks for your good wishes. I wish you the very best with your progress. 

User
Posted 17 Jan 2020 at 12:12
So sorry you short straw. We don't have many men post who are long term incontinent. It would seem you have obtained some professional advice about possible ways forward and it seems to me that this is what you should seriously consider in taking the next step.
Barry
User
Posted 17 Jan 2020 at 16:37

John, after 2 years this is unlikely to be down to your pelvic floor - don't be fobbed off :-/

There is no reason to think you would need to stay near a hospital with an AUS. People with pacemakers, false knees, etc travel all over the place.

Edited by member 17 Jan 2020 at 16:38  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Jan 2020 at 19:31

Hi I was using up to 3/4 pads a day after two years post surgery I went for the AUS in 2018 its been life changing for me I now just wear one pad a day and this is only for coughs and sneezing its given me back some dignity I hope this helps . I remain quite an active 70 year old person . I hope this gives you some encouragment

User
Posted 17 Jan 2020 at 19:43

Hi John

Hope you may be able to find something useful here.. AUS Diary-of-experiences

Cheers

Tony

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 20 Jan 2020 at 16:40

Thanks a lot, Tony, I have read your amazing diary and found it very helpful. I have a couple of bladder examination appointments in the next few weeks, to see whether overactivity in that department is a factor. Depending on that outcome, I will then have to consider the AUS route. I'm encouraged by the experiences described here but, being an engineer, I'm worried about possible AUS failure mechanisms. If the device fails in the closed position and I am a long way from any medical support, what happens then? I'm lucky, at the age of 77, to lead an active life with quite a bit travel and I don't want to feel that I dare not do that any more.

Very best wishes for your continued good health,

John

User
Posted 20 Jan 2020 at 17:44
With my AUS (Google AMS800), the most likely point of failure is loss of pressure in the reservoir, and it is that that holds the cuff in the closed position, so it fails safe (i.e. open). The AMS800 is quite an old design now, and has been through a few refinements. There is a later one - the details are on the message board somewhere - do a search for "AUS". If you can't find the reference, I'll have a look for it when I am back later this evening.
Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

 
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