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artificial urinary sphincter (AUS)

User
Posted 20 Oct 2019 at 17:58

I had my prostate removed ten months ago. All cancer was removed thank goodness, but I have had severe urinary incontinence with a constant dribble.  I am starting to consider an AUS because this has affected my life and made me miserable.  I have some questions for anyone out there who have experience of this and are happy to share with me:

How long does an AUS last and do they work?

Is it easy to turn on and off when I need a pee?

Last but not least, will I be able to ride my bike?

Any other side effects or outcomes?

Has anyone had severe incontinence for this long and then recovered to a large extent?

I am an active 69 year old with no other health problems.

Thank you

Sammy T

 

 

 

User
Posted 20 Oct 2019 at 19:42

S

Search this site for AUS , Tonypw has a good post detailing his journey.

Thanks Chris

User
Posted 20 Oct 2019 at 21:07

Hi Sammy

My diary of experiences with an AMS-800 AUS can be found here : https://community.prostatecanceruk.org/posts/t11152-Artificial-Sphincter--AUS----Diary-of-experiences

Looking at your points :

How long does an AUS last and do they work?  Mine has been working since mid 2015 and is still working as well as when it was installed.  Note, my AUS does reduce my incontinence by a really significant amount.  There are occasional leaks if I have a cough or sit in the wrong position (see bike below).  I am not medically qualified, but looking back to my engineering training, the device has to fail safe and so permit some flow under stress so that there is not a back-up to the kidneys.  For me, it is almost, but not quite as good as my original natural sphincter (and that was as tight as a bulldog clip).  The device is guaranteed I think for 5 years.  I seem to remember papers written on the ongoing effectiveness of an AUS - try a Google search.

Is it easy to turn on and off when I need a pee?   Yes, but an AMS-800 is difficult to use with one hand, so you can be a bit more modest by avoiding the urinal in the gents' loo.  Also it is slightly difficult to use if you are carrying a shopping bag at the same time.  Five to six sqeezes of the pump releases the cuff fully, and it closes by itself over about 45 seconds.  I use a very light Tena pad just to catch the drips.

Last but not least, will I be able to ride my bike? I have asked this question quite a lot but not received a definite reply.  The cuff on my installation is quite a long way forward because it had to avoid the site of the previous bulbar sling attempt to handle incontinence.  Consequently it is not protected as much as one installed further back.  I am going to grit my teeth and try the bike soon.  There are saddles that spread the load and have a void in the middle, but are relatively expensive.  The other time that the cuff can distort is when I'm sitting on a hard wooden bench or chair and I rock forwards.  However these leaks feel worse than they are and are easily caught in the light Tena.  I've only had to use more than one pad in a day when I have had a filthy cold and cough.

Any other side effects or outcomes?  Before I had the AUS fitted. I was extremely fed-up and may have been heading for depression over the level of incontinence.  The main side effect of the AUS is that now I feel a lot better, and, wait for it, if it wasn't for Brexit, I might even be feeling cheerful.

Has anyone had severe incontinence for this long and then recovered to a large extent?   I live in hope, but I'm afraid the answer is probably no.

Hope this helps.  Any other questions, please put on this thread or send me a personal message.

Tony

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

User
Posted 23 Oct 2019 at 16:18

Thanks a lot for your reply and it is quite reasuring. I am hoping to see a specialist next week who will send me in the right direction or aleaast help me to decide. 

My experience of help to date has been "are you doing your pelvic exercises?"so I am not hopefull.

Again thanks a lot

Sammy

User
Posted 11 Nov 2019 at 20:28

Hi Sammy   I've had two years of non-improving incontinence. I went back to my surgeon who arranged for a cystoscopy which showed that my bladder sphyncter was partially open all the time (possibly damaged during prostatectomy) so no amount of pelvic floor exercises would have helped. I was sent to 2 consultants to discuss male sling and AUS and in the end opted for the former. Have you considered this rather than the AUS? After two "top-ups" of the sling reservoir I am now virtually dry and only wear a shield (lightest pad) for a few dribbles and because it's difficult to believe that it's finally worked. Anyone who has had a prostatectomy should ask for this sort of help if they are still incontinent after two years.

User
Posted 10 Jan 2020 at 11:40
Thanks B rock for your comments re a sling. I apologise for not returneing your post earlier. I am having tests this week to try and a find what the problem is. this tests involve tubes up fromt and back and a camera. I hope its a small comera not a smartphone.

It is now exacly one year since I had my prostate removed and I have constanly leaked since that and I rarely pee in a toilet.It is getting me down.

An amusing instruction for my tests is that I should arrive with a full bladder. Chance would be a fine thing.

Bizzarly I hope they find something wrong that can be fixed, say with a sling or AUS as I cannot envisage the rest of my life dribbling.

I forgot to mention my cancer is cleared.(I think/hope)

Thanks again for your reply

User
Posted 10 Jan 2020 at 13:02

Originally Posted by: Online Community Member
I hope its a small camera not a smartphone.

 

🤣🤣🤣  Best post in weeks! 

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

User
Posted 10 Jan 2020 at 13:56

Hi Sammy

 

I only had a camera up to the bladder and was very similar to having a catheter inserted. Sounds as if yours could be more complicated id doing the rear as well. I had a third top-up to my sling reservoir in December and the best Christmas present - I am now "dry", so that area of my health is back to normal thank goodness. I don't know where you live but can thoroughly recommend Mr Foley at Royal Berks Reading (NHS) to do the sling operation and follow-up " top-ups" - very friendly and informal and his positive attitude before and after the op was most helpful. Mark

User
Posted 10 Jan 2020 at 14:55

The probe in the back passage is very small and has something to do with measuring pressure. The test I had involved laying on my back, the technician filled the bladder, I had to say when I wanted to urinate and at that point the table was rotated so I was in the standing position. I do recall having to empty the bladder before leaving not just to make sure you can but also to get rid of a dye or something they used. All pretty straight forward. 

Thanks Chris.

User
Posted 10 Jan 2020 at 15:47
I forgot to mention (but most importantly) my local prostate cancer support group has been the best source of "real life", non-medical advice and support. The doctors and nurses are excellent medically but few of the former (and none of the latter!) have experience of the actual day-to-day problems and solutions regarding prostate cancer or incontinence. Take a look at https://prostatecanceruk.org/get-support/support-groups
 
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