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Incontinence 1 year on after a radical prostatectomy

User
Posted 20 Oct 2019 at 21:27

Hi David

I think from the tone of your post that you are feeling pretty down about the level of incontinence.  What doesn't make it any better is the number of men who are absolutely dry after RP and are not backward in telling about it, and on the other side, reading entries on this forum from men and their families who are going through hell with radiotherapy and chemotherapy, so why are we making a fuss about a bit of incontinence?  On top of that we are told (including by the professionals) that PFEs are the answer when in some cases they just don't work.......it isn't easy. Personally I found heavy incontinence extremely difficult to live with and have tried many different possible solutions.

My diary of experiences is here : https://community.prostatecanceruk.org/posts/t11152-Artificial-Sphincter--AUS----Diary-of-experiences    My AUS was installed in mid 2015 and is still working as well as when it was first activated.  It isn't perfect, but the boost it has given to my confidence is significant.  No more wet trousers, no more having to travel everywhere with a rescue kit and mounds of pads.

Any questions or fears, please don't hesitate to get in touch, either through this message thread or by personal message.

 

Tony

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

User
Posted 20 Oct 2019 at 21:51
Hi David,

Following Tony's comments in August (see above) I decided to opt for the AMS 800. This was fitted 2 weeks ago so it won't be activated for another 4 weeks. Once it is I'll let you know how it goes.

In the meantime I will continue to use the Conceen system which I found to be pretty reliable once I got the correct size sheath. Are you aware that as well as different diameters they do 2 lengths, short and standard? I found this out when talking to Coloplast to request samples. I was told they send the short one unless you ask for the standard which seems odd - I would have thought they would send the standard one as standard, but apparently not. The only times I have had a problem since getting the size sorted out have been "user error", twice with the tube snagging and pulling off the bag and once with allowing the bag to get too full (there is a point at which the pressure from the bladder has to go somewhere and it will eventually push out around the sheath).

I hope this is of some help

Will

User
Posted 20 Oct 2019 at 23:08
Tony & Will,

Thanks for your comments, and yes, feel down at present, not helped by a trapped nerves in my back, probably going back to when I was gored by a bull. When i had previous problems with the Cancer there, I felt there was some urgency and now it seems you have to chase as waiting for Urodynamic test at present.

Coloplast have been really good and am using the standard which is a fair bit longer than the short. My problem is I can urinate very fast and it can blow the pipe off or force the sheath off. Initially had problems with pads not absorbing the flow quick enough and it running down my leg until the Continence nurses came up with a better pad.

Will be really interested to know how you get on Will and hope all goes well.

Tony, Did anyone mention to you when you had your TURP that this would be a complication if your Prostate was removed later, as nothing was said to me, yet it seems to be a well known fact by Surgeons that incontinence is likely to be a problem if this happens. Had I known this I would have requested that my Prostate was removed first as I knew I had Cancer.

David

User
Posted 21 Oct 2019 at 09:25
David - No, cancer did not come into the discussion. I was being treated for BPH because my PSA at the time was relatively low ( but only as a one-off measurement, I had no historical measurements to establish a trend ). Also I did not have a biopsy before the TURP, it was the residue from the TURP that discovered the cancer, and of course, then it was too late and I had to move pretty quickly. I suspect that the fairly short period between TURP and LRP was one of the contributory factors.

In hindsight would I have chosen a different route? Probably not other than giving in to an AUS rather earlier.

Tony

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

 
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