Leak,leak,leak,leak

Leak,leak,leak,leak

User

Posted 16 Jan 2017 at 15:08

I parted company with my prostate via robot in May 2014, it wasnt an easy recovery took far far longer than I was led to believe

Im in a much better position now, but still suffer from leakage, mainly on movement, followed all the guidelines, the damn exercises, etc there has been much improvement but Im still experiencing leakage, (3 pads a day,) I stopped drinking tea, coffee etc for a period made no difference,

I think the urinary nurse has giving up on me as my last appointment was over a year ago, none have been forth comming, I had tests (cant remember what they were called) they said All was Ok, no retention, prescribed meds for an irritable bladder , I didnt think I had one, so it was decided to stop taking those, as they done zero as far as i could tell

perhaps Im a lost cause and this is my lot in life...get on with it,

I wonder if theres anyone out there who can shed some light, feeling really Peed off at present (pun intended) this can be a long road we travel with many bumps....

User

Posted 16 Jan 2017 at 17:36

Hi John

Don't despair, there are solutions that help to return to within an ace of normality. The most distressing part of incontinence is being told continually about pelvic floor exercises with the implication that, if you still leak, you are not doing them correctly. From personal experience, I am a firm believer that if PFEs are going to help, then they will, if they are not going to help, then they won't.

If you have a look at my profile (click on my username to the left), you will be able to see what I have tried. Eventually I gave in and had an artificial sphincter implanted; it isn't (and no appliance ever can be) as good as the original provided by nature, but it has helped me back to as normal a life as possible. With a bit of a struggle, it is possible to get one via the NHS. Our local health board is in dire financial straits so I gave up the wait and spent the kids' inheritance on mine.

Have a look at the profile. Any questions, I'll be very happy to answer. Use a personal message if you would prefer.

Hope this helps! You are not alone!

Tony

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

User

Posted 16 Jan 2017 at 19:57

Titanic

I had my RARP a few weeks prior to you, for 15 months I was dry but following a series of urethral problems find myself incontinent, not as bad as you sound. PFEs worked for me post surgery, but didn't seem to have any effect with my later incontinence problem.

As Tony has said there are options, I used and am again using the Conveen sheaths, they are a life changer and may help. There is a newish system called Afex which consists of a collector, bag and special underwear, someone on here is trying them at the moment.

The sling and AUS are a bit more radical but Tony is proof that the AUS is effective.

Thanks Chris

Edited by moderator 16 Jan 2017 at 19:58 | Reason: Not specified

User

Posted 17 Jan 2017 at 05:37

Thanks Tonypw,

youve had a "challenging time" getting an AUS, not an easy business
but its got me thinking I must admit,

Ive decided to get another appointment with the urinary nurse and pickup where id got to last year, I believe I had a urodynamics flow test and was given the green light, by this time I'd become completely negative with it all so didnt persue a follow up appointment, I kind of accepted this is as good as I can expect at present,

cant say Im thrilled at the prospect of more tests and maybe surgery,
but thank you for your post...appreciate that !

john

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