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living with incontinence

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User

Posted 02 Dec 2015 at 20:31

living with incontinence ...

post prostatectomy, how long can a man suffer having his scrotum sitting it a urine soaked pad 24 hours a day?

After 6 years the pain and discomfort is, at times, unbearable. What am I doing wrong? Surely there's a cream, a painkiller of sorts. I've considered castration.

User

Posted 02 Dec 2015 at 22:24

How awful for you Old Mucker. There is a treatment (someone will correct me on the precise details) called AUS which can help some people. Has anyone suggested this to you?

Best wishes
Allison

User

Posted 02 Dec 2015 at 22:25

Could I suggest a Coloplast sheath and leg bag? It won't help the incontinence but would have the effect of keeping you dry to keep the chafing and soreness to a minimum. These should be available via your GP on prescription.

At a more extreme level, I have just had an artificial sphincter fitted, and it works....

Edited by member 02 Dec 2015 at 22:27 | Reason: Not specified

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

User

Posted 02 Dec 2015 at 23:17

Old mucker

I have only been incontinent for a few weeks and it is already getting me down so six years must be a nightmare. I am seeing my incontinence nurse tomorrow and will be pushing for the coloplast solution. It is on their list of products but not sure if it is available on the NHS. It does seem strange that the norm to be offered is a pad that as you indicate leaves you sitting in your own urine.
I seem to remember at the start of my journey reading that Urology consultants had an obligation to look after us long term, not to just get rid of the cancer and leave us to live with the aftermath.

Thanks Chris

User

Posted 02 Dec 2015 at 23:32

Great result for you Tony, sorry to see you are suffering OM.

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 03 Dec 2015 at 00:16

Hi old mucker, are you using a good quality pad and changing them often enough? Your skin should be dry not damp.

What have you done so far? Have you been referred to the incontinence clinic for your area? If not, ask the GP for a referral now!

Conveen sheaths seem to get good comments on here and may be your next step; before considering surgery you would really need a medical assessment of what is causing the incontinence.

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

User

Posted 03 Dec 2015 at 09:17

Hello Old Mucker and welcome.

I too am surprised that the pads are leaving you damp as I thought they were one way.

In the short term (until you can get a coveen - although I'm pretty sure I've seen these for sale) have you considered a good nappy cream (Drapolene) since that is designed to protect the soft skin in a baby's bum from chaffing.

Just checked Drapolene on the net and the following is a quote

"Relief of nappy rash and help for prevention of nappy rash, relief of urinary dermatitis in adults and as an adjunct to patient care hygiene for the prevention of urinary dermatitis
Symptomatic relief of minor burns, limited sunburn and the effects of weather

It might help perhaps

We can't control the winds - but we can adjust our sails

User

Posted 03 Dec 2015 at 10:34

A quick tip on pads. Following my sphincter implant back in October (i.e. before activation) I was very tender in the area under my scrotum and as I was leaking even more than before, pads were getting soaked rapidly and were chafing. I was using Abri Man, and they are very long. I found that folding the lower section back on itself reduced the chafing considerably but still managed to catch the leak

NB Pads should not be cut - that destroys the seal and nullifies the effect.

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

User

Posted 03 Dec 2015 at 15:44

Saw the incontinence nurse today and I am going to get the coloplast /conveen equipment. Our urology department are not keen on them as some guys use them as a long term solution to incontinence. As mentioned by L, bladder retraining classes are available and the nurse has given me an leaflet to get started. Why do we get more info from members than the professionals ?

One of the obvious things was to cut out caffeine, but it does say to do it gradually.

Old mucker I Hope you can find a solution to your own situation.

Thanks Chris

User

Posted 06 Dec 2015 at 11:43

Thanks everyone for your replies/concerns. The situation can be thoroughly depressing at times … funny how I soon accepted all the inconveniences but not the discomfort. I guess I was feeling thoroughly fed up when posting the above opener the other night.

User

Posted 06 Dec 2015 at 11:47

Originally Posted by: Online Community Member

How awful for you Old Mucker. There is a treatment (someone will correct me on the precise details) called AUS which can help some people. Has anyone suggested this to you?

Best wishes
Allison

Thanks Allison ... I've been through two failed attempts to fit a sling, and more recently had the AUS explained to me, and been told I just need to give them the OK.

User

Posted 06 Dec 2015 at 11:49

Originally Posted by: Online Community Member

At a more extreme level, I have just had an artificial sphincter fitted, and it works....

Thanks Tony ... hmmm I'll think about the sheath. And as mentioned about, I know the AUS is an option ready & waiting.

User

Posted 06 Dec 2015 at 11:52

Originally Posted by: Online Community Member

Thanks Chris for your input. Interesting what you say about the Urology consultants obligations.

User

Posted 06 Dec 2015 at 11:58

Originally Posted by: Online Community Member

Hi old mucker, are you using a good quality pad and changing them often enough? Your skin should be dry not damp.

What have you done so far? Have you been referred to the incontinence clinic for your area? If not, ask the GP for a referral now!

Conveen sheaths seem to get good comments on here and may be your next step; before considering surgery you would really need a medical assessment of what is causing the incontinence.

Hi Lyn ... I get 5 pads a day delivered by the NHS, plus Cavilon barrier cream plus Hydrocortisone 1% which everyone but my GP seems to think should not be use on a regular permanent basis. Conveen? Thanks, I bear that in mind.

User

Posted 06 Dec 2015 at 12:01

Originally Posted by: Online Community Member

Hello Old Mucker and welcome.

I too am surprised that the pads are leaving you damp as I thought they were one way.

Just checked Drapolene on the net and the following is a quote

It might help perhaps

Hello Johsan ... and thanks ... Drapolene, sounds like another name worth knowing.

User

Posted 06 Dec 2015 at 12:04

Originally Posted by: Online Community Member

NB Pads should not be cut - that destroys the seal and nullifies the effect.

Tony ... Abri Man, just googled that and sounds most interesting, cheers.

EDIT ... Tony, I'm not quite sure I know what you mean, how folding the lower section back on itself reduced the chafing.

Are you able to tell me which pad in the following link you were using: http://www.abena.co.uk/Pads_for_Men.aspx?ID=15361

In the past I've experimented, unsuccessfully, with trying to separate my penis and scrotum with a fold/ridge in the pad. And I've often though someone should design a pad that allows this. I dream of being able to bath, dry myself and apply talc to my scrotum, then wear a pad that allows the leaked urine to soak into parts that are completely isolated from the scrotal compartment.

Edited by member 06 Dec 2015 at 14:00 | Reason: Not specified

User

Posted 09 Dec 2015 at 21:37

Try something simple like sudocream. It's messy, but if it keeps baby's bottoms dry, it might work

User

Posted 09 Dec 2015 at 23:53

5 NHS pads per day - that might be your problem. Have you tried buying some decent quality ones from the supermarket to see whether they are more comfortable? Try a few different ones -TENA men and the Boots own brand seem most popular - and then if they seem better, look at how they could be made more affordable.

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

User

Posted 10 Dec 2015 at 04:17

I was using Abri Man Formula 2 - chose those because they are better in preventing you slipping out of the side (problem I had with Tena). However, Abri Man extend well down under the scrotum so I was doing what I think you have tried already in folding the lower section back on itself, adhesive strip to adhesive strip.

Conveen/Coloplast does sound the better solution though... They are available from the NHS in Wales. Even in England should be free of charge.

NB, if anyone can come up with a solution for managing incontinence that is a) comfortable to use, b)works infallibly c) does not involve surgery, d) allows the use of the stalls in the gents' loo without extensive undressing, in fact returns exactly to the pre-operation state, they will be rich beyond measure...

Edited by member 10 Dec 2015 at 09:43 | Reason: Not specified

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

User

Posted 10 Dec 2015 at 13:30

Originally Posted by: Online Community Member

Try something simple like sudocream. It's messy, but if it keeps baby's bottoms dry, it might work

thanks Louise, it is messy but yes perhaps I should be looking at different types of barrier cream.

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