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Surgery for incontinence?

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User
Posted 06 Dec 2024 at 10:00

Anyone on here with any experience of surgery or further medical intervention for incontinence post RARP please?

Steve had RARP in January and although a 20% improvement …he is pretty much incontinent still! Not yet signed off from surgeon because of this, his take on it is if it hasn’t got any better within 12 month post surgery, (that’s only a couple of months away) then that’s it, it’s not going to happen and they are talking of investigations/possibly surgical intervention.

There is a suggestion from the surgeon that it may not be down to weak pelvic floors but due to the difficulty he had in reconnecting the urethra to the bladder…they won’t know until they investigate but something’s not right.

we have just come across the Emsella Chair pelvic floor treatment and are paying privately for Steve to give this a go for a few sessions to see if any improvements can be made. Had his first one yesterday so we will see, apparently it works very well for women’s pelvic floors so we thought if that is the problem, it could help, also we would have tried everything possible to us before giving in to more surgical intervention!

 

User
Posted 06 Dec 2024 at 16:11

It was 3 months. I think you are quite right to be concerned  -  at 10 months he should be on an improving curve.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 07 Dec 2024 at 08:04

Hi Debbie.

I'm sorry to hear that Steve's still having incontinence problems. I hope this link helps

https://www.kingedwardvii.co.uk/health-hub/treatment-options-for-urinary-incontinence-after-prostatectomy.

 

User
Posted 29 Dec 2024 at 10:39

Yes Chris, he is able to stop and start flow.

User
Posted 30 Dec 2024 at 11:36

Hello Debbie,

you can find my report regarding EMS as continence training here:

https://community.prostatecanceruk.org/posts/t31241-Severe-incontinence-after-RARP--EMS

You are always welcome to send me a (private) message in case you need more details
Being incontinent was a nightmare for me ... I'm glad if I can help others to get continent again!

Regarding "Stopping the flow mid stream": As Chris wrote: This should be only a test once in while - not a training.
My physio told my that it can cause "residual urine" after regular weeing when using this as a training too often. But as a test it's great ...

I wish you and Steve all the best!
Henrik

Edited by member 30 Dec 2024 at 11:37  | Reason: Format of link

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User
Posted 06 Dec 2024 at 10:41

Just a thought. During my prostatectomy my surgeon had a problem with reconnecting the urethra to the bladder and it continued to leak for 5 weeks and had to heal before the catheter was removed, leaving scar tissues. My consultant advised me not to undergo any invasive therapy for incontinence because it could make my incontinence issue worse. In the event I did recover leaving me 99.9% continent. All I did was Kegel exercises.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 06 Dec 2024 at 10:58
Yes Pratap it sounds similar as Steve’s catheter was in for 4 weeks post surgery…if he knew that eventually it would resolve itself (he does his kegels religiously), then he would gladly wait without surgical intervention. How long was it before you were 99.9% continent?
User
Posted 06 Dec 2024 at 16:11

It was 3 months. I think you are quite right to be concerned  -  at 10 months he should be on an improving curve.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 07 Dec 2024 at 08:04

Hi Debbie.

I'm sorry to hear that Steve's still having incontinence problems. I hope this link helps

https://www.kingedwardvii.co.uk/health-hub/treatment-options-for-urinary-incontinence-after-prostatectomy.

 

User
Posted 28 Dec 2024 at 11:07

Hi Ðebbie,
After my RPx I was totaly incontinent .... "totaly" means 8-10 diapers per day.
I treated myself successfully with EMS (Electric Stimulation), 3 times a day.
It took 3 months = 270 sessions for me to be continent again.
Before considering surgery, I would give it a try.

I'll translate and post my text from the German forum later this weekend with addidional information ...

Here is the unit I used: https://www.tensshop.de/spezialgeraete-elektrotherapie/profi-ems-tens-inkontinenztherapiegeraet-x4-inkl-anal-oder-vaginalelektrode.html

... sorry, german only ....

Good luck!
Best regards, Henrik

Edited by member 28 Dec 2024 at 11:09  | Reason: Not specified

User
Posted 28 Dec 2024 at 12:44
Thank you Henrik, that’s very reassuring, Steve is willing to try other options as from what we have read, surgery isn’t 100% guarantee to fix the problem

Debbie

User
Posted 28 Dec 2024 at 20:18

I think at this stage, he needs a full evaluation by a pelvic health physiotherapist. At almost a year out and doing pelvic floor exercises, that's either not going to help (the problem is something else), or it's being done wrongly, or it's being overdone, and you need a pelvic health physio to evaluate which of those it is. If the result is that no amount of exercise is going to fix the problem, then the pelvic health physio can report back to the surgeon what they've found, so the surgeon can propose further solutions.

It's worth adding that in a local support group, we have had patients whose continence improved by easing off the pelvic floor exercises - they were over doing them.

User
Posted 28 Dec 2024 at 22:45

Not an experiment to keep repeating but can you stop or reduce the flow mid stream. Being able to stop or reduce the flow would show the pelvic muscle contraction is doing something.

Thanks Chris 

Edited by member 29 Dec 2024 at 00:21  | Reason: Not specified

User
Posted 29 Dec 2024 at 10:38

Thanks Andy…all makes sense.  I had come across before somewhere a suggestion that you could overdo the PFE so that’s something Steve can address immediately (he’s was doing 6 times a day, dropped to 4 recently, but maybe should drop to 3).

we are going away for six weeks soon and have a meeting with urologist end of Feb so will certainly be asking for help to find out what the problem is…Steve really fed up with it now, understandably!

User
Posted 29 Dec 2024 at 10:39

Yes Chris, he is able to stop and start flow.

User
Posted 30 Dec 2024 at 11:36

Hello Debbie,

you can find my report regarding EMS as continence training here:

https://community.prostatecanceruk.org/posts/t31241-Severe-incontinence-after-RARP--EMS

You are always welcome to send me a (private) message in case you need more details
Being incontinent was a nightmare for me ... I'm glad if I can help others to get continent again!

Regarding "Stopping the flow mid stream": As Chris wrote: This should be only a test once in while - not a training.
My physio told my that it can cause "residual urine" after regular weeing when using this as a training too often. But as a test it's great ...

I wish you and Steve all the best!
Henrik

Edited by member 30 Dec 2024 at 11:37  | Reason: Format of link

 
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