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RP side effects

User
Posted 04 Jul 2022 at 22:55

Hello

 

I'm new to this site, found some of the comments helpful.  I had a radical prostatectomy in April 2019, a successful operation and I've recovered well.  My only disappointment is with the incontinence.  Despite doing all the recommended exercises, I am still using 4-5 pads a day.  Has anyone else had similar problems?  I was hoping to regain my continence after 12 months maximum, but it hasn't happened.  I understood that 95% of men regain control, so maybe I'm just 1 of the 5%.

I have heard of a minor operation that can help this problem, has anyone had experience of this?

 

User
Posted 05 Jul 2022 at 00:18
It is called a urinary sling but it isn't a minor op. You may have some work to do to be eligible so it would be useful to know what support you have already had:

- are you under the care of an incontinence nurse or clinic?

- what does your surgeon say about it?

- If not under the care of your surgeon anymore, have you been referred back to urology by your GP or incontinence team?

- have you been assessed by a physiotherapist?

You need to explore all these options before thinking about the surgical option.

By the way, the NHS statistics are that by 12 months post-op, 90% of men are using one pad per day or less; there is no statistic for how many men are totally dry but I suspect it is significantly lower than 90%. At 5 pads per day, you fall into the 10% but that doesn't mean that you cannot be helped. In the meantime, have you tried alternatives to pads, such as a Dribblestop clamp or Conveen sheath? Some men don't like them but others find them life-changing.

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

User
Posted 05 Jul 2022 at 10:26

Thanks for your response. I'm under my GP now, and hadn't thought to ask for help there. Didn't think of physiotherapy either. Want to avoid surgery if possible. Your other suggestions were helpful too.  I've just been getting on with it  particularly with Covid being the main focus for the NHS over the last 2 years.  Perhaps it's time I took some action. Thanks again, I'll post again soon 

User
Posted 05 Jul 2022 at 12:48

John can you stop your flow mid steam, if you can it gives an indication that the mechanics may still be working. 

As Lyn suggested you could try the sheaths, they are not without some issues but they can be a life changer. Some urologists don't like the idea of them say it makes you lazy, but three years after surgery you may need some alternative solutions. Never tried the clamps. 

They Chris 

User
Posted 05 Jul 2022 at 12:55

It's specifically a pelvic health physiotherapist you want to see (and obviously one that does men - many of them only do women).

You could ask your GP for a referral, but you might have more success by asking your clinical nurse specialists if you still have their contact details.

If you come along to one of The FOPS meetings, we have a pelvic health physiotherapist who usually attends, not to mention 3 consultant urologists too, and that would be an excellent place to get some advice. (Contrary to what it says on the website, we don't yet have out next meeting planned.)

User
Posted 05 Jul 2022 at 12:58

Thanks for your response. Yes, I can stop mid stream. Will definitely be more pro-active now, and look at getting it sorted, or at least improved. Ist stop my GP, I think.

User
Posted 05 Jul 2022 at 13:27

John , do you actually urinate in to the toilet or do you just continually leak into the pads. One of the first things you may be asked to do is provide a urine diary. 

You record how much you drink and sometimes what you drink. You record how much you urinate and how much you leak. You will need a urine bottle with a measurements on the side. For leakage you weigh the wet pad in grams subtract the weight of a dry pads in grams, the figure you are left with an indication of the amount leaked. 1gram is equal to 1ml.

For the purists I have not taken into consideration the weight of urine compared with the weight of water or the evaporation of any urine from the pad.

Thanks Chris 

User
Posted 05 Jul 2022 at 13:42

Really helpful, thanks Chris. I urinate in the toilet and get the correct sensation when I need to go. The flow is no problem. It just seems strange to me that despite this fairly "normal" routine, I still get a lot of urine in my pads without feeling it. Maybe I've not been doing the exercises correctly. A physiotherapist might be able to help.

User
Posted 05 Jul 2022 at 21:13

Hi Jon, interesting that you say you don't feel the leaks which almost seems to suggest it's a very slow seepage rather than an intermittent dribble which is what I experience. Certainly in my case the dribble is sufficient to get that warm feeling which allows me to react and tense the pelvic muscles. It might be worth mentioning that to your doctor because not being able to feel it happening must make it difficult to train your pelvic muscles. I have engaged a pelvic floor physio and found him very helpful. He is also happy to discuss ED problems at the same time. Chris

User
Posted 05 Jul 2022 at 21:55

Thanks Chris, that was also very helpful.

 
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