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Recurrence of incontinence

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User
Posted 04 Mar 2023 at 15:14

I've had a prostatectomy and salvage radiotherapy. At one time (best between the two treatments), I thought that my incontinence issues were over and only had to wear a pad, made worse by drinking strong coffee or alcohol. But in the last 6 months my incontinence as come back pretty heavily, necessitating 2 pads a day, but no incontinence at night, I'm glad to say.

Do I have to live with this for the rest of my life, or will my continence come back?

User
Posted 04 Mar 2023 at 18:09
Have you kept up your pelvic floor exercises?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Mar 2023 at 01:39

Have you had any recent changes to medication either prescription or non prescription?

 I don't know how widely many substances are studied for side effects on men with our modified plumbing arrangements.

In my case I'm 16 months post op but found out the hard way if I take ibuprofen for more than a day it sets me back to about week 6 in the continence recovery process. (incontinence is listed as a rare side effect of ibuprofen). Fortunately I have had very few issues but the first question I ask myself is has anything changed over the last few days?

User
Posted 05 Mar 2023 at 20:00

Bernster, I can't give an answer to your question but just to say you are not alone. I had SRT seven months after my prostatectomy and at that point I really thought I had got my continence more or less cracked. By the time I had completed the 33 sessions I was back to wearing Tena 2's. It's now four months since RT finished and there's not really been much improvement despite regular pelvic floor exercises. I have an appointment with my Onco at the end of this month and I will be asking what the prospects are for any improvement in continence. If I get any useful information I will feed it back.

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User
Posted 04 Mar 2023 at 18:09
Have you kept up your pelvic floor exercises?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Mar 2023 at 01:39

Have you had any recent changes to medication either prescription or non prescription?

 I don't know how widely many substances are studied for side effects on men with our modified plumbing arrangements.

In my case I'm 16 months post op but found out the hard way if I take ibuprofen for more than a day it sets me back to about week 6 in the continence recovery process. (incontinence is listed as a rare side effect of ibuprofen). Fortunately I have had very few issues but the first question I ask myself is has anything changed over the last few days?

User
Posted 05 Mar 2023 at 07:01
Ibuprofen truly is the devil's painkiller!

Cranberries can effect me too..

User
Posted 05 Mar 2023 at 20:00

Bernster, I can't give an answer to your question but just to say you are not alone. I had SRT seven months after my prostatectomy and at that point I really thought I had got my continence more or less cracked. By the time I had completed the 33 sessions I was back to wearing Tena 2's. It's now four months since RT finished and there's not really been much improvement despite regular pelvic floor exercises. I have an appointment with my Onco at the end of this month and I will be asking what the prospects are for any improvement in continence. If I get any useful information I will feed it back.

User
Posted 06 Mar 2023 at 19:30

Originally Posted by: Online Community Member
Have you kept up your pelvic floor exercises?

 

To be honest, no! Perhaps I should get back to them...

User
Posted 06 Mar 2023 at 19:32

Originally Posted by: Online Community Member

Have you had any recent changes to medication either prescription or non prescription?

 I don't know how widely many substances are studied for side effects on men with our modified plumbing arrangements.

In my case I'm 16 months post op but found out the hard way if I take ibuprofen for more than a day it sets me back to about week 6 in the continence recovery process. (incontinence is listed as a rare side effect of ibuprofen). Fortunately I have had very few issues but the first question I ask myself is has anything changed over the last few days?

 

None, apart from leaving of my pelvic floor exercises.

User
Posted 28 Jul 2023 at 23:00

Incontinence getting worse - now using 2 or 3 heavy pads a day. Not really a problem at night. I have asked for an appointment with my urologist but I've already waited about 4 weeks.

I had a RARP in Feb 2021 and salvage RT in May 2022. My last PSA result was undetectable, and my next blood test is December 2023.

Can the return  of the incontinence, mean a return of my cancer, or something less sinister? Is it an after-effect of the RT?

Not sure what to do about it as I'm having to wait ages for an appointment with NHS Cancer Team.

I started back doing regular pelvic floor exercises some months ago, but that seems to do nothing for me.

User
Posted 29 Jul 2023 at 01:13
I don't think you need a urologist - it will only delay things. You would be better asking for a referral to the incontinence clinic or a physiotherapist who knows about incontinence
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jul 2023 at 09:10
Thank you, Lyn, for your advice and quick response.

You really are an asset to this site.

User
Posted 29 Jul 2023 at 16:30
Interesting thread. I too had reasonable continence (1 pad/day) before SRT but it has worsened since. I rather assumed it was due to RT-related inflammation upsetting a sphincter that was already somewhat unreliable. That is still possible. This week I had a sigmoidoscopy for a routine check of my rectum after previously removed large polyp, and it was clear that there were still signs of post-RT inflammation on the rectum wall, so there could easily be effects on the surviving urinary sphincter.

However the comment about ibuprofen raises another possible cause. For quite a few months now I have been struggling with a sore shoulder (not sure what caused it, but it seems like a pulled muscle) and have been taking ibuprofen as the only analgesic that seems to have much effect. Maybe that is my problem, certainly I am more sensitive than before SRT to other stimulants like coffee with caffeine. Perhaps I should try paracetamol again, even if I need to take more tablets than of ibuprofen.

User
Posted 29 Jul 2023 at 21:04

Hi Bernster,

Sorry for your predicament.  I haven't had Radiotherapy, but did have severe incontinence after prostatectomy.  As Lyn has suggested, a referral to a Pelvic Floor Physiotherapist or the Incontinence Team might be helpful.  (I had both).  The Pelvic Floor Physiotherapist can check if you're doing the exercises correctly and can also test the strength of your pelvic floor muscles (via a digital rectal examination).  I continue to do the pelvic floor exercises and daily walking, but have added Pilates and Yoga and, taken together, they do seem to have made a big difference.  (Of course, it's possible that it is just a coincidence and it would have improved in it's own good time, but I doubt it).

Best wishes,

JedSee.

 
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