I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Urge incontinence post prostatectomy

Email this conversation Print this conversation
User
Posted 28 Nov 2024 at 17:33

6 months from RP. Stress incontinence now thankfully in the past, even when running. Thanks Kegels (=Pelvic Floor Exercises). However, urge incontinence still an issue. 

A little background:

# I did have some urge incontinence for a many years before RP, but this is worse.

# As I did before RP I don't have to visit the loo overnight and can void 500-700ml in the morning, so the issue is being aware of the messages I'm getting from my bladder, not its capacity.

Years ago I was told I had an overactive bladder, which I managed fine, most of the time. However, now with one sphincter fewer the urge is not so easily contained and 'accidents' happen. If I'm sitting I can generally hold up to 400ml, but when up and about I can have problems with as little as 250ml. Then it can be a bit of a rush.

I did not get the time to ask my consultant at my 6 monthly about this issue, so here are a few questions, that I'd be grateful for your comments:

# Will Kegels help. They cleared up stress incontinence nicely, even when exercising vigorously. But if I keep doing them (currently 3 times a day) will I expect to see improvements in the urgency?

# Since my RP, because I emptied my bladder before doing my Kegels and as I was doing them up to 6 times a day, I suspect my bladder got 'lazy' as it was never really getting full - except overnight when I wasn't thinking of it. So I'm assuming training and Kegels, combined, will improve my control. What have others been told or actually experienced?

# And a point about Kegels, can you do them too much? I know you can get issues with the exercises if you do too much too quickly, but I'm thinking here more about there being any risk of continuing the exercises in the false hope of improving the urge incontinence and perhaps developing my pelvic floor muscles until they are too developed?

# The above question brings me to ask, once you've regained incontinence control and the Kegels are done for maintenance only, what constitutes maintenance? Once a day? Twice a day? Once a week? I have no idea.

Many thanks for any advice/suggestions/help.

Barry

User
Posted 28 Nov 2024 at 19:46

Hi Barry, 

This works for me:

I'm five years post op and two years post salvage radiotherapy. I think it's down to personal preference but I do them twice a day for maintenance and occasionally I do a couple while driving. Since SRT, I sometimes get the urge to pee, so rather than rushing to the toilet I clench and hold until the urge passes. Then 10~20 minutes later I'll go to the toilet to empty my bladder. 

Good luck, 

Kev.

User
Posted 28 Nov 2024 at 20:48

Thanks Kev. I know I need to concentrate on the training now and it's helpful to get a feeling for your maintenance regime.

As we do, I took a look at your profile. After a couple of undetectables I'm trying to get my head into the not-having-to-have-any-salvage mindset. I see you did have to have radiation treatment and I note your timescale after your RP and your data. As mine had progressed a little further than yours, creeping into T3a, I know in my heart that my nomogram giving me a 1in3 chance of also needing radiotherapy is something I have to live with. It must have come as quite a blow to you with a low PSA and T2 to need salvage radiotherapy as your data would not have put you at especially high risk, as I understand. Such is life with this disease. Pleased for you that the treatment seems to work. 

User
Posted 29 Nov 2024 at 08:57

Hi Barry, 

I think having a pragmatic approach is a good thing. There are plenty of guys with T3a on this site who are having a good run of undetectables so try not to worry. And if you do see an increase, you'll have plenty of time and there will be treatment options. 

Cheers, 

Kev.

Show Most Thanked Posts
User
Posted 28 Nov 2024 at 19:46

Hi Barry, 

This works for me:

I'm five years post op and two years post salvage radiotherapy. I think it's down to personal preference but I do them twice a day for maintenance and occasionally I do a couple while driving. Since SRT, I sometimes get the urge to pee, so rather than rushing to the toilet I clench and hold until the urge passes. Then 10~20 minutes later I'll go to the toilet to empty my bladder. 

Good luck, 

Kev.

User
Posted 28 Nov 2024 at 20:48

Thanks Kev. I know I need to concentrate on the training now and it's helpful to get a feeling for your maintenance regime.

As we do, I took a look at your profile. After a couple of undetectables I'm trying to get my head into the not-having-to-have-any-salvage mindset. I see you did have to have radiation treatment and I note your timescale after your RP and your data. As mine had progressed a little further than yours, creeping into T3a, I know in my heart that my nomogram giving me a 1in3 chance of also needing radiotherapy is something I have to live with. It must have come as quite a blow to you with a low PSA and T2 to need salvage radiotherapy as your data would not have put you at especially high risk, as I understand. Such is life with this disease. Pleased for you that the treatment seems to work. 

User
Posted 29 Nov 2024 at 08:57

Hi Barry, 

I think having a pragmatic approach is a good thing. There are plenty of guys with T3a on this site who are having a good run of undetectables so try not to worry. And if you do see an increase, you'll have plenty of time and there will be treatment options. 

Cheers, 

Kev.

User
Posted 29 Nov 2024 at 09:45

Many thanks Kev, for your encouragement.

The majority of days I'm almost at the point of forgetting PC and I'll say to myself that I had PC when the doubts creep in. Works most of the time.

One problem with sites like this, and it's a key point, is those who don't now have any recurrence etc., tend to disappear from the community as they get on with lives, leaving behind those who have flare-ups etc and those who hang around to help others. This distorts the picture. I know this and have to remind myself on those occasions when the doubts try and settle on me.

Hope you stay clear ...

User
Posted 29 Nov 2024 at 09:56

Originally Posted by: Online Community Member
There are plenty of guys with T3a on this site who are having a good run of undetectables so try not to worry.

I'm in that category (touchwood). However, being T3a, Gleason 9 (4+5)  the nonograms only give me 50/50 chance of remaining BCR free after 5 years. In my case, the glass half full or half empty saying is very apt.

I've got a couple of mates who've both had BCR and that both say that it was worse than getting the diagnosis.

I try my hardest to to put the chances of recurrence to the back of my mind but everything 3 months the PSA checks drag it to the front. 😁

 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK