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Incontinence post OP

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User
Posted 11 May 2025 at 21:50

My husband had his RARP 10 days ago, non nerve sparing.

He is getting a bit concerned about the incontinence. I feel it is very early days yet but he says he has no control and I wanted to ask about how others experienced it. I think he was hoping it would just be a bit of leakage but it is not. 
He has been doing some work from home but was hoping to get back in relatively soon and does not see how he can manage that with the incontinence. 
For those who had no control over urination post OP, how soon did you notice an improvement? I know everyone is different of course. 

User
Posted 11 May 2025 at 21:50

My husband had his RARP 10 days ago, non nerve sparing.

He is getting a bit concerned about the incontinence. I feel it is very early days yet but he says he has no control and I wanted to ask about how others experienced it. I think he was hoping it would just be a bit of leakage but it is not. 
He has been doing some work from home but was hoping to get back in relatively soon and does not see how he can manage that with the incontinence. 
For those who had no control over urination post OP, how soon did you notice an improvement? I know everyone is different of course. 

User
Posted 12 May 2025 at 19:44
Hi Fragen,

I had mine early March. I think I noticed a change after about 5 weeks, I suppose as things start to heal.

It's very up and down and different in each case.

I feel, now at 9 weeks I am improving quite well but still get some leakage. For example, today I went for a dog walk and then a 4km run with no leakage.

Then worked on some flooring in the afternoon with a bit of leakage. Went to the shops and another dog walk later where leakage was quite a bit more where I was tired from the day. It feels manageable though and not like the free flow in the early weeks that I had.

Making sure the kegel exercises are kept up feels like it helps and I'm sure exercise in general helps.

For me, the incontinence has been the worse side effect of the op and is quite depressing. It does get better though and a lot of patience is required!

User
Posted 12 May 2025 at 20:48
Fragen, incontinence was incredibly frustrating when I felt I was beginning to recover from the operation and ought to be able to do more - but was restricted by the need to change pads frequently.

We are all different, but things should get better bit by bit. For me there wasn't a dramatic change at any point, but psychologically I benefitted when I went on a family holiday (booked before I was diagnosed) at about six weeks and discovered I could do most things I wanted despite the need for a pad change several times in the day. The other psychological landmark came at about six months when my pad use reduced to no more than two a day: it was liberating to have the confidence that the one spare pad in my back pocket was going to see me through.

Good luck!

User
Posted 13 May 2025 at 07:41

It’s early days and everyone is different. Some are lucky and regain continence almost immediately. I struggled and for the 1st few weeks post op I could not as they say hold water - what went in came right out again. I was using 9/10 pads a day. I must have been a nightmare to potty train as a toddler! It was the hardest part of the post op recovery and I did despair on occasions I would not recover continence. After 3/4 weeks something clicked and I began to regain control. When I went back to work after 7 weeks I was down to 5 pads a day. After around 9 months I was 1/2 pads a day. Now just over 2 years post op I am 1 pad a day for security- I will have an occasional drip when sneezing laughing exercising etc but other than that I am dry most of the time. It’s something I’ve come to accept and can live with. Best of luck. 

User
Posted 14 May 2025 at 07:12
Took a few months and a referral to the incontinence nurse to sort me out.

It's not a sudden stop either, more of a gradual improvement. The summer following my op I still wore pads to work as a precaution. 10 years later I don't have any leaks at all even the climacturia has sorted itself out.

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User
Posted 12 May 2025 at 19:44
Hi Fragen,

I had mine early March. I think I noticed a change after about 5 weeks, I suppose as things start to heal.

It's very up and down and different in each case.

I feel, now at 9 weeks I am improving quite well but still get some leakage. For example, today I went for a dog walk and then a 4km run with no leakage.

Then worked on some flooring in the afternoon with a bit of leakage. Went to the shops and another dog walk later where leakage was quite a bit more where I was tired from the day. It feels manageable though and not like the free flow in the early weeks that I had.

Making sure the kegel exercises are kept up feels like it helps and I'm sure exercise in general helps.

For me, the incontinence has been the worse side effect of the op and is quite depressing. It does get better though and a lot of patience is required!

User
Posted 12 May 2025 at 20:37

Hi Fragen,

I can echo some of Pablozzz's experiences. 

After the catheter was removed, I was leaking constantly, using 6-8 pads daily.  After about 2 months of consistently doing Kegel exercises, I began to improve, but I am one of the unlucky ones who has never fully recovered continence, even after (almost) 3 years.  I still use 1-2 pads daily.  Of course, you may recover full continence, so do not take my own experiences as indicative of your own likely progress.

You could ask your Urologist to refer you to a Pelvic Floor Physiotherapist (it is a specialism) just to make sure that you are doing the Kegel exercises correctly.

Best wishes,

JedSee

User
Posted 12 May 2025 at 20:48
Fragen, incontinence was incredibly frustrating when I felt I was beginning to recover from the operation and ought to be able to do more - but was restricted by the need to change pads frequently.

We are all different, but things should get better bit by bit. For me there wasn't a dramatic change at any point, but psychologically I benefitted when I went on a family holiday (booked before I was diagnosed) at about six weeks and discovered I could do most things I wanted despite the need for a pad change several times in the day. The other psychological landmark came at about six months when my pad use reduced to no more than two a day: it was liberating to have the confidence that the one spare pad in my back pocket was going to see me through.

Good luck!

User
Posted 13 May 2025 at 07:41

It’s early days and everyone is different. Some are lucky and regain continence almost immediately. I struggled and for the 1st few weeks post op I could not as they say hold water - what went in came right out again. I was using 9/10 pads a day. I must have been a nightmare to potty train as a toddler! It was the hardest part of the post op recovery and I did despair on occasions I would not recover continence. After 3/4 weeks something clicked and I began to regain control. When I went back to work after 7 weeks I was down to 5 pads a day. After around 9 months I was 1/2 pads a day. Now just over 2 years post op I am 1 pad a day for security- I will have an occasional drip when sneezing laughing exercising etc but other than that I am dry most of the time. It’s something I’ve come to accept and can live with. Best of luck. 

User
Posted 14 May 2025 at 07:12
Took a few months and a referral to the incontinence nurse to sort me out.

It's not a sudden stop either, more of a gradual improvement. The summer following my op I still wore pads to work as a precaution. 10 years later I don't have any leaks at all even the climacturia has sorted itself out.

 
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