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Incontinence and urge sensation

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User
Posted 28 Mar 2025 at 10:44

Hi all

Mike here, 18 days after having a RALP. I'm 54 and a slim fit mountain biker. I have a very physical job and do basic weight training so overall have a strong core. I started kegels 4 weeks before the op and also had electro stimulation in the rectum which was an experience!!

I was diagnosed on 11 Feb 2025 and then had the op 10march. It's all been a bit of a psychological whirlwind although I kind of knew what was coming after scans in December.

I feel like I am recovering ok from the pain of the op and have good movement now. (Sooo happy when the catheter was removed)

I kind of thought as I was fit that the incontinence side of things wouldn't really be a problem but it is. I know it's early days as I'm only 12 days after catheter removal but I'm finding incontinence scary/worried that it's going to be there forever. I am dry all night luckily but wake up in the night to have a pee but there is no real urge to go. So sometimes I do need to go and there will be 300/400ml other times just a 100ml or less. It's really hard to know when I need to go. Same in the day time. Very little sensation. Does this come back?

In the morning I can wear a really lightweight female pad and just trickle a bit and if I go for a 20 min walk before breakfast I just leak a bit. However if I go for a walk later in the morning the floodgates open.  I have just been for a walk with my partner (who is really supportive fortunately) and it feels like every step I take I constantly leak. In a 40 min walk I used 2 heavy duty pads. I seem to leak a bit more in the evenings

It's hard to enjoy a walk and I am worried that me feeling miserable and down about it is not good for me or my girlfriend). How do you keep positive? I feel like am old man and really tearful at times. 

Thanks, Mike

User
Posted 28 Mar 2025 at 14:35

You are trying to rush your recovery. Be careful you don't overdo it, particularly difficult if you are fit!  Continue doing Kegel exercises - 10 squeezes, three times a day maximum - which should not be overdone, could be counter productive.

 '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 28 Mar 2025 at 18:53

I agree with Pratap, it's early days, you're recovering from major surgery and it takes a while for your body to repair itself. Within a few days you feel great and want to power on through but your body is reminding you to slow down. Try not to get down about the leakage, it should improve as your recovery continues. 

Good luck, 

Kev.

User
Posted 28 Mar 2025 at 20:57

Hi Pablozzz,

As others have said, it is very early days for you.  I leaked like a sieve for the first 4-6 months, and got through 6-8 pads per day, but this gradually tapered off.  But even now (two years post-op) I still use one pad per day.  Hopefully, you will achieve even better results and be pad-free within months.  But do keep doing your Kegel exercises. 

Best wishes,

JedSee.

User
Posted 28 Mar 2025 at 23:08

I am now 10 weeks after the surgery. At your stage I was very similar. Before the surgery I was very fit and active.

What I find was that progress was very slow at the start but gradually got better.

If I had been out and had got very tired the day before I find that that really affected the incontinence in the day following.

on several occasions I've been out for a walk and have ended up with wet clothes which was not great.

But things have improved it is sometimes hard to see day-to-day that there is improvement but week to week there is.

You will get there don't worry too much about it it just takes time.

One thing that I have find that makes a big difference is making certain that I do poos before I go out because I have found that if I have the need to do that it puts a lot of pressure on the bladder and causes a lot of leakage so you don't want to have that feeling and result whilst walking.

I ensure I eat lots of food and veg and fibrous food and what I do is walk around the house for maybe five or more minutes until the urges comes to do the business.

I hope this helps.

 

 

 

User
Posted 28 Mar 2025 at 23:16

Hi Mike

As others have commented you’re still very much in the early stages. Only a few weeks ago I was in the same position, my catheter came out in January and I was completely incontinent. The first few weeks I was getting through several level 3 pads per day, the mornings were fine but as the day progressed I had no control when moving/walking around. I was taking a daily walk and would leak all the way! I gradually upped the kegels when I felt comfortable enough and it is definitely improving. I’m now at 3 months, mostly dry at night and down to one level 1 pad in the day, this is catching the odd squirt when lifting/sneezing/coughing.
I had my post op follow up with the consultant on 4 March and discussed this, I also mentioned that I was going to the toilet more regularly for small amounts to try and reduce the leaking. He prescribed me 4mg Tolterodine to reduce the urge/need to go so regularly and it has definitely helped along with the exercises. 

Don’t get too despondent, I felt the same, this upset me more than the erectile dysfunction but as things improve so does your general wellbeing. I was also very fit and active before the op, but am having to listen to the body and exercising in moderation. Keep positive and hopefully in a few weeks time you’ll feel differently. 

All the best, JP 

User
Posted 29 Mar 2025 at 16:00

Hi

I am 66 and had the RALP on 25th Jan ,Catheter removed after 1 week.

9 weeks post op I am reasonably dry during the night and use 4 or 5 medium pads during the day .

When I am walking or playing golf I tend to leak more .

At my 6 weeks review with my Surgeon he suggested I was using more pads than he would expect at this stage ,although he did then state that obviously some guys will change more frequently to avoid “an accident”.

I have been using the Squeezy app ,which I find acts as my Pelvic Floor exercise PA ,it won’t let you forget.

He said I could increase from 3 sets of 10 long and 10 fast squeezes per day to 5 sets but ensuring they were spaced out equally .

I think it’s important not to overdo it .

We are all different and will be affected by the surgery differently ,don’t stress too much what your experiencing seems pretty normal and from what I have learned on this site and from the published data on the side effects of RALP most of us will regain continence in time.

On a positive note the surgeon did advise me that the Biopsy on my removed prostate showed good margins and the cancer had not escaped ,this puts my incontinence issue in perspective.

Good Luck I hope you have a good outcome and that your incontinence situation improves.

User
Posted 29 Mar 2025 at 17:54

Yes you get a small leak maybe small blood on penis head when pooing etc.

Keep it clean including catheter.

User
Posted 30 Mar 2025 at 14:59

I had my RALP on 9/1/25 and was doing 5 sets of kegels a day using the Squeezy app and got told off by my consultant a month later for over doing them.

He said I should follow what they outline on this site at: https://prostatecanceruk.org/prostate-information-and-support/living-with-prostate-cancer/pelvic-floor-muscle-exercises

User
Posted 30 Mar 2025 at 18:58

Yes, it would feel sore/tender when I performed the lift. I've been ok since cutting it to 3 sessions a day 

User
Posted 07 May 2025 at 14:57

Just for others reading this topic to show that incontinence isn't always inevitable, I was dry by the time I got home from catheter removal which was after 2 weeks in my case. I'm 65, reasonably fit but that's all and 8-10lbs overweight. I asked the urology nurse and she said its down to internal anatomy (specifically membraneous urethral length), weight, fitness and definitely the skill of the surgeon. I realise I must have been very lucky in all of those areas.

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User
Posted 28 Mar 2025 at 14:35

You are trying to rush your recovery. Be careful you don't overdo it, particularly difficult if you are fit!  Continue doing Kegel exercises - 10 squeezes, three times a day maximum - which should not be overdone, could be counter productive.

 '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 28 Mar 2025 at 18:53

I agree with Pratap, it's early days, you're recovering from major surgery and it takes a while for your body to repair itself. Within a few days you feel great and want to power on through but your body is reminding you to slow down. Try not to get down about the leakage, it should improve as your recovery continues. 

Good luck, 

Kev.

User
Posted 28 Mar 2025 at 20:57

Hi Pablozzz,

As others have said, it is very early days for you.  I leaked like a sieve for the first 4-6 months, and got through 6-8 pads per day, but this gradually tapered off.  But even now (two years post-op) I still use one pad per day.  Hopefully, you will achieve even better results and be pad-free within months.  But do keep doing your Kegel exercises. 

Best wishes,

JedSee.

User
Posted 28 Mar 2025 at 23:08

I am now 10 weeks after the surgery. At your stage I was very similar. Before the surgery I was very fit and active.

What I find was that progress was very slow at the start but gradually got better.

If I had been out and had got very tired the day before I find that that really affected the incontinence in the day following.

on several occasions I've been out for a walk and have ended up with wet clothes which was not great.

But things have improved it is sometimes hard to see day-to-day that there is improvement but week to week there is.

You will get there don't worry too much about it it just takes time.

One thing that I have find that makes a big difference is making certain that I do poos before I go out because I have found that if I have the need to do that it puts a lot of pressure on the bladder and causes a lot of leakage so you don't want to have that feeling and result whilst walking.

I ensure I eat lots of food and veg and fibrous food and what I do is walk around the house for maybe five or more minutes until the urges comes to do the business.

I hope this helps.

 

 

 

User
Posted 28 Mar 2025 at 23:16

Hi Mike

As others have commented you’re still very much in the early stages. Only a few weeks ago I was in the same position, my catheter came out in January and I was completely incontinent. The first few weeks I was getting through several level 3 pads per day, the mornings were fine but as the day progressed I had no control when moving/walking around. I was taking a daily walk and would leak all the way! I gradually upped the kegels when I felt comfortable enough and it is definitely improving. I’m now at 3 months, mostly dry at night and down to one level 1 pad in the day, this is catching the odd squirt when lifting/sneezing/coughing.
I had my post op follow up with the consultant on 4 March and discussed this, I also mentioned that I was going to the toilet more regularly for small amounts to try and reduce the leaking. He prescribed me 4mg Tolterodine to reduce the urge/need to go so regularly and it has definitely helped along with the exercises. 

Don’t get too despondent, I felt the same, this upset me more than the erectile dysfunction but as things improve so does your general wellbeing. I was also very fit and active before the op, but am having to listen to the body and exercising in moderation. Keep positive and hopefully in a few weeks time you’ll feel differently. 

All the best, JP 

User
Posted 29 Mar 2025 at 07:37

Thanks so much for your replies. It looks like I need to learn patience with this as it seems to take a while to improve.

With the kegels I was following what the hospital said. 3 times a day:

15 second 'light' kegels x 10

10seconds firm kegels x 10

10 very fast without rest x 10

Then someone recommended a book by Vanitas Rehab a uro rehab specialist. In this there is good advice and a program to follow. 

She suggests kegels 8 times a day 10 kegels of 3 seconds and increasing each week over 10 weeks.

I've been doing this for the last 5 days...is it too much?

User
Posted 29 Mar 2025 at 08:43
I was recommended to use the squeezy app.

It is 10 squeezes each 10 seconds then 5 secs relax then repeat

Plus 10 fast squeezes which are roughly 2 secs squeeze 2 secs relax.

The above done 3 times a day.

Your instructions etc seem excessive.

Can you actually hold a squeeze fully for 15 secs??

Can you do that successfully for every repeat?

If you exhaust the muscles your incontinence will get worse.

I am not a physio..

User
Posted 29 Mar 2025 at 09:43

Thanks Photonow,

The 15 seconds isn't a full squeeze, just a light tensing of the muscles. To be honest sometimes that doesn't feel like it's doing much.

I can do the 10 second ones ok. The fast pulse ones which are 10 fast x 10 I'm sure I end up tapering off towards the end.

I'll have a look at the squeezey app as I don't want to overdo it.....I already have a light ache in the perineum as soon as the catheter came out.

User
Posted 29 Mar 2025 at 16:00

Hi

I am 66 and had the RALP on 25th Jan ,Catheter removed after 1 week.

9 weeks post op I am reasonably dry during the night and use 4 or 5 medium pads during the day .

When I am walking or playing golf I tend to leak more .

At my 6 weeks review with my Surgeon he suggested I was using more pads than he would expect at this stage ,although he did then state that obviously some guys will change more frequently to avoid “an accident”.

I have been using the Squeezy app ,which I find acts as my Pelvic Floor exercise PA ,it won’t let you forget.

He said I could increase from 3 sets of 10 long and 10 fast squeezes per day to 5 sets but ensuring they were spaced out equally .

I think it’s important not to overdo it .

We are all different and will be affected by the surgery differently ,don’t stress too much what your experiencing seems pretty normal and from what I have learned on this site and from the published data on the side effects of RALP most of us will regain continence in time.

On a positive note the surgeon did advise me that the Biopsy on my removed prostate showed good margins and the cancer had not escaped ,this puts my incontinence issue in perspective.

Good Luck I hope you have a good outcome and that your incontinence situation improves.

User
Posted 29 Mar 2025 at 16:39

Hi Swannie,

I see you had your RALP end of Jan and are back playing golf. I had my RALP last Wednesday and have been told minimum 6 weeks for putting and chipping and 8 - 10 weeks for golf proper. One of the guys at my club was back after 4 weeks!!!  I guess it’s very much individual specific but I’m erring on side of caution. 

a more general question to all please? Did you experience leaking with catheter in when going for a poo, farting or going up and down stairs etc???? 

 

User
Posted 29 Mar 2025 at 17:54

Yes you get a small leak maybe small blood on penis head when pooing etc.

Keep it clean including catheter.

User
Posted 30 Mar 2025 at 14:59

I had my RALP on 9/1/25 and was doing 5 sets of kegels a day using the Squeezy app and got told off by my consultant a month later for over doing them.

He said I should follow what they outline on this site at: https://prostatecanceruk.org/prostate-information-and-support/living-with-prostate-cancer/pelvic-floor-muscle-exercises

User
Posted 30 Mar 2025 at 16:15

Thanks Mikekilo

Did you have problems from doing too many?

User
Posted 30 Mar 2025 at 18:58

Yes, it would feel sore/tender when I performed the lift. I've been ok since cutting it to 3 sessions a day 

User
Posted 31 Mar 2025 at 07:59

Yes

just a wee bit though 😂

User
Posted 07 May 2025 at 12:41

I am in this same group: RARP January 15, 2025 catheter removed Jan 29

I am 71 so this likely changes things. I consider myself fit, active etc  at the same time as we age- just like old cars, some of the parts wear out and things take longer to heal

After catheter removal I was very incontinent. However in the weeks following I noticed some improvement in being able to sleep and stay almost dry during the night  (this may have been 2-3-4 weeks)

I now struggle with both stress and urge incontinence

 

the progression goes like this

* dry at night, semi dry at night

* better in the mornings ( drier, less pads less urge and/or stress incontinence)

* as time goes on better longer in the day, less pads each day

However, this is a trend and there is considerable variability

For many men this progression can go from three months to 18 months, some of course have no incontinence issues, some have chronic incontinence

 

I have noticed a need for more research and agreement about all of this especially in terms of treatments

Almost everyone recommends kegels (some do not) however, and I think this is a big deal there is a recognized lack of agreement regarding how many, what type and how often) this is sited in the latest meta-analysis specifically on this issue even the experts in the field recognize a lack of agreement and lack of good efficacy research. Still, it seems a good bet that kegels, bladder re-training, working with a specialist pt ( trained to work with men following prostratectomy) and bio-feedback

it worries me that some professionals continue to advance ten sets a day ( more is better, no pain no gain)

the recommendations seems to be all over the place ( two sets, three sets, five sets, ten second repeats of long kegels only, 20-30 repeats of 2030 second holds (hold as hard as you  can)

some do not recommend the short ones

as patients and in the prostrate community, we should work hard to find out what seems the better recommendations and share experience with one another

I have learned (experiment of one) that

* doing kegels correctly is very important

* too many are definitely counterproductive

* it is very important to not just train, build up bulk and make those muscles stronger and more responsive, it is equally if not more important to allow those muscles to rest, avoid over-training, and go along with some natural progress (listen to my body)

My therapist has me on two workouts a day

one set of progressive kegels (1/3 contraction, 2/3 contractions, full hold for few seconds then back down 2/3 -1/3 then rest)

one set of slower full contractions ( usually 15 seconds hold 15 seconds rest

four sets of ten fast contractions and and rest about two seconds each

 

Besides this, I am doing core strength exercises that incorporate kegels, stretches to help with abdominal space and pelvic floor expansion and rest

I have had one biofeedback session. I am now getting a handheld biofeedback device so I can incorporate this at home. For me, I really do need to keep an eye on form, make sure I am resting pelvic floor muscles (PFM) correctly and the biofeedback helps.

I have heard that others have benefited from the the various electrical stimulation devices exercisers. I am happy for those that benefited from these. However, there is anecdotal research that for some these can be problematic same for the emsella chair. My pt and in a recent consult with a leading urologist in my area, they advise against these techniques. My pt has personally encountered males who had major setbacks because of these. That was enough for me, again if it works for some, great

 

I share all of this in hopes it is helpful to some  I hate incontinence, it has definitely compromised my quality of life. I tend to be optimistic, the cancer seems to be contained now which is great, I tend to believe the incontinence will get better- I had no idea it would be like this but it could take me a year to get better and if it does not there are alternatives. Meanwhile, I want to be as careful as possible that I do everything I can to get better with continence.

 

as a small example, I tried riding my exercise bike after my first month, I kept the workouts short ( 20 minutes hill workout) after three mornings of doing this- I had a major setback in terms of continence. 

I backed off and tried again a few weeks ago ( three months out) I kept the workouts short about 20 minutes, similar results on the night of the third day, major setback, no sleep, little control, major leakage

I really need to take it slow which I hate, but I also hate being incontinent /

Any tips, suggestions, feedback is really appreciated

thanks everyone

I appreciate everyone that is part of this and shares

 

 

User
Posted 07 May 2025 at 14:57

Just for others reading this topic to show that incontinence isn't always inevitable, I was dry by the time I got home from catheter removal which was after 2 weeks in my case. I'm 65, reasonably fit but that's all and 8-10lbs overweight. I asked the urology nurse and she said its down to internal anatomy (specifically membraneous urethral length), weight, fitness and definitely the skill of the surgeon. I realise I must have been very lucky in all of those areas.

 
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