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Incontinence - how long after RARP?

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User
Posted 12 Apr 2024 at 15:16

Hi Guys.  A quick question for those who've had surgery.  Hubby had his RARP three weeks ago with the catheter removed after 7 days.  He is recovering well and his wounds are healing lovely but the incontinence is driving him mad.  He knows it is only early days and he is (and I am making sure he does) doing his PF exercises etc. on a regular basis.  From day one he has been dry at night and now doesn't even wear a pad but wakes up a couple of times during the night and uses the urinal bottle we bought if he can't get to the toilet in time.  He is finding that one day he can feel good, use the toilet when necessary and doesn't leak into the pad whereas another day he almost can't stop peeing and then uses 2 or 3 pads.  This is mostly when we have gone for a walk or when he is up and doing light stuff around the house to stop his boredom.  When he is sitting he hardly leaks onto the pad.  From reading this forum I keep telling him its normal and that it will take time but he is finding it very frustrating and excuse the pun is seriously p****d off with it all.  Please tell me this does improve over time. 😐

User
Posted 12 Apr 2024 at 18:15

Hi,

I was almost identical to your husband. I was immediately dry overnight yet inconsistently wet during the day. It started  to settle down about 3 months after the op and by 6/7  months I had complete control during the day.

My CNS stated on average it took most men about 6 months to be continent. However, on here I've seen a huge variation. Some seem to be dry within a week or two and others struggle for years.

I hope he recovers soon, I shared his frustration.

 

User
Posted 12 Apr 2024 at 20:06

What your hubby is experiencing sounds pretty typical in terms of the continence recovery experience. Sitting and lying horizontal generally don't cause leakage from early on. Things should gradually improve with the on your feet activities (getting up from seating, lifting, walking, sneezing, blowing your nose etc). If he is keeping up to the pelvic floor exercises that's great. A lot of us find the Squeezy App helpful to keep in the discipline. I was told to keep doing them for life. I'm now two and a bit years down the line. During the day I wear a Tena Shield to catch the odd dribble. Prolonged walking (for a few hours or more) has been more of an issue for me. I need a large pad when going for a hike. Some manage to get to 100% continence. A lot more like me get to 99%+ continence and while it's not perfect it doesn't stop me doing what I've always done. I wish him good luck with his recovery. Chris

User
Posted 12 Apr 2024 at 15:16

Hi Guys.  A quick question for those who've had surgery.  Hubby had his RARP three weeks ago with the catheter removed after 7 days.  He is recovering well and his wounds are healing lovely but the incontinence is driving him mad.  He knows it is only early days and he is (and I am making sure he does) doing his PF exercises etc. on a regular basis.  From day one he has been dry at night and now doesn't even wear a pad but wakes up a couple of times during the night and uses the urinal bottle we bought if he can't get to the toilet in time.  He is finding that one day he can feel good, use the toilet when necessary and doesn't leak into the pad whereas another day he almost can't stop peeing and then uses 2 or 3 pads.  This is mostly when we have gone for a walk or when he is up and doing light stuff around the house to stop his boredom.  When he is sitting he hardly leaks onto the pad.  From reading this forum I keep telling him its normal and that it will take time but he is finding it very frustrating and excuse the pun is seriously p****d off with it all.  Please tell me this does improve over time. 😐

User
Posted 30 Jul 2024 at 16:22

Originally Posted by: Online Community Member

What your hubby is experiencing sounds pretty typical in terms of the continence recovery experience. Sitting and lying horizontal generally don't cause leakage from early on. Things should gradually improve with the on your feet activities (getting up from seating, lifting, walking, sneezing, blowing your nose etc). If he is keeping up to the pelvic floor exercises that's great. A lot of us find the Squeezy App helpful to keep in the discipline. I was told to keep doing them for life. I'm now two and a bit years down the line. During the day I wear a Tena Shield to catch the odd dribble. Prolonged walking (for a few hours or more) has been more of an issue for me. I need a large pad when going for a hike. Some manage to get to 100% continence. A lot more like me get to 99%+ continence and while it's not perfect it doesn't stop me doing what I've always done. I wish him good luck with his recovery. Chris

Chris, when you are walking are you squeezing or just relaxed? I've had my catheter out for a week now and am trying to get to grips with leakage whilst moving around (I seem to be pretty lucky in that I'm pretty much continent when sitting and lying down). I currently try and squeeze continuously but still leak and haven't had the courage to not squeeze whilst walking to see if there is a difference. Andy

User
Posted 31 Jul 2024 at 09:01

Hi there,

I also had zero control immediately after TWOC. Lying down "helped" although the slightest movement and getting back upright meant instant leakage.  Initially I was very dispirited - I had been doing pelvic floor exercises for a couple of months prior to my op (delayed due the response to covid) and it seemed to have had little effect.

There was gradual improvement over the next few weeks, but I had hoped for better and was very downhearted.

The real step change came about 5-6 weeks post op when I suddenly passed some clot debris after the bladder neck sutures dissolved (took me by surprise!).  All of a sudden I had much better control and that's how it still is 3 years post-op.  I'd call it 98% continence - tea gives me issues and if I'm on the beer I have to be mindful that I may need to hit the loo in a hurry.  Day-to-day I do not need pads at all.  The only time I use them is when I'm out hiking, as fatigue and exertion can lead to the odd drip (it really is just a drip).

Keep up with the PFE and try not to let it get you down (easy to say now I don't have the problem) - things should improve soon, watch out for the clot debris and improvement after it's been passed.

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User
Posted 12 Apr 2024 at 18:15

Hi,

I was almost identical to your husband. I was immediately dry overnight yet inconsistently wet during the day. It started  to settle down about 3 months after the op and by 6/7  months I had complete control during the day.

My CNS stated on average it took most men about 6 months to be continent. However, on here I've seen a huge variation. Some seem to be dry within a week or two and others struggle for years.

I hope he recovers soon, I shared his frustration.

 

User
Posted 12 Apr 2024 at 20:06

What your hubby is experiencing sounds pretty typical in terms of the continence recovery experience. Sitting and lying horizontal generally don't cause leakage from early on. Things should gradually improve with the on your feet activities (getting up from seating, lifting, walking, sneezing, blowing your nose etc). If he is keeping up to the pelvic floor exercises that's great. A lot of us find the Squeezy App helpful to keep in the discipline. I was told to keep doing them for life. I'm now two and a bit years down the line. During the day I wear a Tena Shield to catch the odd dribble. Prolonged walking (for a few hours or more) has been more of an issue for me. I need a large pad when going for a hike. Some manage to get to 100% continence. A lot more like me get to 99%+ continence and while it's not perfect it doesn't stop me doing what I've always done. I wish him good luck with his recovery. Chris

User
Posted 30 Jul 2024 at 16:22

Originally Posted by: Online Community Member

What your hubby is experiencing sounds pretty typical in terms of the continence recovery experience. Sitting and lying horizontal generally don't cause leakage from early on. Things should gradually improve with the on your feet activities (getting up from seating, lifting, walking, sneezing, blowing your nose etc). If he is keeping up to the pelvic floor exercises that's great. A lot of us find the Squeezy App helpful to keep in the discipline. I was told to keep doing them for life. I'm now two and a bit years down the line. During the day I wear a Tena Shield to catch the odd dribble. Prolonged walking (for a few hours or more) has been more of an issue for me. I need a large pad when going for a hike. Some manage to get to 100% continence. A lot more like me get to 99%+ continence and while it's not perfect it doesn't stop me doing what I've always done. I wish him good luck with his recovery. Chris

Chris, when you are walking are you squeezing or just relaxed? I've had my catheter out for a week now and am trying to get to grips with leakage whilst moving around (I seem to be pretty lucky in that I'm pretty much continent when sitting and lying down). I currently try and squeeze continuously but still leak and haven't had the courage to not squeeze whilst walking to see if there is a difference. Andy

User
Posted 30 Jul 2024 at 18:38

Hi Andy. Welcome to the forum.

If you haven't already, reading this may help answer some of your questions.

https://prostatecanceruk.org/prostate-information-and-support/living-with-prostate-cancer/pelvic-floor-muscle-exercises

Best of luck mate.

User
Posted 30 Jul 2024 at 21:03

I was still losing bits of scabs and debris at least six weeks after surgery, so not unusual to be having good and bad days.

Thanks Chris 

User
Posted 30 Jul 2024 at 21:17
Andy, it sounds as if you are doing pretty well just a week after catheter removal.

One of the things we have learned here on the forum is that everyone is different, but for me the sphincter weakness following surgery is most obvious from activities which raise the pressure in the abdomen. Gardening is one, and surprisingly DIY activities like decorating where you use your "core muscles" to maintain position.

But walking can also be a problem, I think there is a temporary raise in pressure with every step. To be honest it is fine near the beginning of the day, but gets worse later on when the muscles get tired. It has got somewhat worse since salvage RT but manageable; last autumn I and my wife walked the Tour du Mont Blanc (early starts!) without problems.

With your progress this early, I would hope that in six months or so most activities are leak-free.

User
Posted 31 Jul 2024 at 09:01

Hi there,

I also had zero control immediately after TWOC. Lying down "helped" although the slightest movement and getting back upright meant instant leakage.  Initially I was very dispirited - I had been doing pelvic floor exercises for a couple of months prior to my op (delayed due the response to covid) and it seemed to have had little effect.

There was gradual improvement over the next few weeks, but I had hoped for better and was very downhearted.

The real step change came about 5-6 weeks post op when I suddenly passed some clot debris after the bladder neck sutures dissolved (took me by surprise!).  All of a sudden I had much better control and that's how it still is 3 years post-op.  I'd call it 98% continence - tea gives me issues and if I'm on the beer I have to be mindful that I may need to hit the loo in a hurry.  Day-to-day I do not need pads at all.  The only time I use them is when I'm out hiking, as fatigue and exertion can lead to the odd drip (it really is just a drip).

Keep up with the PFE and try not to let it get you down (easy to say now I don't have the problem) - things should improve soon, watch out for the clot debris and improvement after it's been passed.

User
Posted 13 Aug 2024 at 08:13

Originally Posted by: Online Community Member

 A lot of us find the Squeezy App helpful to keep in the discipline. 

Hi Chris, is that what the app is actually called?

Dave

 
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