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Day 11 following removal - incontinence

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User
Posted 02 May 2022 at 12:18

Hi everyone.  

My husband is day 11 post op (robotic prostatectomy) and day 4 following catheter removal.  I am trying to search for information on urine incontinence as he seems to have lost control totally and once he feels a little urge before he can even get to his feet it is in his pad.  He has been doing pelvic floor squeezes.  We know it is early days and we are not expecting to be anywhere near dry, but wondering if there was anyone who was in a similar situation and has improved at all.

Many thanks

Elaine 

User
Posted 02 May 2022 at 16:15

Hello Elaine,

One question, is your OH dry thru the night?
I am 5 months post surgery, and improvement has been gradual, to the point of nearly dry now.
3 sets of Pelvic floors per day are the recommended quota, you may have read in other posts of the Squeezy app.
Rest is important in these early days. For me bending, kneeling, eg shoe laces, accessing bottom shelf of fridge, etc that activity caused leakage. I think I overdid it early on and that hindered my recovery from incontinence

To answer your question, yes recovery and improvement will come.

P.

P.s. squeezing the pelvic floor muscles when getting up from sitting, and holding the squeeze when the urge for the loo, my help in retraining.

Edited by member 02 May 2022 at 16:20  | Reason: Additions

User
Posted 02 May 2022 at 20:28
Pawmark's point is one which rarely seems mentioned, but certainly happens with me. The sphincter problems can definitely become worse at the end of the day, which I also assume is because what muscle has survived is having to work more and becomes tired. The same can happen after doing something that puts more pressure on it - I can often manage something like gardening with no particular problems but then things get worse towards the end of the day.

It does get better, but varies between people. Some end up totally continent, others like me usually manage with just one pad a day but occasionally a second. It probably took about six months to get down to two pads, and another three months to reach the one pad stage. Stick with it, and celebrate the small improvements!

I don't know whether I am typical but while I initially had a bad response to caffeine, after about a year that became less of a problem (though I avoid it towards the evening when I might be more susceptible). And moderate alcohol is generally OK, though perhaps it is worse for spirit drinkers, however I have once or twice had minor crises at parties where I have lost count of the refilled glasses! Good luck.

User
Posted 02 May 2022 at 13:02

This is very early days, do not worry. I can not speak from direct experience as I had RT, but I have seen many posts like this and most of the replies say things improve a lot over the next few months.

Only a very few people are completely dry post op.

Dave

User
Posted 02 May 2022 at 16:23

Far too early to worry, although I know it is distressing. You don't say for how long he has been doing pelvic floor exercises but done properly. they do take about a month before having much effect. I am just about 6 months post op. with continence arounf 90%. One Tena level 1 pad sees me through most days, if I am not too active. Most of the significant improvement has been over the last 6 weeks or so and frankly, I am green with envy when I read about the lucky guys who achieve continence quickly. May it be that way with you. 4 days from catheter removal is nothing, everything you are experiencing and feeling is normal, if unpleasant. Just remember you are over the major hurdle. 

 

User
Posted 02 May 2022 at 17:12

Thank you P.

He is not dry through the night either, however his pads etc are helping a lot.  Through the day he has had several large leaks, resulting in changes of clothing etc.  Maybe not resting enough, as it is not his usual style to rest, but in his mind he is taking it steady.  

We are reassured and forever hopeful that he will achieve some continence soon!

Elaine

User
Posted 02 May 2022 at 17:28

Elaine, 

Some other tips, if I may, as I remember: caffeine and alcohol may irritate the bladder. Sipping drinks thru the day to maintain fluids, rather than downing a large cup / glass in one go.

Evenings were worst for me, as my muscles became tired, and so i leaked more.

I became discouraged and dispaired at times, but with help and encouragement from members on this forum, and as the body heals an increasing sense of control and thus normality returns.

P 

 

User
Posted 03 May 2022 at 09:42

Hi Elaine. 

One thing to remember is everyone is different. I know someone post RALP who was dry from day one and myself took me approx 3 months to become dry and still will occasionally have a small leak at the end of the day or if I sneeze for example. 

Make sure he keeps up the pelvic floor three times a day and he will leak more in the evening as muscles are getting tired. 

I got disheartened as well and was so fed up with leaking. You just have to go through it for now and stay strong. Make sure you get a continence clinic meeting if possible. I had two sessions which really helped. 

Hope it improves soon! Steve x 

User
Posted 25 Jul 2022 at 23:47

Thank you Rogmartyn for posting your experience, I really appreciate it.  

My husband is slowly showing signs of improvement.  Still using level 3 Tena pads, approx 3 per day, but his PSA level is now very low @ 0.01 so we have a lot to be thankful for.  Its now 3 months since his surgery, so still relatively early days.  He managed to play golf at the weekend and is carrying out his physical job ok, which is amazing.  

He is still doing his Kegel exercises and hopefully his continence will continue to get better.  I didn't realise that wearing a pad could slow down progress, so thank you for pointing that out.  He was doubling up with a pad and pull up, but has recently been confident to wear his normal underwear with a level 3 instead of level 2 pad and that has been far better, and less leakage onto his clothing.

Im so pleased to read your own experience was a quick recovery, that is brilliant for you :)

Take care

Elaine xx 

User
Posted 17 Jan 2023 at 22:26
Steve, it sounds as if you are on a good track towards decent control. Fingers crossed for you over the next weeks and months!
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User
Posted 02 May 2022 at 13:02

This is very early days, do not worry. I can not speak from direct experience as I had RT, but I have seen many posts like this and most of the replies say things improve a lot over the next few months.

Only a very few people are completely dry post op.

Dave

User
Posted 02 May 2022 at 16:15

Hello Elaine,

One question, is your OH dry thru the night?
I am 5 months post surgery, and improvement has been gradual, to the point of nearly dry now.
3 sets of Pelvic floors per day are the recommended quota, you may have read in other posts of the Squeezy app.
Rest is important in these early days. For me bending, kneeling, eg shoe laces, accessing bottom shelf of fridge, etc that activity caused leakage. I think I overdid it early on and that hindered my recovery from incontinence

To answer your question, yes recovery and improvement will come.

P.

P.s. squeezing the pelvic floor muscles when getting up from sitting, and holding the squeeze when the urge for the loo, my help in retraining.

Edited by member 02 May 2022 at 16:20  | Reason: Additions

User
Posted 02 May 2022 at 16:23

Far too early to worry, although I know it is distressing. You don't say for how long he has been doing pelvic floor exercises but done properly. they do take about a month before having much effect. I am just about 6 months post op. with continence arounf 90%. One Tena level 1 pad sees me through most days, if I am not too active. Most of the significant improvement has been over the last 6 weeks or so and frankly, I am green with envy when I read about the lucky guys who achieve continence quickly. May it be that way with you. 4 days from catheter removal is nothing, everything you are experiencing and feeling is normal, if unpleasant. Just remember you are over the major hurdle. 

 

User
Posted 02 May 2022 at 17:06

Thank you Dave.

User
Posted 02 May 2022 at 17:12

Thank you P.

He is not dry through the night either, however his pads etc are helping a lot.  Through the day he has had several large leaks, resulting in changes of clothing etc.  Maybe not resting enough, as it is not his usual style to rest, but in his mind he is taking it steady.  

We are reassured and forever hopeful that he will achieve some continence soon!

Elaine

User
Posted 02 May 2022 at 17:22

Thank you Peter

I really am grateful for yours and others responses.  

I am reassured by the fact you are 6 months ahead and down to 1 pad per day.  Praying my husband is in a similar position at his 6 month stage.  I know we are so fortunate to have had the cancerous prostate removed.  His job is very physical (self employed) and he will need to keep working on his pelvic floor.  (he started early March 22)

Congratulations on how far you have come to achieve 1 pad daily, that is amazing!  and those that are lucky enough to be dry again.. are truly blessed.

Elaine

User
Posted 02 May 2022 at 17:28

Elaine, 

Some other tips, if I may, as I remember: caffeine and alcohol may irritate the bladder. Sipping drinks thru the day to maintain fluids, rather than downing a large cup / glass in one go.

Evenings were worst for me, as my muscles became tired, and so i leaked more.

I became discouraged and dispaired at times, but with help and encouragement from members on this forum, and as the body heals an increasing sense of control and thus normality returns.

P 

 

User
Posted 02 May 2022 at 20:28
Pawmark's point is one which rarely seems mentioned, but certainly happens with me. The sphincter problems can definitely become worse at the end of the day, which I also assume is because what muscle has survived is having to work more and becomes tired. The same can happen after doing something that puts more pressure on it - I can often manage something like gardening with no particular problems but then things get worse towards the end of the day.

It does get better, but varies between people. Some end up totally continent, others like me usually manage with just one pad a day but occasionally a second. It probably took about six months to get down to two pads, and another three months to reach the one pad stage. Stick with it, and celebrate the small improvements!

I don't know whether I am typical but while I initially had a bad response to caffeine, after about a year that became less of a problem (though I avoid it towards the evening when I might be more susceptible). And moderate alcohol is generally OK, though perhaps it is worse for spirit drinkers, however I have once or twice had minor crises at parties where I have lost count of the refilled glasses! Good luck.

User
Posted 02 May 2022 at 20:51

Thank you all so much for your replies.  I have had a busy day and away from my computer for large parts of it, so apologise for late reply.

I am so grateful for your honest guidance and personal experiences.  My husband has cut out alcohol from his diagnosis last November, and is very good at drinking water.. his fluid intake is maintained well, despite 95% of it ending up in his pads.  It is all a learning curve.. He is not a tech fan at all, hence me posting rather than himself, but I am happy to pass on every bit of information I can find to hopefully help him feel 'normal' and confidant to carry on, knowing his current situation is very much to be expected, and he may be quite a while before he sees improvement.  

I wish you all continued improvements whatever stages you are at.. following your stories will become part of my daily education, and hopefully one day I will be able to help reassure others starting on their journey...

Elaine xx 

User
Posted 03 May 2022 at 09:42

Hi Elaine. 

One thing to remember is everyone is different. I know someone post RALP who was dry from day one and myself took me approx 3 months to become dry and still will occasionally have a small leak at the end of the day or if I sneeze for example. 

Make sure he keeps up the pelvic floor three times a day and he will leak more in the evening as muscles are getting tired. 

I got disheartened as well and was so fed up with leaking. You just have to go through it for now and stay strong. Make sure you get a continence clinic meeting if possible. I had two sessions which really helped. 

Hope it improves soon! Steve x 

User
Posted 25 Jul 2022 at 09:28

Elaine,

I was very leaky for the first 2 weeks post catheter removal. I used Tena level 3 pads 2-3 a day. However after the 2nd week the improvements were quite rapid, this I put down to daily walking (2-3 miles) and the proverbial Kegel exercises. I am now in my 14 week since surgery and I am dry over night and pretty much dry throughout the day. Be careful on beer consumption as that can trip you up. I am now pad free 90% of the time but if I go for a beer I wear a pad as a precaution.

Wearing a pad too often when you don’t really need it can also slow you down. Just a thought…

your husband will get there just needs a bit of time and exercise.

ATB

Rogmartyn 

 

Edited by member 25 Jul 2022 at 09:29  | Reason: Spelling

User
Posted 25 Jul 2022 at 23:47

Thank you Rogmartyn for posting your experience, I really appreciate it.  

My husband is slowly showing signs of improvement.  Still using level 3 Tena pads, approx 3 per day, but his PSA level is now very low @ 0.01 so we have a lot to be thankful for.  Its now 3 months since his surgery, so still relatively early days.  He managed to play golf at the weekend and is carrying out his physical job ok, which is amazing.  

He is still doing his Kegel exercises and hopefully his continence will continue to get better.  I didn't realise that wearing a pad could slow down progress, so thank you for pointing that out.  He was doubling up with a pad and pull up, but has recently been confident to wear his normal underwear with a level 3 instead of level 2 pad and that has been far better, and less leakage onto his clothing.

Im so pleased to read your own experience was a quick recovery, that is brilliant for you :)

Take care

Elaine xx 

User
Posted 22 Aug 2022 at 10:45

Elaine,

how is your husband doing now?

KR

Rogmartyn

User
Posted 23 Aug 2022 at 09:41

Good Morning Rogmartyn :)

Thank you for thinking of my husband and asking how he is getting on.

He is doing really well, I think, and he was very pleased to tell me his 'flow' is getting much better... during a conversation we had last Thursday (post op week 17).  He was very excited to tell me he can now use the urinal instead of being seated in a cubicle... which is a huge difference for him, and all taken for granted prior to his surgery, so little by little he is beginning to feel progress is being made in the right direction.

He is still using level 3 Tena for men x 3 per day, but as I have mentioned before, his work is very physical lots of moving and lifting (construction), therefore we believe leaking will be his norm for a while yet, maybe forever.  He still does his Kegel pelvic floor exercises.

We visited London at the weekend, lots of walking and a concert with a couple of beers, all taken in his stride, again he/we are really happy and thankful that was possible :)

How are you? Hoping your journey is still going well!

Kindest wishes

Elaine

User
Posted 17 Jan 2023 at 14:52

Hi,  I'm about the same timescale. Op 14 days ago,RARP, catheter out 6 days. I was dry at night from day 1, and the first 3 days after the catheter were the worst. I take a lot of my water intake whilst seated, no leaks straight away but any walking is impossible without leaks. Also I found doing pelvic excersise whilst lying on my side allowed for better monitoring of the contractions! I think I was drinking too much water to start,  so I'm measuring 200ml every 2 hours and nothing after 9.30. Best wishes.

User
Posted 17 Jan 2023 at 22:26
Steve, it sounds as if you are on a good track towards decent control. Fingers crossed for you over the next weeks and months!
 
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