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Continence issues at night

User
Posted 27 May 2022 at 19:59

Hi all,


I am now just over 4 weeks post RARP and 2 weeks post catheter removal. I am coping okay ( at the moment) during the day, and generally tend to use just one pad which lasts all day and other than the odd dribble when I cough or sneeze, it all seems pretty good. and the pad is generally pretty dry when I take it out at the end of the day. However, the nighttime is a different story - been wearing incontinence pants to bed at night and although I inevitably get up to go for a pee a couple of times in the night, when I check in the morning it looks as if the incontinence pants are pretty heavy so obviously something is happening whilst I am asleep that I am not aware of. Anyone else experienced this? I have been doing the pelvic floor exercises and started doing those several months before my op. I don't use the app but just make a point of doing a set of 10 squeezes each time after emptying my bladder and also at other sporadic times throughout the day when sitting or whenever I think to do them.


I would love to be able to ditch the incontinence pants at night but don't see much chance of that at the moment. Would like to hear how other people have managed to get dry at night. 

User
Posted 29 May 2022 at 03:39

You are not alone!


I had been looking for anyone else in this same situation – everywhere - as we were told the same thing over and over that most people are dry at night and wet in the day. That was not our experience and we were getting worried. I hope my/our experience can give you some peace.


My hubby (50) had his RALP at the end of Dec 2021. He kegeled constantly from diagnosis in Oct til the operation. He did a session of pre-op biofeed back to make sure he was doing them correctly and started doing them again as soon as the cath came out. The first few days/nights were pretty wet.


As I mention timeframes just so you can calculate, we tracked from the time the cath came out instead of from when the surgery was. A 9 day difference.


At about week 3 (from cath) the days got 90% better – usually 1 pad, occasionally 2, but pretty much dry with the standard bend, sneeze, move weird squirt (and this has only gotten better - at 5 months out now he doesn’t use a daily pad – unexpected sneezes, big belly laughs and too much alcohol can still get a little leaky so he will wear a security pad to work or a night out). I will also say he did have 2 daytime out of the blue, completely random, change your clothing leaks sometime in months 3 to 4 – so those can happen.


But the nights… from the get go… the nights were the worst. He went through 2 to 3 nighttime depends pants and was still waking 2 to 3 times to use the restroom every night.


I started weighing his overnights in the morning to have data to track to see if there was progress happening. And there was a slight improvement, followed by a set back – and repeat. It was still 2 to 3 pants a night. But having that "real" data did help him feel a little calmer about it and let him experiment with things he thought might help.


This pattern went on for what felt like forever. It was really getting him down, it was really getting me down - that he was worried and I couldn’t do anything. He tried not drinking 2 hrs, 3 hrs, 5 hours before bed, he tried no coffee, no tea, different sleeping positions – nothing seemed to make a difference. Dry in the day – soaked all night.


Day 46 after cath (55 days since ralp) at his follow up appt, we hoped for some advice, but his surgeon was no help and actually made it worse by saying “Never heard of that pattern before, it's usually the other way round.” Your mind is already grappling with so much uncertainly and change to have the expert tell you ‘I don’t know that’s weird’ – is not comforting and makes you start to go to darker places. His doc is highly rated and very skilled, but his ego and bedside manner... 0_o.  His office has pelvic floor training (we had biofeedback there pre-op) but it was not offered to us post RALP and because of that and what the doc had just said we didn’t feel confident in that PT – so I went on a hunt for something else to help him.


At 59 days since the cath removal (68 since ralp) he went to an independent pelvic floor therapist, who specializes in post-prostectomy therapy in younger men (finding someone who works with pelvic floor issues for men was so hard, it felt like there are so few out there). She has been amazing. She was able to explain to him what had happened internally, in detail with real reasons. She was able to explain how everything he was feeling and experiencing was NORMAL, including the new full bladder signals and leaking and the reason for that and how things will feel and can feel and change as he heals. Hearing he wasn't alone or crazy and the whys was a huge help for him.


He does have a strong pelvic floor muscle and she concluded that his nighttime issue was from him way overdoing the kegals and the muscle being exhausted by night. He told me that she said like any muscle you train have to give it down time. She worked with him on half pressure, light pressure, full pressure, fast and slow exercises and he was told to stop doing them all the time. He was given a limited amount of sets to do daily but to always do a one right before a movement that is a known leak cause.


She was also very strict with his breathing pattern while doing kegals - when you clench/tense you tend to naturally hold your breath - she told him to stop doing that to breathe out while pulling in the kegal. My hubby thinks the relax and breathing were game changers.


At night 65 after the cath removal he had his first dry night. Followed by few nights of wet but much less, down to 1 overnight pant. Night 71 from cath removal (2.5 months from ralp ) was his last wet night (so far). He went a week still wearing night pants but they were dry in the morning. Then he went without and has been without since. He does still wake 1 time a night to use the restroom but not everynight and that seems to be tied to timing of last water before sleeping. 


I hope some of this helps, not finding any one else in a similar situation is a very "what's wrong with me" place to be. 4 weeks is early and having dryer days seems to be a good sign. Try to not worry or get down as I am - as we all are - learning that everything about PCa is a lot longer process than you think you think it is.

User
Posted 10 Jun 2022 at 16:55

Thanks a lot, nice to see I am not alone and not going mad. I am completely dry during the day, however completely wet over-night. It is so bad that it seeped through the diapers 2nights ago. I was beginning to worry, I was bed wetting. I stayed up till past midnight, ensure I did not eat or drink anything after 6pm, I got up at 4am, diapers went, any minute, the bed would have been flooded! I am 3weeks post op and 10days post catheter removal. I guess it is a long game and I have to be patient.

User
Posted 30 May 2022 at 14:48

Thanks so much for this post for I am experiencing the same thing.  Dry all day wet at first bathroom stop after that I stay dry for 2 and 3 time going to bathroom at night   Very very frustrating   Your post definitely let me know I’m not alone.   Also having very weak flow sometimes forcing to go  


Vinny b 

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User
Posted 27 May 2022 at 22:19

Hi,  it's more usual to be dry at night and to be continent for a bit longer each day.  That you get up twice in the night, do you drink much after 8pm. I used to stop drinking before 8pm and didn't have any alcohol for a few months after the op.  Other than that do you sleep on your stomach or a position that might put pressure on your bladder.  Another thing that causes some men to leak is becoming sexually excited.  They're all I can think of.  Regards Peter

User
Posted 29 May 2022 at 03:39

You are not alone!


I had been looking for anyone else in this same situation – everywhere - as we were told the same thing over and over that most people are dry at night and wet in the day. That was not our experience and we were getting worried. I hope my/our experience can give you some peace.


My hubby (50) had his RALP at the end of Dec 2021. He kegeled constantly from diagnosis in Oct til the operation. He did a session of pre-op biofeed back to make sure he was doing them correctly and started doing them again as soon as the cath came out. The first few days/nights were pretty wet.


As I mention timeframes just so you can calculate, we tracked from the time the cath came out instead of from when the surgery was. A 9 day difference.


At about week 3 (from cath) the days got 90% better – usually 1 pad, occasionally 2, but pretty much dry with the standard bend, sneeze, move weird squirt (and this has only gotten better - at 5 months out now he doesn’t use a daily pad – unexpected sneezes, big belly laughs and too much alcohol can still get a little leaky so he will wear a security pad to work or a night out). I will also say he did have 2 daytime out of the blue, completely random, change your clothing leaks sometime in months 3 to 4 – so those can happen.


But the nights… from the get go… the nights were the worst. He went through 2 to 3 nighttime depends pants and was still waking 2 to 3 times to use the restroom every night.


I started weighing his overnights in the morning to have data to track to see if there was progress happening. And there was a slight improvement, followed by a set back – and repeat. It was still 2 to 3 pants a night. But having that "real" data did help him feel a little calmer about it and let him experiment with things he thought might help.


This pattern went on for what felt like forever. It was really getting him down, it was really getting me down - that he was worried and I couldn’t do anything. He tried not drinking 2 hrs, 3 hrs, 5 hours before bed, he tried no coffee, no tea, different sleeping positions – nothing seemed to make a difference. Dry in the day – soaked all night.


Day 46 after cath (55 days since ralp) at his follow up appt, we hoped for some advice, but his surgeon was no help and actually made it worse by saying “Never heard of that pattern before, it's usually the other way round.” Your mind is already grappling with so much uncertainly and change to have the expert tell you ‘I don’t know that’s weird’ – is not comforting and makes you start to go to darker places. His doc is highly rated and very skilled, but his ego and bedside manner... 0_o.  His office has pelvic floor training (we had biofeedback there pre-op) but it was not offered to us post RALP and because of that and what the doc had just said we didn’t feel confident in that PT – so I went on a hunt for something else to help him.


At 59 days since the cath removal (68 since ralp) he went to an independent pelvic floor therapist, who specializes in post-prostectomy therapy in younger men (finding someone who works with pelvic floor issues for men was so hard, it felt like there are so few out there). She has been amazing. She was able to explain to him what had happened internally, in detail with real reasons. She was able to explain how everything he was feeling and experiencing was NORMAL, including the new full bladder signals and leaking and the reason for that and how things will feel and can feel and change as he heals. Hearing he wasn't alone or crazy and the whys was a huge help for him.


He does have a strong pelvic floor muscle and she concluded that his nighttime issue was from him way overdoing the kegals and the muscle being exhausted by night. He told me that she said like any muscle you train have to give it down time. She worked with him on half pressure, light pressure, full pressure, fast and slow exercises and he was told to stop doing them all the time. He was given a limited amount of sets to do daily but to always do a one right before a movement that is a known leak cause.


She was also very strict with his breathing pattern while doing kegals - when you clench/tense you tend to naturally hold your breath - she told him to stop doing that to breathe out while pulling in the kegal. My hubby thinks the relax and breathing were game changers.


At night 65 after the cath removal he had his first dry night. Followed by few nights of wet but much less, down to 1 overnight pant. Night 71 from cath removal (2.5 months from ralp ) was his last wet night (so far). He went a week still wearing night pants but they were dry in the morning. Then he went without and has been without since. He does still wake 1 time a night to use the restroom but not everynight and that seems to be tied to timing of last water before sleeping. 


I hope some of this helps, not finding any one else in a similar situation is a very "what's wrong with me" place to be. 4 weeks is early and having dryer days seems to be a good sign. Try to not worry or get down as I am - as we all are - learning that everything about PCa is a lot longer process than you think you think it is.

User
Posted 30 May 2022 at 14:48

Thanks so much for this post for I am experiencing the same thing.  Dry all day wet at first bathroom stop after that I stay dry for 2 and 3 time going to bathroom at night   Very very frustrating   Your post definitely let me know I’m not alone.   Also having very weak flow sometimes forcing to go  


Vinny b 

User
Posted 10 Jun 2022 at 16:55

Thanks a lot, nice to see I am not alone and not going mad. I am completely dry during the day, however completely wet over-night. It is so bad that it seeped through the diapers 2nights ago. I was beginning to worry, I was bed wetting. I stayed up till past midnight, ensure I did not eat or drink anything after 6pm, I got up at 4am, diapers went, any minute, the bed would have been flooded! I am 3weeks post op and 10days post catheter removal. I guess it is a long game and I have to be patient.

User
Posted 25 Jun 2022 at 00:29

Last night was the first dry night. I set my alarm to wake me up every 1.5hrs till 4am. However, tonight was pretty tired and went to bed by 8pm, forgot to put any pads on on, my wife comes into bed a few hrs after me, did not wake me up, to put some pads on.. woke up at 11pm, the whole bed flooded! Really frustrated, had an argument with my wife.  Not happy with myself!

User
Posted 22 Sep 2022 at 21:44
Thanks all who responded to my post. By way of a follow up now 22nd September so 5 months post op. I still wear a pad during the day and at night but invariably there is now nothing in it. It's more a confidence thing I think after wearing them for so long. Yesterday I went all day without a pad for the first time without any problems. Today and particularly later this afternoon I've been doing some heavy lifting so again put one in just in case but didn't need it. So essentially I consider myself dry again - but wear a pad for confidence. I still wake up in the night perhaps two or three times needing a pee, but again the frequency does depend on fluid intake to a degree. I do find that coffee goes straight through me even the de-caff, which is a shame, as I am a coffee addict. Good luck to you all on your journeys.
User
Posted 15 Feb 2023 at 16:21

Another update, I grudgingly decided to be a bit more intentional with my PFE exercises, the first time since my surgery 8plus months ago. I also decided to not eat or drink at least 3hrs before I go to bed. I do the PFE religiously (slow and fast)*10 4ce daily and noticed I am now dry when I wake up in the mornings. Don't know if it is co-incidence or the PFE now working?

User
Posted 13 Mar 2023 at 16:29
I read surprising research that said that nocturia incidence was the same post-PR as before. Mine improved because I had a massive prostate removed.

If I sleep on my side I am much less likely to want to go than if I sleep on my front and put pressure on my lower abdomen.

With pelvic floor exercises I think doing them at night makes your muscles tired. I tend to do them earlier in the day and group them for 2 or 3 days then rest. As you would with any training.
 
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