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User
Posted 22 Sep 2021 at 10:56

A relative was diagnosed with prostate cancer this week he is Gleason 7 but doesn't know the details or his PSA score, he is 75.


A question more for the guys who had RT as a primary treatment. He has been getting up four times a night to visit the toilet, he is going to be having HT and RT. 


Does the frequency of night time visits to the toilet get better, worse or stay the same. 


Thanks Chris


10.56


 

User
Posted 22 Sep 2021 at 12:51
After my first RT yesterday I needed a pee four times in the night, up from the previous 0 or 1 and basically back to the pattern pre diagnosis.
User
Posted 22 Sep 2021 at 13:14

There are around 6 or 7 different reasons to be getting up for a pee many times at night, and they aren't usually related to prostate cancer, so his might well not be connected to the prostate cancer even though he's been diagnosed.


One of the common causes is BPH (enlarged prostate not related to cancer). The hormone therapy will shrink the prostate, and that might bring relief within weeks, even before the RT.


With more detail about his symptoms, it might be possible to narrow down the cause and suggest other solutions. If the cause isn't due to prostate cancer or BPH, then the prostate cancer treatment might not have any effect.


During RT, some urinary symptoms can get worse, but that's temporary.

User
Posted 22 Sep 2021 at 22:07

Originally Posted by: Online Community Member


A question more for the guys who had RT as a primary treatment. He has been getting up four times a night to visit the toilet, he is going to be having HT and RT. 


Does the frequency of night time visits to the toilet get better, worse or stay the same. 


 





During and for a few weeks after treatment, frequency of peeing increases dramatically due to the radiation irritating the bladder. For me this soon settled down (within a month after RT ending) and I was back to my usual once or twice a night.


Cheers,


Chris


 

User
Posted 23 Sep 2021 at 01:27
John didn't experience any night time issues during RT and they included the bottom of his bladder in the zapping! Hopefully the HT will reduce your relative's night time trips to the loo anyway, and then if it does get worse during RT it might only be as bad as it is now.

It might not be anything to do with his prostate of course - have they said that he has an enlarged prostate? Does he have to go to the loo that frequently during the day? He may have poor sleep quality and has got into bad habits - bladder re-training might be worth considering before he gets to the RT stage?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Sep 2021 at 03:56

Prior to HT/RT I was getting up at least once a night but sometimes twice. However, on having RT my nightly visits increased to up to 8 times towards the end of the treatment and then gradually reduced so after a further 2 months I was back to pre RT frequency.


It also meant I had increased frequency during the day and previously exploring where the toilets were between the hospital and where I stayed paid off.

Edited by member 23 Sep 2021 at 03:58  | Reason: Not specified

Barry
User
Posted 23 Sep 2021 at 11:12

Definitely a good idea, Barry! Fortunately for me there was a convenient McDonald's with good loos half way along my journey.


When things were at their worst for me, in the final stages of my RT and shortly afterwards, I was having to pee every 45m all night long and it was pretty exhausting. I bought a plastic urine bottle (Amazon) so I could do so without getting out of bed, and that really helped.  


Chris

Edited by member 23 Sep 2021 at 11:15  | Reason: Not specified

User
Posted 24 Sep 2021 at 20:57
I am still getting up 4 times a night since finishing zoladex in 2016 pelvic exercises don't work just have to put up with it.
User
Posted 26 Sep 2021 at 00:47
It's a dozen years since I had a RP and RT so memory has faded but I do recall it initially resulting in several night time visits, though never more than three or four. Within a few months or maybe a year it had settled down to between 0 and 1, which was only slightly worse than it had been prior to the treatment.

More recently my night time visits have increased to between one and three, sometimes more, but whether this is a long-term outcome of radiation or simple the aging process is a moot point (I'm now 77).

User
Posted 25 Dec 2022 at 01:51
I am sorry for your situation - it seems so wrong that services vary so much around the country.

Have you had your heart checked out recently? Blood pressure okay? Indigestion? Assuming none of those things, it may be worth a visit to a physio; I have an on/off shoulder problem which is to do with how I lay on my arm when asleep. A bit of physio every so often seems to solve it for a while. In terms of flushes, are your bedding / pyjamas definitely pure cotton or linen? Could it be that your winter bedding / nightwear is cotton polyester?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Dec 2022 at 19:18

Lifestooshort, ask your consultant or GP for referral to a pelvic health physiotherapist. They will check/advise on pelvic floor exercises, bladder training, etc, and can refer you on to urology for other procedures if necessary.


By the way, most people can't do bladder training at night as it will just keep you awake. However, the training you do during the day will also improve night time.

User
Posted 27 Dec 2022 at 05:04
I try not to drink anything for at least 3 hours before going to bed and I have found that this helps but as has been said, should I become wide awake in the night, as infrequently happens like now, and get up for a time, there is inevitably the feeling I must pass water before going back to bed and it's hard not to do so.
Barry
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User
Posted 22 Sep 2021 at 12:51
After my first RT yesterday I needed a pee four times in the night, up from the previous 0 or 1 and basically back to the pattern pre diagnosis.
User
Posted 22 Sep 2021 at 13:14

There are around 6 or 7 different reasons to be getting up for a pee many times at night, and they aren't usually related to prostate cancer, so his might well not be connected to the prostate cancer even though he's been diagnosed.


One of the common causes is BPH (enlarged prostate not related to cancer). The hormone therapy will shrink the prostate, and that might bring relief within weeks, even before the RT.


With more detail about his symptoms, it might be possible to narrow down the cause and suggest other solutions. If the cause isn't due to prostate cancer or BPH, then the prostate cancer treatment might not have any effect.


During RT, some urinary symptoms can get worse, but that's temporary.

User
Posted 22 Sep 2021 at 22:07

Originally Posted by: Online Community Member


A question more for the guys who had RT as a primary treatment. He has been getting up four times a night to visit the toilet, he is going to be having HT and RT. 


Does the frequency of night time visits to the toilet get better, worse or stay the same. 


 





During and for a few weeks after treatment, frequency of peeing increases dramatically due to the radiation irritating the bladder. For me this soon settled down (within a month after RT ending) and I was back to my usual once or twice a night.


Cheers,


Chris


 

User
Posted 23 Sep 2021 at 01:27
John didn't experience any night time issues during RT and they included the bottom of his bladder in the zapping! Hopefully the HT will reduce your relative's night time trips to the loo anyway, and then if it does get worse during RT it might only be as bad as it is now.

It might not be anything to do with his prostate of course - have they said that he has an enlarged prostate? Does he have to go to the loo that frequently during the day? He may have poor sleep quality and has got into bad habits - bladder re-training might be worth considering before he gets to the RT stage?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Sep 2021 at 03:56

Prior to HT/RT I was getting up at least once a night but sometimes twice. However, on having RT my nightly visits increased to up to 8 times towards the end of the treatment and then gradually reduced so after a further 2 months I was back to pre RT frequency.


It also meant I had increased frequency during the day and previously exploring where the toilets were between the hospital and where I stayed paid off.

Edited by member 23 Sep 2021 at 03:58  | Reason: Not specified

Barry
User
Posted 23 Sep 2021 at 11:12

Definitely a good idea, Barry! Fortunately for me there was a convenient McDonald's with good loos half way along my journey.


When things were at their worst for me, in the final stages of my RT and shortly afterwards, I was having to pee every 45m all night long and it was pretty exhausting. I bought a plastic urine bottle (Amazon) so I could do so without getting out of bed, and that really helped.  


Chris

Edited by member 23 Sep 2021 at 11:15  | Reason: Not specified

User
Posted 23 Sep 2021 at 18:01

Thanks for your replies, very useful and thanks for the advice.  As far as I have observed his day time habits are not to frequent.


Thanks again Chris.

User
Posted 24 Sep 2021 at 20:57
I am still getting up 4 times a night since finishing zoladex in 2016 pelvic exercises don't work just have to put up with it.
User
Posted 26 Sep 2021 at 00:47
It's a dozen years since I had a RP and RT so memory has faded but I do recall it initially resulting in several night time visits, though never more than three or four. Within a few months or maybe a year it had settled down to between 0 and 1, which was only slightly worse than it had been prior to the treatment.

More recently my night time visits have increased to between one and three, sometimes more, but whether this is a long-term outcome of radiation or simple the aging process is a moot point (I'm now 77).

User
Posted 24 Dec 2022 at 17:00

Since posting the above /\ /\ /\ my night time visits have doubled to around 4 - 5 times nightly. So maybe this IS another side effect of HT? I'm finding that night time hot flushes are waking me up as much as - if not more than - the need to wee. Saying that I now seem to wee as much or more at night as during the day. This I think is the condition known as nocturnal polyuria.


Strangely I'm also finding that my overnight hot flushes are also bringing on arm pain,whereas this does not seem to be the case during the day. So I'm thinking the pain must be something brought on only when laying down? Especially as the pain seems to ease as soon as I get up to go to the bathroom.


Anyone else experiencing similar?

Edited by member 24 Dec 2022 at 17:01  | Reason: Not specified

User
Posted 24 Dec 2022 at 18:27
It sounds to me like your brain is getting muddled signals - a hot flush wakes you, your brain thinks it needs a wee so you get up for a wee just in case. After a while, it becomes a self-perpetuating issue - your brain is convinced that your bladder is full even when it isn't. Do you measure how much you void at each night visit? How does it compare with how much you void at a daytime visit (when feeling fullish)?

It may be worth asking your GP for a referral to the incontinence clinic to a) check bladder capacity and b) see whether bladder retraining might help.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Dec 2022 at 18:36
Just goes to show how like so much else with PCa, it impacts men to varying extent. I didn't find that HT of itself caused more frequent visits to the loo but as I previously stated, with RT added I was severely affected until getting back completely to pre HT visits a couple months after RT ended. This is why I have said to new members on several occasions who anticipate their reaction will be just like somebody they know, that they can't count on a similar experience.
Barry
User
Posted 24 Dec 2022 at 19:08
What Lyn says is true. If you wake up then you think you need a wee. I did this too but nowadays just roll over and all is fine. Just one wee a night about 4am. I’ve been on HT for 2 years and drink quite a bit also. Hasn’t changed anything. I’m quite lucky with hot flushes. They normally only start on waking for that wee at 4.
Happy Xmas
User
Posted 25 Dec 2022 at 01:12

Thanks Lyn, Barry and Chris for replies. I can see the problem is in my brain, the problem is trying to defy it! Well I HAVE successfully told it to stop pestering me on occasion, but more often than not the urge becomes too painful and the need to get back to sleep takes over. Plus I know that getting up will ease my arm pain - so up I get!


(I should perhaps have mentioned previously that I was diagnosed with an overactive bladder (OAB) following a rigid cystoscopy four years ago that went disastrously wrong.).


I did measure overnight voiding a few weeks ago. This revealed I was weeing an average of one to one-and-a-half litres each night, which was more than 50% of my total 24hr output.


As to bladder training, when I asked my my continence nurse a while back she told me the local authority does not support it!


So I then tried to do it myself but after several weeks failed miserably.


Also I have scrupulously performed Kegels for over a decade without any measurable improvement. Following an anal finger test three years ago my continence nurse advised that despite all my efforts, my pelvic floor muscles remain weak. I have tried several medications (Oxybutynin, Tolterodine and Myrabegron), all of which I had to abandon because of more worrying side-effects (palpitations, loss of sleep, bradycardia).


So now I am left with following a bladder / prostate friendly diet as closely as possible and accepting things the way they are.

Edited by member 25 Dec 2022 at 01:21  | Reason: coreections to text.

User
Posted 25 Dec 2022 at 01:51
I am sorry for your situation - it seems so wrong that services vary so much around the country.

Have you had your heart checked out recently? Blood pressure okay? Indigestion? Assuming none of those things, it may be worth a visit to a physio; I have an on/off shoulder problem which is to do with how I lay on my arm when asleep. A bit of physio every so often seems to solve it for a while. In terms of flushes, are your bedding / pyjamas definitely pure cotton or linen? Could it be that your winter bedding / nightwear is cotton polyester?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Dec 2022 at 19:18

Lifestooshort, ask your consultant or GP for referral to a pelvic health physiotherapist. They will check/advise on pelvic floor exercises, bladder training, etc, and can refer you on to urology for other procedures if necessary.


By the way, most people can't do bladder training at night as it will just keep you awake. However, the training you do during the day will also improve night time.

User
Posted 27 Dec 2022 at 01:13

Originally Posted by: Online Community Member
I am sorry for your situation - it seems so wrong that services vary so much around the country.

Have you had your heart checked out recently? Blood pressure okay? Indigestion? Assuming none of those things, it may be worth a visit to a physio; I have an on/off shoulder problem which is to do with how I lay on my arm when asleep. A bit of physio every so often seems to solve it for a while. In terms of flushes, are your bedding / pyjamas definitely pure cotton or linen? Could it be that your winter bedding / nightwear is cotton polyester?


Thank you for these suggestions Lyn. Have just recently started following GP advice around diet and exercise re heart issues. Think bedding is okay but probably need to replace nightwear which is not pure cotton.

User
Posted 27 Dec 2022 at 01:38

Originally Posted by: Online Community Member


Lifestooshort, ask your consultant or GP for referral to a pelvic health physiotherapist. They will check/advise on pelvic floor exercises, bladder training, etc, and can refer you on to urology for other procedures if necessary.


By the way, most people can't do bladder training at night as it will just keep you awake. However, the training you do during the day will also improve night time.



Thanks Andy. I have a consultant appt scheduled for late January so will make a point of asking then, because the last time I asked my GP for physiotherapy he advised that the W/L was something like 12 months or more. 


 

User
Posted 27 Dec 2022 at 05:04
I try not to drink anything for at least 3 hours before going to bed and I have found that this helps but as has been said, should I become wide awake in the night, as infrequently happens like now, and get up for a time, there is inevitably the feeling I must pass water before going back to bed and it's hard not to do so.
Barry
 
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