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User
Posted 06 May 2018 at 12:27
Hi,

I have finished my treatment, apart from continuing Zoladex, about a year ago.

Some of my symptoms are slowly getting worse, as someone said they would if I chose the radiotherapy / Brachytherapy route.

I am getting up 7 or 8 times a night and am exhausted the following day.

I have just seen a Urologist who said there is nothing he can do about it.

Anyone else coping with this?

Because what with this and the Zoladex side effects I have just had enough.

User
Posted 06 May 2018 at 21:42

Originally Posted by: Online Community Member
Hi Chris

Thanks for replying

I spent 10 days counting and measuring at night and I am passing about 20ml which the Urologist said was ok.

I will definitely research Oxybutynin in old people.

What is SPC?

 

Definitely think it would be worth you asking about bladder retraining. If you are holding more than 20ml during the day but not at night, this is not a mechanical issue - it is your brain waking you up unnecessarily because it is receiving the wrong messages or misreading signals from the bladder.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 06 May 2018 at 18:15

See your GP and ask whether you can try one of the treatments for over-active bladder. Or ask for a referral to bladder clinic where they can test how much you are emptying and retaining, and thus whether it is a medical issue or psychological. If psychological, there may be bladder retraining classes in your area. Have you tried cutting out caffeine, drinking pure cranberry juice, etc?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 May 2018 at 18:30
Hi Lyn

I have not had caffeine for 18 months now. I have not tried cranberry but I’m thinking all of these things will only make a small difference when getting up seven or eight times.

The Urologist said it was bladder damage from the radiotherapy.

He has given me Oxybutynin to try.

I have read lots of things about training yourself and “holding on “ longer. I am not sure how I can hold on when I am sleeping.

Edited by member 06 May 2018 at 20:27  | Reason: Not specified

User
Posted 06 May 2018 at 19:19
Alan

If you try really hard how much urine can you hold in your bladder ? Is the urine clear and do you or did you pass lots of blood clots and debris. I have radiation damage to the bladder and the capacity is around 120 ml with little prospect of it improving. Fortunately I have a permanent SPC so night time visits are not a problem, I have another water infection which greatly increases the frequency, a recent course of antibiotics reduced the frequency. Try the suggestions made by Lyn, anything is worth a try. You could try the conveen sheath system at night, but there is a risk of them leaking. Do you have anyone at you hospitial who actually understands radiation damage ? I don't and I am have to go out of area for help.

I am not on zoladex or anything similar. I was on oxybutinin but came of it following concerns of adverse effects in the elderly, the problem is all the anti spasm drugs have some adverse side effects, I will leave you too research that one yourself, for every negative report you will find a positive one.

Thanks Chris

User
Posted 06 May 2018 at 20:35
Hi Chris

Thanks for replying

I spent 10 days counting and measuring at night and I am passing about 20ml which the Urologist said was ok.

I will definitely research Oxybutynin in old people.

What is SPC?

User
Posted 06 May 2018 at 20:50

Originally Posted by: Online Community Member
Hi,

I have finished my treatment, apart from continuing Zoladex, about a year ago.
Some of my symptoms are slowly getting worse, as someone said they would if I chose the radiotherapy / Brachytherapy route.

I am getting up 7 or 8 times a night and am exhausted the following day.

I have just seen a Urologist who said there is nothing he can do about it.

Anyone else coping with this?

Because what with this and the Zoladex side effects I have just had enough.

 

Evening Alan,

Really sorry to read this last part.

I have no experience of what you are going through.  But, on the practical side, I wonder if there isn't a way in which you could at least get a good nights sleep or two?

If I were going through what through what you are going through, I might be inclined to at least seek respite from one of the issues?

Have you considered fitting a Conveen "uri-sheath" at night, connected to a bag?  Conveen is like a condom, with a spout at the end which links to a tube which goes to a bag, like a catheter bag.  You pee as and when in the night, but sleep through.   

At least you may get some uninterrupted sleep.  Worked for me when I was struggling with bladder control.

The treatment options suggested by the professionals and used by us sufferers don't always work as originally planned, but maybe a bit of creative thinking may give you some respite?

It's not a long term solution, but a short term sleep giver, maybe? 

Worth a try?

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 06 May 2018 at 20:50

site playing up, double post.

 

dave

Edited by member 06 May 2018 at 20:51  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 06 May 2018 at 21:42

Originally Posted by: Online Community Member
Hi Chris

Thanks for replying

I spent 10 days counting and measuring at night and I am passing about 20ml which the Urologist said was ok.

I will definitely research Oxybutynin in old people.

What is SPC?

 

Definitely think it would be worth you asking about bladder retraining. If you are holding more than 20ml during the day but not at night, this is not a mechanical issue - it is your brain waking you up unnecessarily because it is receiving the wrong messages or misreading signals from the bladder.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 May 2018 at 22:05
Alan

SPC is a suprapubic Catheter which goes through the front wall of the pelvic area straight into the bladder.

20ml is about 4 teaspoons.

Are saying you are passing 20ml 7/8 times in the night ? What are you passing during the day.140/160 over night is very little, 200ml 7/8 times a night would seem slightly excessive.

Can you please clarify the amount you are holding and passing, I sometimes struggle to hold more than 50ml but my bladder has shrunk due to RT damage.

Thanks Chris

User
Posted 07 May 2018 at 08:48
Sorry Lyn

That was a typo. Should be 200ml

User
Posted 07 May 2018 at 08:58

have you tried tamsolusin and tolterodine taken together that might help.

User
Posted 07 May 2018 at 09:06

The more I think about it the more I feel I should talk to someone else, but who?

The Urologist said any surgery was out because of the Brachytherapy. He would look with a camera but was loathe to in case he upset it and he said he knew what he would find anyway.

He ignored the burning sensation and occasional blood spots.

I think I will get back to him, ask some more questions and tell him to have a look anyway. There might just be something going on.

User
Posted 07 May 2018 at 09:12

Hi

I have been taking Tamsulosin since last May and have just started Oxybutynin yesterday.

Hope that may help.

User
Posted 07 May 2018 at 15:05
Originally Posted by: Online Community Member

The Urologist said any surgery was out because of the Brachytherapy. He would look with a camera but was loathe to in case he upset it and he said he knew what he would find anyway

Alan have we got the same urologist.

Have you tried the radiotherapy late effects team, if you have one. I think the first step might be to find your bladder capacity. In simple terms they fill your bladder with fluid and measure how much they can get in. There are a number of treatments available for damage to the bladder, that do not involve surgery, you need to find a urologist willing to do it.

Thanks Chris

User
Posted 07 May 2018 at 16:22
Hi Chris

Thanks for answering.

The Urologist I saw was at Ashford hospital. I usually go to St Peter’s hospital, although they are the same trust.

I am waiting for a reply from his secretary to ask him to go ahead with the camera to see what’s going on but I expect him to say he would rather not.

My normal point of contact would be the Urology nurses at St Peters or my Oncologist, who sent me to the Urologist because she thought getting up that much was wrong. My follow up with her is two months time.

Getting up at night has risen from 4/5 to 7/8. I therefore have to assume it will only get worse.

I can’t believe that’s it for the rest of my life, however long that may be.

Really wishing I’d had Prostatectomy!!!!

Edited by member 07 May 2018 at 16:29  | Reason: Not specified

User
Posted 07 May 2018 at 17:02
Alan

Starting with your last comment "Really wishing I’d had Prostatectomy!!!!", have you read my saga ? There are no guarantees surgery would have been any better.

We are a 200 of hundred miles from each other. My urologist had the same attitude as yours. I finished up getting an out of area appointment with a prof in Manchester, due to site rules I will PM you the name of a consultant in London who was recommended as a urologist who deals with radiation damage,my GP got me an appointment with him and the Prof within about Six weeks.

How much do you drink in the evening, because of my catheter I do not worry about how much I drink, over night I generally produce 500-700 mls, on occasions I have done 1400 plus.

Thanks Chris

User
Posted 08 May 2018 at 07:57
Hi Chris

I don’t drink past 20:00

I am not sure what’s going on now. Surely Oxybutynin can’t be a magic answer. But. I have only taken two nights and last night I only got up three times!!!!!!!

Still got the burning and blood spots but three times for me is a miracle!

I think I will go back to him and ask him to look anyway, as otherwise I will always be wondering.

User
Posted 08 May 2018 at 17:46
Hi All

Really great news!!!

Urologist phoned me back and because I responded well to the Oxybutynin, he wants to try Botox injections in the bladder wall

He has high hopes for them. Therefore so have I!!

Keep you updated. Watch this space.

User
Posted 09 May 2018 at 17:22

AlanM, bear in mind that Botox effectiveness is about three months so if it works you'll be undergoing the procedure (the thought of which makes me wince!) regularly. Also, the body can eventually get used to the toxin and fail to respond as you'd like. My wife has been treated with the stuff in delicate places around her face for a decade for dystonia, so I advise this with some experience. Perhaps I should add that over dosing (as she once experienced from a guy no longer employed by the NHS) can leave really nasty side effects, so look for a cautious low staring dose for your treatment and run a mile if your specialist is too gung ho!!!

AC

User
Posted 09 May 2018 at 17:51
Hi AD

I have been reading that it could last up to a year.

I can understand your thoughts, my eyes are watering at the thought of it. :-)

I am hoping that with the Oxybutynin, which is working quite well, the Botox and some bladder training I might get somewhere. If only for a while.

User
Posted 23 Jun 2018 at 18:17

Change of plan since then. Urologist was very blasé about what he would find. 

When I insisted on a cystoscopy he found there was little or no radiotherapy damage. Just a stricture. 

Hoping we are going to fix that. 

From being blasé and knowing beforehand what he was going to find he has moved to very hopeful. Suddenly I like him a lot 🤓

User
Posted 08 Aug 2018 at 22:05

Just an update. 

 

Stricture has been dilated lates and I am doing self catheterisation. 

My 7 times a night has changed to 3 or 4. Sometimes only 2. 

Needless to say I am very pleased. 

 

User
Posted 08 Aug 2018 at 23:01

Good that you have reduced the night time loo visits. I hope things continue to improve.

Ian

User
Posted 08 Aug 2018 at 23:31

Thank you Ian

it is great but I am more exited about the fact that they found “little evidence of radiation damage“ from the  cystoscopy 

I was convinced I was shot to pieces and things would only get worse. 

I am a happy bunny now. 

 
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