Nighttime

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?

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

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

That was a typo. Should be 200ml

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.

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

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

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.

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.

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. 

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.