Ataxia UK
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I have a genetic form of cerebella ataxia type 2 but I'm writing this question really for my dad (I don't suffer from this). So earlier this year my dad had bladder stones removed which were causing him to be basically incontinent. Now, nearly a year down the line (he has recovered fully from his operation) he still has a frequent urge to pee. The doctors are baffled as they can't see anything causing this problem anymore. I was wondering perhaps it is effected by his ataxia? Does anyone else suffer from this??

6 Replies

Hi yes I have this problem. It became so bad that I had to consider where the toilets were every time I went out.

The prob is caused by the nerve which controls the bladder.

Does he pee frequently, and often only a small amount? If so it means he is never emptying his bladder and so is prone to bladder and kidney infections.

Don't panic there is help😊. I take a medication called ceris which has completely cured the problem. It was prescribed by my neurologist.

Ask your gp or neurologist about it

Good luck 🍀😊


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Hi, yes I too have the problem. The frequent urge to pee, and I have to get to the loo NOW! Several months ago I had the same problem with my bowels...

If I am going out I limit my fluid intake considerably beforehand. I still have to pee on arrival at my destination though.

I have not tried Ceris (thanks wibblywobbly for the tip).

I thought it was only me who suffered this condition.


Dunfr what did you do about bowel urgency/frequency? Did it just go away by itself or do you still have it. I always have to know where the bathrooms are and nobody better be occupying it. It's on a moment's notice that I have to go and that I have less than a minute's time. I have to stop what I'm doing and just go. I feel like I am an accident waiting to happen.



I never go out unless "I've been" - my body is getting used to me emptying my bowel in the morning either before or just after breakfast. However, I have been caught out 2-3 times, much later in the day, when I have been away from home - fortunately the toilet cubicles have always been empty. I did have a small accident once - bathroom was 1/2 mile away...

So the urgency is still there ( the need to go without notice) but likelihood of needing to go when I am out is much reduced. Hope this helps.


It's the frequency also. I go and then I have to go again a few minutes later. I evacuate about 3 or more times daily. Sitting helps. But if I'm standing or walking I'm in trouble. Imodium helps.


Yes when i need the toilet i have to go straight away because if i don't accidents happen you know what I mean 😉


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