Embarrassing question

Has anyone else with Cerebellum Ataxia been experiencing incontinence? It’s very embarrassing and I don’t know what to do Is there a link between ataxia and incontinence? Thank you!

Urinary incontinence is actually not unusual. Frequency is common.

I’ve always had the urge to go frequently but been able to wait if necessary. Now, if I wait too long, I make it just in time🙄

Botox injections are thought to help in many cases.
Kegel exercises, similar to pelvic floor after childbirth can help. Kegel can also be taught to men.
Occasionally, self catheterisation is taught.

Don’t just put up with this, definitely ask your Doctor for advice :slightly_smiling_face:xB

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Thank you, Beryl!
I have been suffering from constipation/incontinence for years but most doctors don’t believe theres a link between that and CA, although I had who did. I tried kegels (didn’t work), never heard of botox for that. I will research it. Thank you!

This site is so useful! Someone posted info. that they have found bowel/bladder incontinence to be symptom of Sporadic Ataxia type of CA.

I have had this problem for the past year. Most times I make it to the bedpan but sometimes I don’t. It’s very annoying. My balance is too bad for me to use a commode.

I have a hyperactive bladder ( I have the urgency). I’ve been taking oxybutynin for years. Definitely notice a difference when I don’t take it. Not sure if it’s link to my CSA.

Kay2-this is kind of embarrassing, but heard that meds that help urinary incontinence, increase constipation or fecal incontinence. have you found this with your meds? Thank you!

No other problems. I do get thirsty which makes me drink more water.

I went to my doctor today, that was one reason, his diagnosis was my prostate caused my problems because of my age. I am freezing all the time and tried to get apt with endocrinologist, I was told my numbers are perfect. The thyroid people say the numbers should be no more than 3 and mine came back 4+ and I called him on the numbers and he did not like that, he said the reason is I am taking 1 cannabis cookie every night I cannot believe this HMO I am stuck with.

Hi Kay - I notice you call your ataxia CSA - is this different from SCA?

C is Cerebero, S is Spino, and A is Ataxia. SCA is Spino Cerebro ataxia and CSA is Cerebrospino Ataxia. Never understood why we call it SCA.

SCA = Spinocerebellar Ataxia :slightly_smiling_face:xB

Thanks so Kay there is no difference then between SCA and CSA?

I may have to ask the doctor about this problem. Today is one of those days where I can’t seem to stop going. I don’t have this problem every day. Not sure what’s going on.

I never thought incontinence could be related to my ataxia, but I know that I change my panties 1 to 2 times a day because I leak. I am too embarrassed to talk to my doctor, I do not think she will understand: the last time I mentioned this, I was told to do the kegel exercises…they did not work. I started to use panty-liners during the daytime to save laundry and embarrassment.


I found my old doctor to not understand this too-it’s a real problem and kegels are ineffective for me too. I know it is a symptom of MSA. I don’t know what else but I bet there is a correlation somehow. Pantyliners are fine for a short time but not long term for me.

Amazon cells many brands of adult diapers. It’s much better than changing patties several times a day. I don’t mind them at all.

Ah yeah. Ever since my brain stem stroke. I just can’t hold it. If I don’t pay attention to the emergence of the urge, I can’t stop. I have an adult diaper and a change of underwear in my purse.

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I stopped Oxybutynin just after I read the article around March 14th this year. Something about a link to dementia. I started Mybertiq (spelling?) plus I’m going to the Urologist again to go over options. I was told that the incontinence maybe related to Ataxia but if there is something in the meantime too help, I’m doing it, but with the Urologist’
s advice.

Ica:I heard that Myzbertiq helped with urinary incontinence but increased constipation/fecal incontinence. Please let me know your experience with this drug. Thank you.