Hello I’d like to ask the ladies of the group if you have endrometriosis? My daughter suffers with it and we have recently read that it can be related to Ataxia. Many thanks for any input

That's very interested, I have suspected endometriosis as I get severe dysmenorrhea, I think I'm the only woman looking forward to menopause!! Suspected as in I've not had the medical procedure to confirm. I've never heard of the connection but now you mention it, will have a 'google'!

Hi Gail!
I have adhesions around my ovaries. I had my appendix out when I was 5yrs old
and think it relates to the surgery. This causes extreme pain, so I sympathise with
anybody having Endrometriosis. xB

I've never hears of Endometriosis being linked to ataxia...,interesting! I will Google it... ;o)

I have not had endrometriosis, but …
I was having lots of uterus pain/ cramping and fibroid tumors. So doctor and I decided it was time for a hysterectomy ( I am 56), it has been 1.5 weeks out of surgery. I do feel better.
The twist i was not expecting;
My back is no longer hurting and I can lift my ® leg again (not slide)
I asked my obgyn could this correlate with surgery? She said yes very possible my fibroids (4) were very big and 2 were on the back side pushing on spine.
Although I still have balance / Ataxia issues at least my food drop/ drag is gone.

Foot not food

Dear Twirlie Girl, Glad you're doing so well! I had fibroids and had a hysterectomy when I was 38 (I'm 60 now) and although it was pre-ataxia (I started having small symptoms of ataxia at 43, and was diagnosed eleven years ago, at 49), I felt SO much better afterwards! Happy healing!... ;o)

I had fibroid tumors when younger, and had a hysterectomy over 20 yrs ago. The Ataxia showed up in 2011. I never heard anything to indicate that there might be a connection between the two.

I have endometriosis. It was bad when I was younger, and I had laperoscopy and endothermy to burn the worst of it out. The surgeon found fibroids and bowel adhesions.

The surgery didn't make much difference to the pain, but it has downgraded to entirely manageable dysmenorrhea since I've had children.

Interesting to hear it could be connected to ataxia - do you have any reference for that? I'm seeing a neurologist for the first time in a month, so haven't yet been diagnosed with SCA, but am expecting it to happen sooner or later.

Hi Gail,

I had endometriosis at age 34. It got real bad by age 40, so I had a full hysterectomy. It was one of the best things I ever did. I've read that it is connected to gluten problems. I have gluten ataxia. It explained many aliments I had over the years.


Thanks all for your replies, its very interesting and helpful. I’d never heard of a possible connection until my daughter mentioned that she’d read about it. Im recently diagnosed with Ataxia and unsure if any of my three children have it so to read the connection was a bit of a shock for me and her.

As an epidemiologist, I have access to medical journal databases. I could find no reference in the medical literature to any link between endometriosis and ataxia.

Endometriosis occurs when cells from the lining of the uterus start to grow outside the uterus. This most commonly happens in the bowel and other areas close to the uterus, but the cells can travel further afield - I had heard of them growing in the lungs, for example. I can imagine it being theoretically possible for the endometrial tissue to travel to the brain and cause ataxia, but as I say, there's no published evidence of it that I can find.

Endometriosis can run in families, but can also occur independently. If endometriosis did in rare cases cause ataxia, I would be very surprised if it caused ataxia in more than one woman in a family. It's certainly not the cause of ataxia in my family, as if it were my uncle wouldn't have it (men don't get endometriosis, because they don't have uterine tissue).

There's then the alternative question of whether ataxia can cause endometriosis, and I'm not quite sure how it could. Endometriosis usually starts to spread early in a woman's menstrual "career". Apart from some specific types, ataxia doesn't usually present until late in life.

Third, there's the possibility that in some individuals endometriosis and ataxia could both be caused by a third problem - such as gluten intolerance, as mentioned in the previous post. Gluten intolerance appears to have some correlation with endometriosis, and gluten intolerance can cause ataxia.

Last, there's the possibility that endometriosis and ataxia may just happen to be associated - that is, they may each have genetic causes, and the genetic mutations that cause each condition may commonly occur in the same family. Neither causes the other, they're just both there - like blonde hair and blue eyes.

But as I say, that's all speculation on my part, because the medical literature is silent.

Lute, I am not sure this is relevant, but I know that with your background, you will understand this article much better than I do. I found this article by chance while doing research on endometriosis for my daughter who suffers from it. (Not ataxia related in her case). My own ataxia was caused by a cerebellar stroke. No endometriosis for me, thank goodness.


Hi Cicina,

Thanks, I read that one when I was looking for anything linking the two. That paper is talking about endometrial stromal sarcoma (ESS), which is a kind of cancer of the endometrial tissue, rather than endometriosis, which is when endometrial cells grow where they shouldn't. Endometriosis is relatively common (a quick glance puts estimates anywhere between and 1 and 10 per 100 women), whereas ESS is rare (1 - 2 cases per million women).

In that paper, the cancer originally found in the endometrium had been removed, but then reappeared some years later in the brain, causing ataxia. So at its most basic, the paper shows that cancer can cause ataxia, but not that endometriosis can cause ataxia, since it's not talking about endometriosis at all.

Hope that helps!


Yes, Lute, this helps. …Thank you for your explanation. I had thought this sounded like a very rare case…

What I am inclined to think, and this is only using common sense, is that endometriosis is so common these days (or may be has always been, but because of lack of knowledge about it in the past, was just put in the same bag as menstrual cramps) that a few women with ataxia will eventually develop endometriosis - without any connection to ataxia.

Thank you again for clarifying the article, Lute. Take care.

hey guys im the daughter shes on about, thanks for your responses x