Endometriosis/MS

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Endometriosis/MS

Postby Filmmaker » Mon Apr 11, 2011 11:17 am

Hi
Just wondering how many women here are also afflicted with endometriosis and if you think that excessive oestrigen may also play a role in both MS and endo... Obviously this kind of MS would not apply to men , nor to those whose MS has caused "black holes" types of lesions...
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Postby LR1234 » Mon Apr 11, 2011 12:00 pm

I have Endo too.
Weirdly though when my endo is active my MS is quiet and visa versa.
I think the Oestrogen may even be helpful with our MS.
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Re: Endometriosis/MS

Postby euphoniaa » Mon Apr 11, 2011 1:15 pm

Filmmaker wrote:Hi
Just wondering how many women here are also afflicted with endometriosis and if you think that excessive oestrigen may also play a role in both MS and endo... Obviously this kind of MS would not apply to men , nor to those whose MS has caused "black holes" types of lesions...


Hi Filmmaker,

I'm not sure if the endometriosis had anything to do with my MS, but I had a total hysterectomy 25+ years ago due to endometriosis (had problems since I was 12), and the surgery caused instant, severe menopause & depression. For the next 6 months I tried to avoid any meds (I'm generally medphobic), but for the entire time, the highlight of every single day for me was thinking about being dead. (This is entirely true.) Once I gave in and asked for estrogen, I made a miraculous recovery of my mental and emotional health, spirit & personality.

Since then there have been some studies (I have no links) investigating whether some types of estrogen would benefit MS, since pregnancy seems to improve MS symptoms, with relapses after giving birth. (Feel free to post supporting or dissenting info links here.)

Once I was diagnosed with MS at the age of 52 (after at least 30 years of it) and started researching, I came to believe that I owed much of my strength, attitude, and mobility to the accidental use of estrogen (along with diet & exercise), and my gynecologist agrees. As I always say (whilst stealing an expression), "They'll only take away my estrogen when they pry it out of my cold, dead hands." :)
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Filmmaker » Mon Apr 11, 2011 2:07 pm

Hum, very interesting, so that would mean oestrogens play a protective role to the brain, but then, I don;t understand why:
1-MS and endo are often found together...
2- MS affects way more women than men
3-Pregnancy often sends both into remission
4-age of diagnosis for both conditions is usually between 20 o 40 years old
(supposing that there was no hormonal supplementation or issues before diagnosis of MS)

Or, is it MS that kind of causes endometriosis? let's suppose that the brain, knowing that it needs more oestogen to be protected, sends signals to the ovaries to produce more and more oestrogens (which has the rebound effect of causing endo...)?, hum, that's very interesting...
Please, if anyone has nay idea, your comments are welcome...
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Postby euphoniaa » Mon Apr 11, 2011 2:30 pm

Filmmaker wrote:Hum, very interesting, so that would mean oestrogens play a protective role to the brain.......


Well, I wouldn't say that estrogen protected my brain, since my first MRI at age 52 showed my brain was chock full of MS-specific lesions - too many to count. The estrogen just seemed to have had a beneficial effect on my whole body and general health.

It's been shown that actually MS brain lesions have very little correlation with specific symptoms, disability, relapses, or anything else. Spinal lesions are more likely to cause noticeable disability.

As for me, the day they showed me the jumble of crap inside of my brain and diagnosed MS, was during a time I was feeling the healthiest I had in years, and seemed to be much healthier than most people around me my age. Nothing about MS makes much sense.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Filmmaker » Mon Apr 11, 2011 2:40 pm

wow, euphoniaa, so what symptoms lead to your MS diagnosis if were felling fine?
You are probably right about spinal lesions causing more issues than brain...
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Postby euphoniaa » Mon Apr 11, 2011 2:42 pm

Filmmaker wrote:wow, euphoniaa, so what symptoms lead to your MS diagnosis if were felling fine?
You are probably right about spinal lesions causing more issues than brain...


I had a slight tremor in one finger.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Filmmaker » Mon Apr 11, 2011 3:26 pm

impressive:-)
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Re: Endometriosis/MS

Postby euphoniaa » Sat Apr 16, 2011 5:59 am

euphoniaa wrote: As I always say (whilst stealing an expression), "They'll only take away my estrogen when they pry it out of my cold, dead hands." :)


(Another Totally True Story from My Absurd Life follows)

Ironically, no sooner had I posted this pronouncement of my firm convictions, than I got a message from my prescription mailorder service that my beloved estrogen patch was on backorder from the company and unavailable for at least 6 weeks. Alas!!! They sent me trudging from local pharmacy to local pharmacy this week, cane in hand, in a desperate but futile search...begging, pleading for them to look once again for a misplaced box that might fulfill my needs in the meantime. But no luck.

Since I've also had nasty reactions to the adhesives on all the generic patches I've tried over the years, I called my gynecologist's office to see if they had samples, and could write a new scrip if I find one that doesn't rot my skin. Of course, my fabulous gyno (for 35 years) has just retired and the new one knows nothing about me or my history. They will give me a couple of patches on Monday, but only offered "and then we'll see" and refused to say a new scrip would be forthcoming.

It's too soon for my insurance to cover another office visit. Wonder which of my other docs I can hit up for this?

(With apologies to Filmmaker for hogging the thread. :) )
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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