Estrogen and RLS

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linli
Posts: 3
Joined: Tue Jul 04, 2017 10:47 am

Estrogen and RLS

Postby linli » Wed Sep 06, 2017 12:27 am

I underwent surgery for endometrial cancer caused by excess estrogen a week ago. Two days after surgery all the horrid RLS issues were gone. And I continue to have relief. To be clear, I am not on any post surgery pain relievers. I do take ropinerole and wear the neupro patch, even so, prior to the surgery I still had excruciating days. Has anyone else experienced relief after a hysterectomy and could excess estrogen be a culprit in exacerbated symptoms?

Polar Bear
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Re: Estrogen and RLS

Postby Polar Bear » Wed Sep 06, 2017 8:29 am

I hope this relief from RLS symptoms keeps up for you.
Having suffered with RLS for 5 years I had a hysterectomy - it made no difference to my RLS either way and the surgery was 28 years ago.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Location: Northwest Territories, Canada

Re: Estrogen and RLS

Postby badnights » Thu Sep 07, 2017 5:00 am

There does seem to be a hormone connection, though. Pregnancy brings on the symptoms, for instance. And mine (and others') are most intense for 2-3 days before my period. Linli I assume you had a total hysterectomy that removed the ovaries? Betty, if your hysterectomy left the ovaries, that might explain the difference. Maybe it's not estrogen but progesterone or some intermediary or some other hormone.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

linli
Posts: 3
Joined: Tue Jul 04, 2017 10:47 am

Re: Estrogen and RLS

Postby linli » Thu Sep 07, 2017 8:47 am

It was a complete hysterectomy. I am almost 70 and went through menopause in my early 50's. As of today, the relief continues. Fingers crossed. It will be interesting to see what my docs have to say at follow up visits.

Polar Bear
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Location: N. Ireland

Re: Estrogen and RLS

Postby Polar Bear » Thu Sep 07, 2017 9:16 am

Yes, I was left with one ovary which went into decline very quickly. A couple of years later tests showed that I had no estrogen of any worth.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Location: Chicago

Re: Estrogen and RLS

Postby ViewsAskew » Thu Sep 07, 2017 8:30 pm

Good news for you! hope it continues, linli.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

linli
Posts: 3
Joined: Tue Jul 04, 2017 10:47 am

Re: Estrogen and RLS

Postby linli » Tue Sep 12, 2017 11:03 pm

Well, the relief stopped on Saturday. I'm right back to the torture we all know too well. It was nice while it lasted. Going to have to break down and try the Gabapentin. Not sure what that's going to be like. I hate having to take more stuff.

badnights
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Re: Estrogen and RLS

Postby badnights » Wed Sep 13, 2017 4:44 am

linli, have you considered the possibility that you're augmenting? You said you take ropinirole and wear the patch - rotigotine/Neupro I assume? Those are both dopamine agonists, either one of which could cause augmentation. It's very common. What doses are you on, and how long have you been taking each medication? Augmentation is more likely the higher the dose and the longer you;ve been on them.

And have you had your ferritin checked? Although labs sometimes say it's "normal" when it's 20 or more, for people with WED/RLS it should be 100 or more. If it's lower, your risk of augmenting is greater.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

yawny
Posts: 238
Joined: Sun Nov 08, 2015 4:20 pm

Re: Estrogen and RLS

Postby yawny » Wed Sep 13, 2017 4:14 pm

Linli, I'm so sorry the relief stopped. This may not relate to you but I've noticed that when I change something like diet, or add in a new supplement or medication, that I'll have an improvement for a few days or more and then I eventually go back to my normal or even have worse symptoms. Almost like the change shakes up my body's routine and then it acclimates. I've seen many people here report benefits of something and veteran members will ask them to report back in a month or more to see if the improvement sticks. Maybe a common occurrence? But there's so much hope and support here amongst us that I know we're all excited to hear of someone getting relief, and we're always excited to hear the details.

Another thing, I'm new to bioidentical hormone treatment just in the past few months and I'm curious if you are doing this also? I started on progesterone treatment and the results have been really good and consistent. Not a complete fix of anything but a huge improvement in my anxiety. At night after I take/apply my medication I get a very calm sleepiness comparable to my pre-RLS days, and as I wake from symptoms during the night I now have the ability to go back to sleep with much more ease than before and without taking more medication. I've learned that we're all estrogen dominant because our environment is full of estrogen and that progesterone can alleviate or fix that estrogen dominance. I don't understand the mechanics of hormones, and this is oversimplification, but I'm wondering if...your surgery removed excess estrogen, you got relief, then estrogen started building up again from other sources that caused your symptoms to start up again?


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