Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 03-25-2018, 08:28 PM #1
simplelife15 simplelife15 is offline
Junior Member
 
Join Date: Sep 2013
Posts: 16
10 yr Member
simplelife15 simplelife15 is offline
Junior Member
 
Join Date: Sep 2013
Posts: 16
10 yr Member
Default Relief from menstrual cycle related flare-ups?

I know both from this forum and another I'm a part of that most women with MG notice flare-ups that correlate with ovulation & menstruation.

I had thymectomy in summer 2014. Took about 18 months before I was mostly medication free. Since then I only have symptoms and have to take pyridostigmine a few days per month, always specific to my menstrual cycle. My primary care is recommending I consult with a gynecologist about hysterectomy with oophorectomy as a means to reduce frequency/intensity of the flare-ups.

Just wondering if anyone has experience with cycle related symptom reduction/relief after oophorectomy?
simplelife15 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (04-04-2018)

advertisement
Old 03-28-2018, 08:35 PM #2
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default

I have read that it's common for women with MG to have flare-ups caused by hormonal shifts in their cycles, and that these flare-ups can be extreme. I'm so sorry you're going through this.

Maybe a gynecologist will encourage you to try a less radical treatment before considering a hysterectomy/oophorectomy, like a hormonal birth control pill that complete suppresses your cycle and keeps your hormone levels even.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (04-04-2018)
Old 03-29-2018, 08:29 AM #3
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
Default

I would certainly avoid the surgery if possible. I went through menopause when I did high dose Cytoxan. The MG just flared up all the time instead. I was so disappointed.

There is plenty of info stating that even post menopausal women who remove the ovaries have increased incidence of dementia and earlier deaths statistically than women who do not. The ovaries secrete small amounts of estrogen even after menopause. Of course there are plenty of women who have to resort to the surgery in cases of cancer or other serious disease. Just think long and hard before you do that for menstrual flare ups.
4-eyes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (04-04-2018)
Old 04-04-2018, 12:21 AM #4
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

What you choose to do is up to you (and your doctor). But I too would caution that the more holistic approach might be better for MG and your long-term overall health.

There are great gynecologists or hormone specialists out there who are recommending alternative treatments for those flare-ups. Managing MG with less activity and more rest during that time might also help!

A hysterectomy, no matter the method, is major surgery. There are risks involved. Is surgery worth the risks? Only you can answer that.

I didn't want my ovaries removed. I wanted those natural hormones! Sometimes gynecologists will just look at a solution, and not what is best for a patient. They can be very clinical about decisions, which does not translate to what those decisions mean to each patient. One gynecologist hadn't even offered me any of the multiple options when I was needing to make my own decisions.

Whatever you do, please research the many alternatives out there. Obviously, you should run any options by a doctor. But here are some ideas.

Women's Health - Premenstrual Syndrome

Premenstrual syndrome (PMS) - Diagnosis and treatment - Mayo Clinic

Trying only one option at a time will help you know which one is working the best for you. I hope you can find a way to relieve your symptoms and reduce their impact on MG!


Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
Old 10-29-2018, 12:52 PM #5
aielwen aielwen is offline
New Member
 
Join Date: Jul 2016
Posts: 6
5 yr Member
aielwen aielwen is offline
New Member
 
Join Date: Jul 2016
Posts: 6
5 yr Member
Default Perhaps continuous birth control (no periods) would work?

Quote:
Originally Posted by simplelife15 View Post
I know both from this forum and another I'm a part of that most women with MG notice flare-ups that correlate with ovulation & menstruation.

I had thymectomy in summer 2014. Took about 18 months before I was mostly medication free. Since then I only have symptoms and have to take pyridostigmine a few days per month, always specific to my menstrual cycle. My primary care is recommending I consult with a gynecologist about hysterectomy with oophorectomy as a means to reduce frequency/intensity of the flare-ups.

Just wondering if anyone has experience with cycle related symptom reduction/relief after oophorectomy?

Please consider whether going on continuous birth control would work as an alternative for you. Having a hysterectomy is a *big* deal for a woman's body. I have been on Generess F/E continuously (no periods) since 2012 for another medical condition. Its a low dose estrogen birth control. I feel like it has really served me having MG as far as helping keep things stable. I was diagnosed with O/MG in September 2015 and Generalized in June 2016. Heat is my biggest problem - my symptoms are still mild as long as I don't get overheated. I really believe being on continuous birth control will help younger women with MG and it isn't permanent like a hysterectomy.
aielwen is offline   Reply With QuoteReply With Quote
Reply

Tags
cycle, flare-ups, menstrual, oophorectomy, related

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 05:02 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.