Multiple Sclerosis Foundation - Menopause, Hormones and MS Progression

This is a topic that has been on my mind for several years. Every now and then, I’d come across an occasional article or blog post on the subject, but I found all of them to be lacking in the research and information I needed. Instead of addressing the effect of menopause and women with MS from a scientific point of view, most articles focused solely on identifying symptoms as they related to menopause and how they affected women with their MS.

Here is a list of some of the most typical overlapping symptoms of MS and menopause women report to be problematic:

I’ve always been curious about hormones and the role they might play in regards to MS and progression. When I was in my late 20s I started researching a bit about estrogen (or the lack thereof). I had been diagnosed with endometriosis and wanted to learn more about it. Basically, endometriosis occurs when tissue normally found in the uterus grows outside the womb. Like a weed, this offensive tissue grows where it’s not wanted, wrapping itself onto other organs and causing intense pain and potential infertility. Medications that are sometimes given to temporarily block the production of estrogen were prescribed for a six month cycle. These are gonadotropin-releasing hormone antagonists. When you take these drugs, estrogen is no longer produced, menstruation stops, and your body assumes it’s supposed to go into menopause. One of the main side effects from taking these drugs are extreme hot flashes and mood swings.

Estrogen is the primary hormone involved here, yet no one understands exactly why endometriosis happens or what causes it. Therefore, there is no cure.

Over several years, I endured severe pain. I had three laparoscopies until in December, 2001, I’d had enough. I was 35 years old, had recently been diagnosed with MS, didn’t have any children, and, although I was married at the time, I knew I wasn’t going to have children. Therefore, without hesitation I knew it was time for a hysterectomy. I was left with one functioning ovary, therefore did not need hormone replacement – yet. To this day I have no regrets about my surgery decision. I knew it would be one less problem for me to have to deal with and one of which I had the power to control for good.

I am now 54 years old and in full-blown menopause. Actually, I’ve probably been in menopause mode for at least five years. There’s no telling how many more years it will be before symptoms subside and I finally reach post-menopause stage. It’s not really too bad, but when the night sweats and hot flashes come it’s as if a bonfire starts in my chest and rises up through my neck and head. It’s not pleasant, but at least it’s temporary. I do take small doses of estradiol (an estrogen replacement) to help tame the symptoms as best I can.

There have been some intriguing developments and new findings in the research of MS and menopause that is quite eye opening. Just last week these findings were presented at the Americas Committee for Treatment and Research in MS Forum (ACTRIMS).

The studies of Dr. Burcu Zeydan, and the Mayo Clinic, show women with MS who have never given birth and those who began early menopause tend to develop progressive forms of the disease. Dr. Zeydan confirmed the role gender has to play regarding developing MS in the first place. We’ve known for some time that more women have MS than men, and we know more women will be diagnosed with RRMS at earlier age, while men with RRMS will show a worsening in disability at a much faster rate.

We’ve also seen and heard that pregnancy may slow disability worsening and reduce relapses. What we have not yet heard about are the findings with women who are going through menopause “potentially speeds up disability worsening,” according to Dr. Zeydan.

Additional observations were noted in patients with SPMS and RRMS. What I found to be quite eye-opening is women who never had a “viable” pregnancy developed SPMS at an earlier age than women who have given birth at least once. Also, the study shows most patients with RRMS do in fact develop SPMS. These statistics and findings match up with my history and current status with MS – I had no children, was diagnosed with RRMS, entered menopause and eventually progressed to SPMS.

Dr. Zeydan emphasizes the importance of their findings to be a turning point as research continues to reveal more information and knowledge about the role estrogen plays in MS, specifically progressive MS.

To read the full report from ACTRIMS 2020 including specifics included in the clinical tests and studies go here.

It needs to be noted that pregnancy and menopause have not been thoroughly studied as it relates to those with progressive MS, yet we are learning so much more as research continues to evolve.