Guest Blog by member of the PPI Group, The Brain Stormers, Susan Crane
There are 40 symptoms of MS and 36 symptoms of menopause. Remarkably, 20 symptoms of menopause are also symptoms of MS. I’ve had 14 of the MS symptoms and 25 of the menopause symptoms. What joy!
I was diagnosed the Friday before my 40th birthday and I got the menopause at 46. I had plenty of perimenopause symptoms before I finally developed menopause. Because I decided that denial was the best medicine, I didn’t do a lot of research right away after I was diagnosed with MS. Therefore, it was hard to know if the symptoms I had were related to MS or menopause. I attributed everything to menopause but I didn’t realize they were actually also MS symptoms.
It’s ironic that even though ¾ of the people with MS are women, we don’t focus on the MS/menopause links more often. That might be because society in general doesn’t talk about menopause a lot. It’s not a great experience in life so this isn’t a surprise. I happened to work for a women’s health charity that focused a lot on the menopause[1], so it’s possible I know too much about menopause.
There are many frustrations about being menopausal and having MS. Although the great thing about menopause is not having periods anymore, sadly Tena pads will now (probably) be required instead of sanitary products). Unfortunately, menopause leads to hormone changes and mood swings. Now I don’t know if my ill-tempered mood (especially) before dinner is just being ‘hangry’, my menopause or MS. I’ve tried to explain this to my family multiple times, but they don’t seem to get it.
I think neurologists and/or MS nurses need to be trained about the menopause so they can warn their female patients over 40 that this may bring up additional issues. I now take so many supplements for MS and menopause I hardly know which are which. So far I want to believe that the sage leaf, evening primrose oil, turmeric etc that I take help to dissipate my menopause symptoms. My hot flashes are over (mostly) but I still have many other menopausal symptoms. Refreshingly, when I just googled MS and menopause quite a few links appeared. [2] There is plenty of speculation about the links and affects between MS and the menopause, however, as one paper mentioned, it’s a bit of an “evidence free zone”. [1] Even so, there have been a few small studies of women with MS and their experience of the menopause. [2] The main take away from the research is that HRT may help to improve symptoms as it restores oestrogen. Taking HRT is a personal decision and the risks need to be weighed up against the potential improvements. With my family history of breast cancer, I’m not planning to start HRT anytime soon.
Overall, it’s possible to cope with menopause and MS, but one of my mottos can help: information is power. It’s useful to know what to expect so we can be prepared. I’m still ignorant about aspects of MS, but I know a lot more than I did. I got involved in setting up a local group in London (West Central London) and I was elected to the MS Society Board of Trustees – both in 2018. Now I have access to loads of information about MS and I’m much happier for it.
[1] https://www.mdedge.com/endocrinology/article/100253/multiple-sclerosis/cmsc-many-menopausal-and-ms-symptoms-overlap
[2] https://www.mstrust.org.uk/news/ms-and-menopause
[1] Women’s Health Concern, now part of the British Menopause Society. WHC still has lots of very useful fact sheets available online. https://www.womens-health-concern.org/
[2] https://www.mssociety.org.uk/research/latest-research/latest-research-news-and-blogs/spotlight-on-menopause-and-ms
https://www.mstrust.org.uk/a-z/menopause
https://www.healthline.com/health/ms/ms-menopause
Thanks Susan for writing this blog. We hope to work with researchers soon to collect data from participants on this important topic. Watch this space!
