
Improving care for people with MS through menopause and beyond
Researchers from Queen Mary University of London and the UK MS Register are investigating the impact of menopause in people with MS. PhD student Imogen Collier and two people with MS involved in the study told us why this research is so important.
Imogen – PhD student
Most women with MS will go through menopause at some point after their MS diagnosis. Despite this, we have a lot to learn about how menopause might impact people with MS.
More and more MS researchers are turning their attention to menopause, which is fantastic! But the perspectives of people with MS have been missing from most studies so far. So we designed a study looking at information from people with MS, rather than at scans or medical tests.
We’re asking people with MS to answer a questionnaire about menopause. We’ll look at their answers alongside information about their MS to try to find out:
- Whether menopause impacts MS
- What participants’ experiences of managing menopause symptoms, looking for support, and interacting with health professionals are like
A huge thank you to everyone who has taken part – we’ve had a brilliant response so far. If you haven’t taken part yet, please consider giving it a go. The questionnaire takes 10 – 15 minutes and people with MS from all stages of life (before, during and after menopause) can complete it.
Maria – Patient and Public Involvement representative
I was diagnosed with relapsing remitting MS in 2019. After getting over the initial shock and coming to terms with living with the condition, I'm now noticing changes in my MS going through the menopause. Many symptoms overlap and it’s not always easy to navigate what’s happening.
My symptoms have disrupted my personal and professional life and affected my health. Some of the issues I’ve experienced around menopause are difficulty sleeping, intolerance to heat, weight gain, joint pain and brain fog. These problems feel similar to my MS symptoms and can make them feel worse. Finding ways to manage menopause could help with MS symptoms too.
I was surprised about the lack of information available on MS and menopause, considering MS is two to three times more common in women. So, for me, taking part in MS and menopause research was an easy choice to make. I would encourage any woman who has MS to take part in the UK MS Register questionnaire. Your answers will help to improve care and will be invaluable for future generations.
Úna – Patient and Public Involvement representative
I attended a focus group to help design this study. There were women with MS from all over the UK there. Everyone had either been through menopause or were going through it at the time. We talked about our experiences and about the important questions we thought researchers should focus on.
I was amazed to hear about at the different experiences that everybody had. I found our discussions really interesting and it was reassuring to hear some experiences that mirrored my own.
My own menopause happened quite late. I was around age 59 or 60 before I noticed any changes. I remember the line between MS and menopause symptoms feeling quite blurred. It was really hard to tell what was what. Things like brain fog and fatigue could have been down to either. Hot flushes interrupted my sleep and made me even more fatigued than usual the next day. I would think “Is that MS? Or is it just because I’d had a really bad night’s sleep?”.
By taking part in this study you will be helping to improve the knowledge of medical and nursing staff who advise and support people with MS. And also your own knowledge as a person with MS who might go through the menopause. This is really valuable.
How to take part in the study
If you haven't already, you'll need to join the UK MS Register to take part.
You can then log into your account and find the questionnaire under 'Questionnaires to Do Now'.
There's no age limit, and you don't have to have been, or be going through menopause. The questionnaire should take around 10 – 15 minutes.