Topic / Blog

MS, the menopause and me

To acknowledge World Menopause Day, 18th October, Helen shares her personal experience and looks to grow the conversation around this topic.

The process of ageing is complicated for anyone living with MS. For women, these complexities are compounded by the equation of female health and beauty with visual stereotypes of young, pre-menopausal bodies. The combination of ageism and misogyny runs deep in western culture - and medicine. 

Twelve years ago, I was frustrated, but not really surprised, when my neurologist was unwilling to explore the messy collision between the onset of the menopause and my symptoms of progressive MS. Was my weight gain, heat sensitivity and increased fatigue due to the menopause … or MS … or both? For me (and for many women with MS), the physical experience of the menopause was difficult to disentangle from my everyday symptoms of MS. Determining cause and effect was even more so. 

In response to my questions, my neurologist muttered something about Hormone Replacement Therapy (HRT) and left it at that.  I had heard that high levels of oestrogen (the female hormone that fluctuates and decreases during the menopause) may have a powerful anti-inflammatory effect on the immune system. But the course of my Primary Progressive MS was not characterised by inflammatory lesions and relapses, so this seemed less relevant to me personally.  

However, I was less aware of the neuro-protective and anti-degenerative effects of oestrogen. Perhaps I should have been. But based on my understanding of the possible benefits and risks of HRT at the time, I felt that it wasn’t for me. Would HRT have slowed the subsequent progression of my MS? Maybe… but it’s impossible to say. 

 Dr Jonathan White sets out the issues for women with MS and their options for managing the menopause in this expert blog. He also raises the question whether it’s advisable to take HRT for its potential benefit in counteracting MS, as opposed to treating specific symptoms of the menopause. For many women, these benefits may go hand in hand. 

Personally, I felt that the menopause was a normal ageing process and preferred to manage it without pharmacological intervention, if I possibly could. I was already committed to a holistic approach to managing my MS,  which did not exclude, but also did not rely on, conventional medicine. Could dietary supplements, controlled breathing, fatigue management and exercise help me now? 

Looking back, I  realise that my experience of the menopause almost coincided with the publication of Professor George Jelinek’s book Overcoming Multiple Sclerosis (2010) and my discovery of the OMS programme. Here was a joined-up, evidence based programme that vindicated and clarified my holistic philosophy. For any woman with MS, it’s encouraging to note that the OMS protocols on vitamin D, diet, exercise and stress reduction all coincide with public health advice on managing the menopause, whether or not you choose HRT too. 

During the next couple of years, I took my herbal remedies and my vitamin D.  My body slowed down, but I muddled through.  

Recently, the interaction between menopause and MS has been the subject of a number of research trials, which you can read about more here. However, as Dr White points out,  research findings to date are not clear cut. If some women experience fewer relapses post menopause, is this because their MS has shifted to a progressive pattern? Is increased disease progression in post-menopausal women different from similar disease progression in ageing men? Can we measure the impact of lifestyle practices (such as having a good level of vitamin D or smoking) on both positive and negative outcomes?  

Over the past decade, the public conversation about the menopause has amplified enormously  - for all women and, increasingly, for women with MS. This in itself is a positive and powerful change. To suffer in silence is to suffer twice over. Greater attention in the general media, as well as in MS resources such as the OMS website, can give us the confidence and language to start an informed discussion about the menopause with our doctors, our families and with each other.  

I have written this from an entirely personal perspective and without any medical expertise, not because I have any answers, but because I still have many questions. That’s not a bad starting point for a conversation. 

Hide commentsShow comments

Alice MacGillivray (not verified)

Bravo Helen! I completely agree that this area needs far more light shed on it. As woman who has had MS since 2001 and 2 years ago was surgically put into menopause as a cancer precaution (i am a BRCA1 carrier and have had breast cancer) I was shocked not to find any supportive information around MS and the menopause when asked about my decision to prophylactically have my ovaries removed. Which I did decide to do despite the lack of information because of the fear of the cancer returning! I am 38 now and plodding along best I can with the MS and recovering from cancer operations - but I really do wonder about the impact the menopause has had on my ms brain some days when I throwing things around the place with uncontrollable limbs, lol! So much so that I have just started an MA in Creative writing with the ambition to get some supportive self experience out there. I am no doctor but having lived with ms for 19 years I feel I have plenty experience to share. Plus I know I know far more than the surgeon who took my ovaries out did! (I had 6 areas of 'Learning' put out across gynecology at Imperial particularly about liaising with the departments that the patient they intend to remove bits of body from is under the care of, in my case Neurology, before removing those bits;)
Sending much love to you Helen

helenblodwen

Dear Alice, thanks so much for your comment - I am very grateful to you for describing your experience here. I didn’t touch on surgical menopause in the blog because it’s outside my personal experience, so your voice is especially welcome because it’s such an important aspect of this. I also strongly relate to your point about us knowing more than our doctors: this really is true and impacts on our health in so many ways. Language is a powerful tool in how we understand, communicate and manage our lives, especially when we are ill. Taking a Creative Writing MA sounds like a wise and wonderful thing to (I am currently taking a short literature course called Writing and Illness with Oxford Uni - it’s made me think much more about the uses and pleasures of language). Good luck with all of this and take great care of yourself. Helen x

Pug (not verified)

I was diagnosed with ms at the age of 42, now 15 years later i have secondary progressive. I have always thought that the menopause caused my ms, rebif injection did not agree with me. All menopause symptoms stopped when i came off it and now in a wheelchair. I am convinved there is a link.

helenblodwen

Dear Pug, thank you so much for your comment. Our experiences of illness and ageing are so hard to disentangle, aren’t they? We need more attention to these possible connections from the medics - and to our voices and lives. Helen x

Jode (not verified)

Thanks Helen. I can absolutely relate to your post. I was lucky to be fairly well with my MS until around 9yrs ago, I too had the confusion of ?perimenopause or MS worsening. It became increasingly difficult to get through my days. Still unclear on the cause, so apart from lifestyle, did I have any other options. I finally relented and tried HRT for 12mnths. I was also improving my efforts with lifestyle as well! So who knows! I felt great! I have been off HRT since March, I had not been keen to continue if not needed. Unfortunately I have found it difficult during recent times to maintain my levels of exercise.....is it HRT or MS?

helenblodwen

Dear Jode, thanks so much for your comment and for sharing your experience of HRT and MS. We’re good at listening to our bodies, aren’t we - but often it’s hard to understand the cause of our experiences - and this year has brought its own challenges to each of us. Take care of yourself. Helen x

Ira (not verified)

Thank you, Helen, I have felt for a long time that there is some inter-relation between female hormones and MS. I'm 58 now and have have MS for at least 28 years. In this period I have gone through the various periods of menstruation, pregnancy, birth, breastfeeding and menopause. And, of course, ageing. I have led a healthy lifestyle all my adult life. My last relapse at 48 coincided with perimenopause and pushed me to start on Copaxone which I'm still taking just to hedge my bets as it doesn't seem to be giving me any problems. My MS has been fairly stable for the last 10 years but I don't think I will ever be able to untangle all the variables. I have only been taking oestrogen creme once a week to assist bladder function as menopause was pretty light for me but have found that as I got older, my life has become easier and more relaxed only working part-time and with fewer family responsibilities. This topic area of MS/Menopause and for many of us also ageing is definitely very complex.

helenblodwen

Dear Ira, thanks so much for commenting. I like your expression ‘untangling all the variables’ - that really sums up my experience too. I also relate to your observation about life getting easier in some ways as we get older, despite these complexities. I feel I could have been more positive in the blog about my post menopausal life - and the freedom that I feel now that I have stopped work and have learned to say ‘no’ 😉
Helen x

Jo (not verified)

Thanks for writing this. I have been discussing the ‘MS Meets Menopause’ drama with anyone who will listen to me for months now and am amazed at how little research or public discussion there is about it. It’s beyond my mere social science background to make any clear determinations about correlation and causality, but all I know is that my vertigo, heavy legs, shakiness and occasional fainting are off the charts at certain times of my increasingly irregular cycle.

helenblodwen

Dear Jo, thanks so much for commenting. As women, we are very attuned to changes in our bodies, aren’t we? Yet the conversation feels very muted... let’s keep on talking about this. Helen x