“I don’t know why people expect me to whisper about it!” one woman said to me over a Zoom call. “It’s just a bloody hot flush isn’t it? It’s natural. There’s no need to be embarrassed!”.
She is right. I’ve been talking to many women over the last few months about their experiences. Those conversations have been a real joy and a privilege — I’m thankful to everyone to whom I spoke.
Loud and clear, I heard this message: we need to smash the stigma around the menopause.
Women need to talk. Families need to talk. Employers need to talk.
To which I would add — the NHS needs to talk. In doing so, we need to talk in particular about how the menopause impacts women’s mental health and wellbeing.
2020 has been a mind-bendingly weird year. For all of us.
As the UK went into lockdown, alongside all the worries everyone else was experiencing, I found myself reassessing what I wanted to do with my career. After a long time working for charities and with the NHS on mental health policy, I knew I wanted a fresh challenge.
Over the summer holed up in our London flat, I buried myself in books and journal articles. I researched new and emerging health technologies, and learned more about the exciting space of digital therapeutics.
It didn’t take long before I came across a big issue in terms of women’s experiences of treatment and care — perimenopause.
Most women get to the point of menopause (that is, 12 consecutive months without a period) sometime in their 40s or 50s. The average age is 51.
During perimenopause (the period leading up to menopause) and beyond, most women experience symptoms, and for some these are severe.
I read one research paper authored by academics at Yale University, which reviewed 500,000 insurance claims from US women in various stages of menopause. That found 60 per cent of women with significant symptoms were seeking medical attention, but nearly 3 in 4 were left untreated.
Closer to home, according to the CIPD, three out of five UK working women experiencing menopause symptoms find it impacts them at work. 65 per cent say they were less able to concentrate. 58 per cent say they experienced more stress. 30 per cent say they had taken sick leave but only 25 per cent of those women had felt able to tell their manager the real reason.
And it was also apparent that many women were not choosing to take hormone replacement therapy (HRT). A NICE report from 2015 cites a figure of just 17% of women going through the menopausal transition as using it (NB: that statistic comes with a health-warning-klaxon from me — it’s based on a twenty-year-old study — but it’s a decent ballpark figure).
Most of us remember the fall-out from the press coverage of the Women’s Health Initiative study back in 2002, and the tremendous drop in prescriptions for HRT that followed. Undoubtedly, for many women, that continues to influence the choices they’ve made. However, as the North American Menopause Society states, hormone therapy remains the most effective treatment for vasomotor symptoms (hot flushes and night sweats), genitourinary symptoms and has also been shown to prevent bone loss and fracture. For most women, the benefits of HRT will far outweigh any potential risks.
Some women, of course, are not able to take HRT. Prescribing guidelines are such that after five years many GPs will be keen to see their patients come off it, and if you have certain pre-existing health concerns (such as a history of cardiovascular disease) hormone treatment would be normally be contraindicated.
Many women actively choose not to take HRT - a personal choice which must be respected. A comment from one woman I spoke to particularly resonated with me. She said, “the thing is, I’ve been on the [contraceptive] pill my entire adult life — I just didn’t want to fill my system with yet more hormones!”.
So, over the last few months, I’ve been interviewing as many women as I could who have experience of menopause and perimenopause.
I spoke to women from all over the UK. Some had experienced an early menopause in their 30s. Some had a surgical menopause, after experiencing significant health issues. Others had gone through menopause in their 40s and 50s, with all sorts of stories to share.
Whilst everyone had different experiences, the women I spoke to had a lot in common.
There were six major themes running through our conversations.
First was the reality of physical symptoms. The vast majority of women I spoke to talked about physical symptoms that were having a considerable impact on their everyday lives. Most frequently mentioned were hot flushes and night sweats, but sleep problems, skin issues and joint pain were also very common. Managing those symptoms at work could be particularly tricky.
Second was a theme around family and friends. Happily, most women talked about this as a huge positive in their lives — what psychologists would call a “protective factor”. It was heart warming to hear so many women talk about the support they got from friends — some they’d known for many years, and other women they’d met through groups and events like Menopause Cafes. Some women talked about the irritability they experienced (itself another symptom) and genuinely worried about the impact that had on their relationships, particularly at home and with their kids.
The third theme centred around women’s relationships with their significant other. Not everyone I spoke to was in a long-term relationship, but for those who were this was important. Happily, many women talked about the love and support of their partner as being a rock during a time of transition.
Some women were open enough to talk about the impact physical symptoms had on their sex life, as well as loss of libido. I’m really grateful to those women for sharing this with me. For some, this had prompted research about different treatments they could try and taking that information to their GP. It was frustrating to hear that some of those women had felt dismissed in primary care when they’d raised this, as if their intimate life with their partner wasn’t an important issue. That needs to change.
The fourth theme we talked about was work. Some women had got lucky here — they talked about having close female colleagues of similar ages, who were all openly sharing and supporting one another. Some NHS Trusts I spoke to have been organising their own menopause cafe-style events and are developing better policies to support their staff. That was wonderful to hear.
For most women though work was often a source of strife. Some women talked about difficult decisions they’d made to retire early when their physical symptoms had left them too fatigued to continue full-time. Others talked about their wish that employers would show more flexibility around working patterns.
Some of the stories I heard from women about their experiences at work left me feeling angry on their behalf.
Some women reported being subjected to belittling and hurtful comments if they experienced a hot flush at work. One woman described to me a board meeting she had been at, when in the middle of her presentation she started having a “mega hot flush”. The response of a few male colleagues around the table was to crack a few jokes about it. “It really affected my confidence” she said. “I just felt like I’d totally embarrassed myself”.
Others talked about unsupportive management and colleagues, some of whom actively questioned them why they were finding their symptoms so difficult to manage when other women at work were seemingly finding their transition relatively easy. A number of women I spoke to reported quitting their job as a result of lack of employer understanding and support. The emotional impact of that was very clear in a few cases.
The fifth major theme in these conversations was about emotional and mental health. So, so many women talked about this — it came up as frequently as hot flushes.
Some women I spoke to talked about low mood, depression and anxiety. A number of women talked about feelings of anger, irritability and rage.
I spoke to a few women with experience of severe mental illness, who found that their condition became more difficult to manage in menopause — something that subsequently came up in my conversations with professionals and in research.
Most frequently though, was this common message — not universal, but very common — around loss of confidence. We’ve got to do better on this. It can’t be right that so many women are left feeling less confident in themselves at exactly the time in life they are full of wisdom and experience to share.
Lastly, our sixth theme, was about access to care and support. A few women I spoke to had a great experience of the NHS — some had GPs who listened and prescribed what they wanted, a few had managed to access a specialist NHS menopause clinic where they could ask the questions they wanted and formulate a plan.
Most frequently though, that wasn’t what I heard. One message I commonly heard was that GP appointments now were so short, so pressured, that there’s only time to discuss one symptom at a time. That meant some women had spent a few years struggling to connect the dots and understand that their symptoms were related to menopause.
A few women talked about how, exasperated with the NHS, they’d started seeking treatment privately. This was, they said, tremendously expensive and often subject to long waits.
Other women said that their GP either hadn’t been sympathetic towards them, or displayed a lack of knowledge about menopause. Whilst there are plenty of training courses out there for GPs wanting to develop their knowledge in this area, these aren’t compulsory. A couple of women shared that they thought this was institutional sexism at work — that women’s health matters less. I find it hard not to agree with them.
If you’re reading this and are in the NHS, or are one of my former policy colleagues (hello 👋🏻), then here’s three questions for you:
- Do you know what NHS England and CCGs are doing about the poor availability of specialist menopause services as highlighted by NICE’s guidance?
- What are NICE doing about assessing the evidence around CBT for the management of hot flushes and night sweats — treatment recommended in North America, but seemingly not featuring in the UK guidance?
- What can we all do, at a national policy level, around the issue of supporting women (including NHS staff) going through menopause? How is this feeding into thinking around the next national mental health strategy post NHS Long-Term Plan?
As for me, alongside these interviews, I’ve done three things:
- I set up my own company — Lumino. It’s a joy to be building something new and much needed in this space.
- I secured a place on the Oxford Academic Health Science Network’s accelerator programme, run by BioCity, to help me refine my ideas.
- I raised £100k in funding from Innovate UK (thank you to them!) to build our first product.
The next few months are going to be busy building and growing our team — but if you’re someone with an interest in menopause who would value a chat, I’m all ears.
I’m particularly keen to hear from clinicians and women who are interested in campaigning on this topic — there’s so much work to do.
Also, if you’re a woman going through perimenopause right now, I’d love to hear from you if you’d be interested in joining our reference panel.
Don’t underestimate the appetite for change.
Exciting times. I feel a bit of a revolution coming on :)
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