Medical profession cares little for women with early onset menopause

The majority of women experience the menopause during their fifties, and one in every 100 will experience menopause before the age of 40. But who among us would think it could arrive in our thirties. Or our twenties? In truth, as the NHS website explains, “premature or early menopause can occur at any age, and in many cases there’s no clear cause”.

This small, inconspicuous phrase has had astronomical effects on the life of Eleanor Fisher, a programme manager at Staffordshire University. Eleanor is 23 years old and has early onset menopause. After struggling with periods since the age of 18 and several years of visits to doctors and gynaecologists, Eleanor was diagnosed with pregnancy, polycystic ovaries and leukodystrophy – all of which proved false. 

After a third bout of no-show periods and FSH (Follicle-Stimulating Hormone – the hormone that instigates the growth of ovarian follicles before the release of an egg) levels off the scale, Eleanor was finally told that she had the menopause. She’s now two months into Hormone Replacement Therapy (HRT) treatment.

For any young woman this would be stressful. But the anxiety comes not only from the arrival of the menopause when nobody expects it. What makes things much worse, as Eleanor discovered, was the way in which the medical profession behaves towards menopausal women.

“I found [the treatment from medical professionals] quite dismissive,” she explains. “I was kind of told what it was, given HRT and then had deal with it. I’m talking it through with my mum more than with my doctor.”

At university, Eleanor found a network of women who had experienced similar menstrual health problems, who all shared the same view.

“A recurring theme among women is that doctors tend to ignore our problems, especially when it comes to menstrual health and menopause,” she says. “It’s brushed off a lot because we’re considered to be too young. You’re ignored and then left with no answers to all these problems. And if you’ve got a male doctor, you’re more likely to be ignored. That sounds harsh, but it’s just what I’ve found.”

On average, a doctor will have up to just three lectures about the menopause during their time at medical school, despite the fact that half of their patients will experience it in their lifetime.

Another woman whose menopause experience started unexpectedly early was 43-year-old business owner Anna Oldbury. But she is going through the perimenopause, a less well-known precursor to the menopause. In fact, it’s so under-recognised it doesn’t even have a section on the NHS website, just a brief mention under menopause.

It took Anna a visit to a gynaecologist in her native Poland to finally get the diagnosis on her worrying periods, which had stopped for three months without explanation. After visiting her UK GP, who told her it was stress, a doctor in Poland carried out tests and an ultrasound and concluded that it was the perimenopause. Even with this information, her UK GP was still sceptical. She had to do further tests here before she was finally diagnosed and offered HRT.

“I categorically declined,” she explains. “I don’t tolerate hormones well, I never have. I wanted to find a natural way to deal with it that would work for my lifestyle. I was so scared that my stress level was making me ill and it has made me realise that there’s more to life than work.”

Anna has described her experience of the perimenopause as a “wakeup call”. She began taking vitamins like omega 3 and 6 and started to do yoga and meditation daily. She stopped drinking alcohol, eats healthily and claims that these holistic treatments have revived her.

“I used to have stomach issues which have gone away, my sex drive hasn’t depleted, and I have lots of energy,” she explains. “I feel like I’m getting a second lease of life and enjoying things more.”

Choosing to ignore medical advice is not something that comes naturally to people, but holistic methods are proving to be more popular in dealing with the menopause and perimenopause, something to which personal trainer Emily Barclay can testify.

Emily is the founder of the Perimenopause Hub, an online platform which brings together experts from all kinds of fields to help women through their perimenopause symptoms and prepare for the menopause. She was inspired to do this after she began to develop symptoms when she was just 39.

“I suddenly had overwhelming fatigue, weight gain and psycho moments,” she explains. “I had gone from training for long-distance triathlons to not being able to do anything. After about three and a half years of being told lots of ‘helpful’ things by doctors, my current doctor finally took some tests and said that it was hormonal.”

After her diagnosis, Emily began to realise that support for women going through the perimenopause was virtually non-existent, and thus the Perimenopause Hub was born. At first it was a gathering of a few nutritionists and wellness coaches she knew, but now the Facebook group has over 4,100 members and the website gets 1,000 hits per week. It is a place where women go to seek advice not just about their symptoms, but also about what they have been told by their doctors.

“I’ve heard some horrific stories of people who’ve been absolutely dismissed,” Emily says. “When women summon up the courage to talk about the vaginal atrophy aspect of it, I know of some who have been told, ‘Just have a glass of wine and then you’ll be able to have sex with your partner’. It’s terrible.”

According to the British Menopause Society’s (BMS) recent survey, 51 per cent of women say that the menopause has affected their sex lives and, this can have an effect on their relationships. And 38 per cent of partners reportedly said that they felt helpless when it comes to supporting their partner through the menopause.

But it is very easy for these statistics to be interpreted in a damaging light. “Millions of men could be suffering from their partner’s menopause because of mood swings, a poll suggests,” was a Daily Mail  headline at the end of May this year, in which the reporter used accounts from a survey by FutureYou Cambridge, highlighting the various symptoms of the menopause that every woman has to endure, but from the perspective of their partners.

Not only did this article diminish the sufferings of these women by comparing it to that which is “endured” by their partners, it also failed to acknowledge that this survey was carried out by a drugs company keen to make some sales on its new “menopause range”.  

Rather than claiming that these partners are the ones which “suffer”, as the Daily Mail suggests, Emily argues that it is education which will lead to a better menopause experience for everyone involved. 

“There needs to be more education for men on how they can support their partner or mum or sister,” she says. “It affects everybody. It’s primarily women in their forties and fifties living through the physical side of it, but it affects their relationships and their families too.”

The menopause’s effect on family life is something Eleanor Fisher has been forced to face prematurely.

After her diagnosis and conversations with her mum, Eleanor asked her doctor about fertility clinics and freezing her eggs for when she decides to have children, only to be told that she probably didn’t have any eggs left to freeze. Eleanor took to literature to try to help her through this difficult and unprecedented time and learn more about her condition, but found that there was little out there to support her.

“There’s a lot of things out there for older women who are going through it at a “normal” time but there is nothing out there for women going through it early and having to overcome things like not being able to have children,” she explains. “Obviously, women aren’t baby-making machines but it’s something a lot of us factor into our lives and then it’s just taken away from you.”

When Eleanor tells me this, I can’t help but marvel at how open and positive she seems to be in the face of such tragic news. “Don’t get me wrong, there has been a lot of tears,” she says. “Talking about kids really gets to me a lot of the time and sometimes I find myself thinking about my child in the future and then I remember if I do have a child it won’t have my genes. But because I’m so young it doesn’t seem real yet.”

Becoming infertile is often a welcome symptom for women going through the menopause at a “normal" time, as they don’t have to worry about getting pregnant. However, this and other symptoms like hot flushes are something Eleanor didn’t think she would have to worry about for a very long time. For now, her HRT has eased these, but before that, she used to make light of them.

“Me and mum used to laugh them off because we thought they were stress-related,” she says. “We’ve all learned as women to laugh off these things. It’s not fair because this is something that people need to talk about openly so that other people can learn. They’re natural things.”

Laughing off a hot flush is something self-employed bookkeeper Sara Eaton relies upon to ease the embarrassment of having one in front of a client.

“It’s the only way to deal with it,” she explains. “I go bright red and sweat and they just look at you like there’s something wrong with you.”

Sara is 59 and has been enduring hot flushes for 15 years. In its worst phase, she was experiencing hot flushes every 45 minutes. Her weight gain has brought her self-esteem to an all time low.

“To look at my body – I hate it,” she says. “It’s just not what I want to see. The weight gain and not being able to get rid of it is horrible. It’s made me feel very unfeminine. I feel like there isn’t much of ‘me’ left.”

But these symptoms don’t just affect women while they are going through the menopause. Recent research from the University of Queensland found that women who experienced hot flushes and night sweats after menopause are 70 per cent more likely to have heart attacks, angina and strokes.

As well as hot flushes and weight gain, some of the most common symptoms of the menopause are a dip in libido and mood swings. According to a recent survey by the BMS, 42 per cent of menopausal women said that they don’t feel sexy anymore, and 45 per cent of women say that their menopause symptoms have had a negative impact on their work.

But perhaps the more alarming statistic is that 47 per cent of women said that they’d had to take a day off work as a result of their symptoms but did not tell their employer the real reason.

“There was no give and take, and no support,” says Clarissa Kristjansson, a post-menopausal woman who left her corporate job as a result of its lack of support through her menopause. “I suffered from extreme anxiety, I had brain fog and I wasn’t sleeping. My health was very poor, and I had lost my passion for living. I would sit at my desk, do what was necessary but my heart wasn’t in it. I had no one to talk to. Had they been more accommodating and more human, I might not have left.”

Despite Clarissa’s negative experiences towards the end of her corporate career, she has used this change in her body to make a change in her lifestyle. After quitting her high-flying corporate job in Sydney, she trained in mindfulness and third-age women’s health and is now a qualified menopause transition specialist, working to help women manage their menopause better.

“I lived in Sydney, I had a lovely property and good money, but I thought, what’s the point in having all this if you’re miserable? I’m here on the other side and I don’t regret it one bit.”

Similarly, Anna Oldbury argues that a society-wide re-understanding of the menopause is necessary, highlighting that in Asian cultures, older women are revered and respected for their wisdom and experience.

“Men should be more educated,” she explains. “They should be more understanding of the hormonal cycle, it’s not an illness but can make you feel really rough, so they should be aware of it. There needs to be investment into the education of society, not just of women.”

For Clarissa, whose most negative experience of the menopause came from her corporate environment, education in the workplace is the best way to ensure that menopausal women still feel valued and respected.

“We’re not asking men to be knowledgeable in the depths of the physiology of it, but there are certain symptoms which managers and leaders should be able to recognise,” she argues. “If a woman who has previously been brilliant at her job suddenly goes off the boil at a certain age, that could be one of the reasons.”

“The worst thing to do is force people to sit in a room and be told about it or make it voluntary because then only women will turn up. And what we don’t want is for people to just stick a fan on someone’s desk – you might as well put a sticker on her head saying, ‘I’m going through the menopause’. We just want understanding, to be valued and treated with respect. It should be disciplinary if people make mocking comments about it.”

Recent advancements in in eLearning have created CPD Certified online menopause training courses for employers to take part in now.

It is education such as this which BMS council member, Paula Briggs, believes to be the strongest solution to dealing with societal misunderstanding of menopause. She believes studies and research into menopause health that are going ahead need to be more visible. After working as a GP for 20 years, Paula became a consultant in sexual and reproductive health. She argues that although menopause-based policies are put in place in workplaces, they need to be acted on with the support of education.

“Big organisations like the tax office, police, fire brigade, NHS have policies about education,” she says. “Policies are fine but they don’t actually make people better. The BMS has developed a new electronic education system, but that will attract the GPs who are interested and they’re not the problem. The problem is the people who are still clinging on to what they read in the tabloids in 2002.”

This refers to research by the Women’s Health Initiative into HRT and its effect on women’s health in 2002 – something which Paula argues was sensationalised by the media, convincing women and GPs alike that HRT is bad for women’s health.

“It’s really important that women are  given all the information about all the treatments available,” Paula explains. “If they don’t want to take HRT, and they’re given the correct information on which to base that decision, it’s their decision.”

Paula has been working on a digital, all-you-can-know leaflet about the menopause, the symptoms, how to manage them and the risks with various treatments. No woman is the same and will have to be treated in various different ways. But information like this is exactly what many experts argue is needed for, not just women, but for society as a whole to fully understand the menopause and how to cope with it.

One of Sara’s coping mechanisms was to have a boudoir photoshoot, which she won in a Facebook competition.

“The photoshoot was brilliant,” she explains. “They make you feel amazing and obviously the photos come out and they give you a totally different perspective of what someone else would see, and that’s fantastic.”

But this has not been the answer to Sara’s problems.

“You’re made up, there’s special lighting. So, what you see is not real.”

Other treatments include diet changes, exercise regimes, yoga and holistic remedies, all of which women such as Anna and Emily encourage. When I asked Clarissa how she would advise someone like Sara, who is struggling through the menopause, she explained that the main thing to overcome is acceptance.

“A lot of what we have to do is accept that we’re on this journey and that it isn’t going to last forever,” she explains. “It’s to do with mindset. The media doesn’t help because it continues to perpetuate very negative images of what women are like.”

However, she and Anna both argue that a widespread, nationwide boost in information about nutritious diets and basic foundational health will help menopausal women too. For example, in Japan, where their diet is very fish and soy-heavy, just 7 per cent of menopausal women experience hot flushes, as opposed to 46 per cent in the UK.

All of these issues stem from the wide variety of symptoms and treatments of menopause. This is further complicated by the variety of responses women can have. But this lack of understanding should come as no surprise when, according to the UK Clinical Research Collaboration’s report in 2014, less than 2.5 per cent of medical research funding is dedicated to reproductive health. 

Some research is happening. Paula’s work could make a huge difference and there is a huge NIHR grant funded project called Poise in which many menopause specialists are taking part. A recent study in the Endocrine Society's Journal of Clinical Endocrinology & Metabolism revealed that early menopause could be linked to per- and polyfluoroalkyl substance exposure: human-made chemicals used in non-stick and waterproof products that contaminate water. But women are often excluded from clinical trials because testers are afraid their hormones will affect the results. Thus, not only are treatments for diseases which affect both men and women biased towards men, but also conditions which affect women only are often overlooked.

For Eleanor, this is something that has become all too familiar to her, after years of visiting various doctors and gynaecologists, before finally being told the shocking truth about her condition. If she had known more about the various complications that can affect women even as young as her, she might have been more aware of what her symptoms could have been when they began five years ago.

“There needs to be so much more education about women’s health,” she urges. “You don’t get taught about all the problems you’re going to come across, like polycystic ovaries or endometriosis. You only hear about these things if you know someone who’s got it.”

It is fortunate that women such as Anna, Emily, Clarissa, Sara and Eleanor are willing to tell their stories and share how they have coped with their menopause experience. There needs to be more support of research into women’s health conditions such as the menopause and perimenopause and efforts to make that research becomes more visible. Until then, women will continue to be mistreated at work, ignored by medical staff and confused about what is happening to their bodies and how to treat it.