Uncharted Bodies: Why We’re Exploring The Gender Health Gap

It was a damp but tepid morning in early March as winter gave way to spring. Coronavirus dominated the headlines and news broadcasts but the overriding message was that we, in Britain, had nothing to worry about. Unaware of the chaos that the encroaching global pandemic was about to cause, I sat with a group of journalists and medical experts under bright strip lights in a glass-walled conference room at the Department of Health in Westminster to discuss a different endemic health issue: chronic medical failings in the vastly complex world of women’s health. 

"Why is there a lack of research into women’s health?" medical professionals asked again and again. "Endometriosis might not actually be one disease, it might be two," added Emma Cox, the CEO of Endometriosis UK. "Care isn’t joined up," doctors kept saying about issues like sexual health and contraception and conditions such as polycystic ovary syndrome. "GP appointments are too short to diagnose and treat women with conditions like endometriosis," another voice piped up. "Why don’t we just have special appointments for women?"

"GPs should learn more about women’s health but they have so much to learn," responded Anne Connolly, the clinical lead at the Royal College of Obstetricians and Gynaecologists, before asking what feels like an eternal question in this field: "How do we get over the basics?" 

The COVID-19 chaos may have pressed pause on the government’s plans to follow up on that breakfast meeting and deal with the gender health gap but this problem deserves our attention as much as it ever did. At Refinery29 we’ve recently heard from the journalist Catherine Renton who had her endometriosis surgery cancelled because of the pandemic and now, instead of a laparoscopy, faces a hysterectomy. We also know that lockdown made it difficult for women and girls to access contraception. 

Access to treatment and proper training for general practitioners in complex conditions are just two aspects of the gender health gap. Sexist bias in medical research is another. The frustrating truth is there is still a lot we don’t know about women’s health. This is because women were historically excluded from clinical trials due to our hormonal fluctuations and because data from research often wasn’t analysed on the basis of gender. This research gap is being acknowledged more and more, perhaps best by Professor Carolyn Mazure at Yale, Angela Saini in her book Inferior: How Science Got Women Wrong and, more recently, Caroline Criado-Perez in Invisible Women: Exposing Data Bias In A World Designed For Men.

This is at once a problem which is particular to Britain and global in its significance because research is conducted internationally while healthcare is administered locally. And where the former is lacking, the latter cannot and does not work for women. 

We still don’t know what causes endometriosis, for instance, and according to research database PubMed, while there have been 1,954 clinical trials studying erectile dysfunction, there have been just 393 looking into female sexual pain. Similarly, there has been five times the amount of research into erectile dysfunction, which affects around 19% of men, than there has been into premenstrual syndrome, which affects 90% of women. So much so that we still don’t know what causes PMS. 

Across the board, less than 2.5% of publicly funded research has been dedicated exclusively to reproductive health. This statistic exists despite the fact that one in three – yes, one in three – women will experience severe reproductive health issues in their lifetime, according to Public Health England. 

All of this matters. Doctors can’t help properly if they don’t have enough information and, without information, women cannot make informed choices about their health. How gender bias in medicine and a lack of research in women’s health fuels a dearth of knowledge on the part of general practitioners which, in turn, affects the treatment that women and people with wombs receive at the point of delivery was the subject of the first ever report released by the All-Party Parliamentary Group on Women’s Health (Women's Health APPG).

In a survey of over 2,600 women with endometriosis and fibroids, they found that women are not treated with dignity, are not provided with sufficient information about their treatment options and are not told appropriately about treatment side effects when counselled about their gynaecological health. Responding to the survey, 42% of women said that they were not treated with dignity and respect, 62% of women were not satisfied with the information that they received about treatment options for endometriosis and fibroids, and nearly 50% of women were not told about the short-term or long-term complications from the treatment options provided to them.

We also know that problems surrounding access to healthcare and treatment for women and people with wombs are compounded by both race and class. Black women in the UK are half as likely to be diagnosed with endometriosis as white women and the British Medical Association has found what it calls "stark healthcare inequalities" based on income and ethnicity.

There is a gender health gap and it’s impacting the wellbeing of women and people with wombs day in, day out. That’s why a meeting to discuss it was held by the government before the COVID-19 pandemic took hold and that’s why we’re running this weeklong series here at Refinery29 UK: Uncharted Bodies: Exploring The Gender Health Gap. We’ll be looking at five distinct areas in reproductive and gynaecological health where a lack of research and therefore data is directly affecting women’s health: endometriosis, hormonal contraception and how it affects women’s brains, polycystic ovary syndrome (PCOS), premenstrual dysphoric disorder (PMDD) and vaginismus. 

It doesn’t have to be like this. Over the last seven years of reporting on women’s health, I’ve been fortunate enough to visit Denmark where they have a huge prescription database going back to 1995 and a national health registry which means they can conduct data-led studies such as the one which linked exposure to hormonal contraception with mental health problems. As Professor Øjvind Lidegaard who led that study told me when we met, we need independent data and research which is not funded by drug companies themselves. "Many more studies have been conducted to prove that [the pill] protects against ovarian cancer than that it can increase the risk of depression," he explained. "It is much more difficult to get support to study the negative reactions and demonstrate the adverse effects."

Data matters, whether it’s from a clinical study or statistics on waiting times, what medication women are being prescribed or how many appointments they go through before a specialist referral. These issues are all interlinked. In this series we hear from the journalist Kate Lloyd, who was passed from doctor to doctor before finally receiving a vaginismus diagnosis. And according to Endometriosis UK, there is now an average of seven and a half years between women first seeing a doctor about their symptoms and receiving a firm endometriosis diagnosis.

As part of our Uncharted Bodies investigation, Refinery29 UK submitted freedom of information (FoI) requests to the NHS to find out what (if any) data they are currently collecting about the conditions we have decided to zoom in on. The resounding answer to our questions was that the NHS is not collecting the data needed to answer them. 

We asked the NHS how long women suffering from endometriosis, premenstrual dysphoric disorder (PMDD) and vaginismus were having to wait for specialist referrals. NHS England said that they "do not hold this information" while, at a local level, several NHS trusts said that they do not collect information "at a condition level". This means that while they collect data on 'gynaecology' broadly, they do not specifically record it "at a condition level" – i.e. whether the patient had endometriosis, PMDD or vaginismus. This is despite the fact that these are different conditions, requiring different treatments and specialisms. 

These FoI requests which asked about waiting times were submitted to NHS trusts and clinical commissioning groups (CCGs) across England. We found that only a very small number collect any data at all on waiting times. If there is no universal requirement for the different parts of the NHS – GP surgeries, trusts and CCGs – to collect data in the same way, then it is impossible to get a clear picture of what is going on.

Part of the problem is that unlike in Denmark, data is not held centrally in the NHS. Local NHS trusts referred us to GP surgeries who, in turn, referred us back to NHS England who referred us, once again, back to a local level.

Given that the Women's Health APPG found that women were not satisfied with the treatment they received, we also asked the NHS how many times in the last 10 years a complaint has been submitted from a patient who wishes to raise concern about how they were treated by a doctor for endometriosis, polycystic ovaries, concerns pertaining to hormonal contraception and mental health, PMDD and vaginismus. NHS England told us that this information is not held.

Knowledge is power but neither women nor their doctors can make informed decisions without well-researched information. To address this, at the end of last year the Royal College of Obstetricians and Gynaecologists called for better, more joined up women's health services in its "Better for Women" report. In it, they emphasised the need for national strategies to meet the needs of girls and women throughout their life course – from adolescence to the middle years and later life. They also stressed the need for a move away from "providing a disease intervention service towards a preventative health service".

In order to achieve this, they recommended the creation of "one-stop women's health clinics" where women and people with wombs could access specialist reproductive and sexual healthcare services in one place in order to improve treatment as well as accessibility and, ultimately, address the social and economic inequalities women also face in access to healthcare.

When you put it like that, it sounds so simple, doesn't it? As we continue to come to terms with new realities and thinking about how we, as a society, can do things better in the wake of COVID-19, there's never been a better time to look at how we close the gender health gap once and for all. The NHS is brilliant and its core value of providing free healthcare at the point of delivery is something that everyone in the UK should be proud of – but that doesn't mean we can't ask for it to be better.

"From the moment I took on this role I have been determined to improve the experience of women across the health system. To do that we must shine a light on the issues and not be afraid of what we find.

"Women make up over half of the UK population and yet we are hugely underrepresented when it comes to the collection of health data.

"We know women are less likely to participate in clinical trials. If we want to design a healthcare system that works for all women, and give all women the healthcare they deserve, we need to fill in the data gap.

"By doing this, together we can help challenge the collective unconscious bias and fight to give every woman a voice when it comes to their care."

"Many girls and women are suffering unnecessarily from potentially manageable or treatable conditions because of silence, stigma and shame, and due to the fact that there is a significant data gap in medical research focused on women’s health – less than 3% of overall medical research funding is focused on women’s specific diseases.

"Not only does this lack of information contribute to taboos, but also leads to health disparities – something which our Race Equalities Taskforce would like to tackle. We know that women are less likely to be invited to, or participate in, medical trials and research – despite women comprising 51% of the population. Many landmark trials over the decades have used men as the ‘typical patient’ which we do not feel can be extrapolated to the whole patient population. Black, Asian and ethnic minority women are even less likely to be included in medical research compared to white women. Furthermore, there is a lack of research involving the LGBTQ+ community which also amplifies health inequalities.

"A lack of understanding about common conditions – including PMDD, endometriosis and vaginismus – among healthcare professionals leads to delays in diagnosis, resulting in a higher risk of harm.

"The RCOG, in its 'Better for Women' report, has called for an end to the data gender gap and for medical research to become more inclusive to ensure that all girls and women get the advice and treatment that is right for them. This will improve diagnostic rates, patient experience and improve morbidity and mortality rates for all women."

"For too long, endometriosis has been brushed under the carpet and not given the attention it deserves. Society, and the NHS, need to wake up and recognise the scale of endometriosis and commit the resources, data and research needed to diagnose, treat and manage the disease. Without investment in research, a reduction in diagnosis time and better access to pain management, those with endometriosis will continue to face huge barriers in accessing the right treatment at the right time.

"The impact the condition can have on all aspects of a person’s life cannot be overstated and must be recognised. They may miss out on work, education, and relationships and mental health can suffer. Before a diagnosis, women may be told their symptoms are 'normal' or even 'in their head', waiting on average seven and a half years to be diagnosed. This is no way for people with endometriosis to be treated in the 21st century.

"Despite affecting 1.5 million women and those assigned female at birth in the UK, and 176 million worldwide, there is no cure, we do not know what causes the disease, and treatments are not always helpful and can come with risks or side effects.

"It is absolutely vital that research is commissioned to discover the cause of endometriosis, better treatment and management options, and one day a cure. Without investment in research, this condition will rob the next generation of women of the education, care and support they need."

“The commissioning of NHS services for women is decided by clinicians on the ground, who know their patients best and who can use locally collected data to design care – in line with national guidance - which best meets the needs of women in their communities."

“Endometriosis can be difficult to diagnose and anyone who experiences symptoms - such as severe period pain, difficulty getting pregnant and pain during or after sex – should seek support from their GP, who can make a referral to a specially trained gynaecologist so they can get the care they need.”