Lauren Gallagher was diagnosed with Endometriosis in August 2017. Her current gynaecologist and bowel surgeon, each with over 20 years of experience, said it was the worst case they had ever seen, describing her insides as “unrecognisable.” This was after a battle with her doctors to convince them that the excruciating pain she was experiencing was even real.
“I was diagnosed after seeing 5 different Drs. Each telling me to just try a pill or take ibuprofen. One even tried to class me as clinically depressed because I said I “couldn’t handle the pain anymore,” Lauren explained to Syrona Health.
I know that I’m lucky I only had to see four other Drs before I found the one who knew what was going on. However, that’s still too many. And even when I was diagnosed, my old gynae insinuated that the amount of pain I was in was exaggerated.” Lauren’s struggle is by no means a unique one, a 2019 study published to the National Library of Medicine Journal, found that in the UK there is an average delay of eight years from first symptom onset to endo diagnosis.
It is hard not to question, would it be different if men had to go through the same physical and emotional suffering? Why is it that conditions affecting anyone with a female reproductive system, such as endometriosis, PCOS, and vaginismus, are so misunderstood and poorly treated? Since the Me-Too movement, many of us have been more aware than ever of the ways that inequality permeates our life, but one area that is often overlooked is perhaps the most essential, our healthcare.
Known as the gender health gap, the inequality we face spans across the entire healthcare system; from lack of research into our health conditions to harmful stereotypes. This approach is so ingrained into healthcare that we probably don’t even realise it’s affecting us. But it is affecting us and badly, women are often misdiagnosed because our symptoms are not the same as men’s. Women are 50% more likely to receive an initial misdiagnosis when they are having a heart attack than men and twice as likely than men to suffer delays in brain tumour diagnosis.
Not to mention when we break down this inequality even further to minority groups. In the UK black women are five times more likely to die during pregnancy than white women and in a UK government survey, 38% of trans people reported having a negative experience due to their gender identity when accessing general healthcare.
This issue is not just a UK one, health inequality is present the world over. We can’t afford for a globe full of women to be kept in the dark about their health, treated like a great mystery to rival the Bermuda triangle. So, let’s shed some light on the gender health gap.
The female body is simultaneously revered and taboo. Take the censorship of nipples on Instagram as an example, when a woman chooses to post a picture of her breastfeeding her child it is considered too revealing, but scrolling past a classic painting of a female nude, by some male Renaissance artist, wouldn’t raise an eyebrow. The female body is a spectacle, to be admired when men state it’s okay to do so, and without the need of being properly understood.
Medical comprehension of the female body has been s-l-o-w to catch up anywhere near that of men. Despite the fact we have been menstruating since before we were even fully evolved homo sapiens, it took until the 19th century for doctors to join the dots between periods and ovulation. Let’s also not forget that many ancient civilisations were quick to brand women as witches. According to Roman philosopher, Pliny the Elder, when menstruating, women could stop hailstorms and lightening, as well as kill crops.
Going back to the 15th and 16th centuries, criminals (usually men) were hung at the gallows for their crimes and graverobbers were hired to steal their bodies in the name of medicine. The bar for the earliest understandings of human anatomy was set here and modern medicine as we know it began to take shape. But this excluded women from the start, who were discounted from this new biological enlightenment as their bodies were considered too complicated and hormonal to form a basis for dependable research.
It’s All in Your Head A seminal 2001 study, aptly titled, “The Girl Who Cried Pain”, confirmed the frustrations that many of us have had when leaving the doctor’s office. Women are more likely to have their pain reported by doctors as “emotional”, “psychogenic,” and “not real.” This stems from two dangerous stereotypes, the first is one that has existed for centuries; that women are overly sensitive creatures, experiencing the world exclusively through our emotions.
Jump to the 18th century and we find that, during a time when women were still not allowed to be doctors, hysteria was the most common diagnosis for women. No matter what the ailment, from fainting to fluid retention, the cause had to be a psychological one.
The second toxic assumption is that we have a higher pain threshold. This stereotype may stem from the idea that through menstruation and child birth, we are born to have, and therefore better tolerate, more pain than men. While it’s true men and women do tend to experience pain differently, that doesn’t mean we feel it less. In fact, approximately 70% of people suffering from chronic pain conditions are women, yet 80% of pain studies are conducted using male mice or human men.
The Data Gap
Yep, that’s right, there’s another equality gap and this time it’s about a serious lack of data and research on the female body. It is industry standard for the male body to be the default in clinical trials, right down to animals and cells, with even the standard laboratory mouse being male. This means that while we have a pretty top notch understanding of how the male body reacts to medical treatments, the female body remains the mysterious medical ‘other’.
According to Public Health England, one third of women will experience severe reproductive health issues in their lifetime, yet less than 2.5% of publicly funded research is exclusively dedicated to female reproductive health. The Medical Research Council, the authority in co-ordinating medical research in the UK, is also yet to produce guidelines which relate to the sex of participants. Meaning that there is still nothing to enforce the use of female participants in medical research.
Given the biased nature of the healthcare system, from male-focused studies to stereotypes, it’s unsurprising that this may tinge even the most well-meaning medical student with prejudices, regardless of their gender.
Dr Natalie Ashburner, a psychiatry registrar for the NHS and member of the Doctors Association UK, told Cosmopolitan, “Obviously, there’s a lot to learn in medical school, so often we’re taught to recognise patterns; things that are common. I think this can lead to certain groups not being recognised when we’re looking at how to treat them.”
Thanks to the gender data gap, it is safe to say that our symptoms often fall out with these recognisable patterns. This, along with an over extended health service and gender bias, can easily cause doctors to miss the mark when diagnosing our health conditions.
“The only way we’re ever going to recognise biases is if we pull ourselves up on them,” Dr Sarah Hillman, a GP and clinical lecturer, warned Cosmopolitan. “For many years I was blindly practising, unaware of my own biases. It’s only when I started to call myself out on them that my awareness grew: ‘Why have I had that feeling about somebody?’ Unless we all start doing it, we’re at risk of practising the same medicine forever.”
A growing technological sector, known as femtech, is contributing to bringing our healthcare up to the speed of the 21st century. This includes health tracking apps, just like us at Syrona Health, which are helping to collect female data and close that gender data gap. Health technology that centres a non-male experience gives us the chance to learn about and trust in our bodies, so we won’t fear being labelled a hypochondriac when we know something is wrong.
Arming ourselves with information is key when struggling against health inequality – it’s the reason we create our Femsights blogs. There are many areas that need dramatic improvement; policy should be implemented to ensure sex is accounted for in research and education needs to account for unconscious bias against women. These changes can – and probably will – take time but the more awareness is spread about the gender health gap, the more all areas of the healthcare system will have to sit up and take notice. At Syrona we are committed to increasing industry wide understanding of the health of women, trans and non-binary folks, ensuring everyone feels listened to and taken seriously. We must support each other, especially underrepresented groups, such as black women and those with a minority gender identity, and share what we learn so we feel ready to back ourselves when we walk into that GP’s office.