AS women, we are accustomed to pain – during periods, in the middle of our cycle and in pregnancy or childbirth.
But what about the unexplained pain? Whether it is in the lower back or joints, in the pelvis or abdomen, headaches, or even heart pain, many predominantly female symptoms are blamed on stress or hormones.
In March a study of seven million patients over 21 years found that women are diagnosed later than men across 700 diseases, and another survey this year found that 476,000 British women have had to visit their GP 11 times for a positive diagnosis.
In a new book, Pain And Prejudice: A Call To Arms For Women And Their Bodies, Australian journalist Gabrielle Jackson explores the gender health gap.
Writing the book after her own struggle with endometriosis — a condition of the uterus causing pain and bleeding — she found that women lack education about their own bodies and are under-served both in medical research and the treatment they receive.
She says: “The major thing that shocked me was that medical science had never really studied endometriosis.
“Even though it had been written about in text books and had been identified for well over a century, no one had actually bothered to put any money or effort into finding out what causes it or even how it works.
“That led me to discover how little we know about female biology in general and how women weren’t included in clinical trials really until the Nineties.”
Gabrielle points to research by British gynaecological cancer charity The Eve Appeal, which found that 44 per cent of women could not correctly identify a vagina in a diagram.
She says: “I realised it wasn’t an accident we know so little — this was by design. We’re not educated about our bodies and we’re told it’s shameful to talk about them, and that has been a major problem in women getting the healthcare they need.”
Gabrielle was diagnosed with endometriosis in 2001 when she was 23. Before that, she had been wrongly diagnosed with chronic fatigue syndrome — a misdiagnosis which she later discovered happens to women with endometriosis 180 times more often than to women with other illnesses.
Despite initial relief at getting a correct diagnosis and treatment, Gabrielle continued to get unexplained pain in her back and hip, bowel problems, dizziness and nausea.
She says: “It wasn’t until an endometriosis conference in 2015 that I realised my symptoms were all very common symptoms of endometriosis. I cried all the way home. I rang my mum and I remember saying, ‘Mum, I’m not a hypochondriac.’ I was 38 and spent my whole adult life thinking I was somehow weak and a bit second-rate because I would get sick and would be in pain a lot and I would get so tired. That conference changed everything for me. I thought, ‘If I know so little about this, there must be lots of other women who know little too.’”
Gabrielle decided to write the book to help other women like her. She says: “Once I understood my disease and found a doctor who understood it, my quality of life improved so much. I wanted to give people hope because so many feel hopeless.”
She continues: “Seventy per cent of people with chronic pain are women or people with female sex organs but 80 per cent of the research has been done with men or male rodents. That is shocking. We know pain is perceived differently in male and female brains so that research is basically useless for the vast majority of people with chronic pain.”
She discovered that, while chronic pain affects the same number of people as cancer, heart disease and diabetes combined in the US, it receives 95 per cent less research funding.
Auto-immune conditions affect five to ten per cent of the population, but due to the different immune responses in men and women, three quarters of sufferers are women.
Gabrielle found that despite such conditions costing society up to $100billion (£78billion) annually, their causes are virtually unknown and there are no cures. And of those women who receive a diagnosis, almost half will have been told they are hypochondriacs or “too concerned with their health” and many have been diagnosed with mental illness.
- 476,000 women in the UK have had to visit their GP 11 times for a positive diagnosis, reveals a 2019 survey
- Women are diagnosed later than men across 700 diseases, according to a study of seven million patients over 21 years
- With identical symptoms being input, virtual GP app Babylon still more likely to diagnose a heart attack in males and panic attack
- Women with endometriosis are 180 times more likely than non-sufferers to be wrongly diagnosed with chronic fatigue syndrome
As well as a lack of education and research around women’s health, women also experience delays in diagnosis and treatment.
Recent British Heart Foundation-funded research found that women who went to A&E experiencing chest pain, and were later found to be suffering a heart attack, were half as likely as men to receive the recommended treatment.
Professor Jeremy Pearson, Associate Director at the British Heart Foundation, said: “The misconception that heart attacks are just a male issue means women receive less care than men at almost every stage, from the moment they report symptoms through to aftercare.
“But more women die from coronary heart disease than breast cancer in the UK.” In fact, twice as many women die in the 30 days after a heart attack than men.
Another study found that virtual GP app Babylon was more likely to diagnose a heart attack in males but more likely to diagnose a panic attack in females, despite identical symptoms being inputted.
Gabrielle says: “It’s quite established in scientific literature that women and men have different kinds of heart attacks but it hasn’t seemed to change treatment as quickly as it should. Even though doctors talk about the studies around heart attacks, they still can’t get past that prejudice when they see an outpatient, and they think she’s just a bit anxious or she’s very uptight or worried about her health, and they send her home with anxiety.”
She continues: “My partner is a doctor and he’s certainly no sexist pig, so I wanted to understand why so many doctors — even nice ones who care about their patients — have these attitudes towards women. It is basically rooted in medical science. Women are inferior versions of men and the things that make them different make them somehow deficient, and because scientists thought they were less interesting, no one bothered to study them.”
Instead, many women’s health complaints have historically been explained as hysteria, which was widely recognised as a disease by Western doctors from the 17th to the 20th century.
Gabrielle says: “I was shocked by the history of hysteria and how medicine has always found a way to police difficult women.
“The condition was originally thought to be a physical disease caused by the womb, and brutal surgeries were performed to try to cure it. Later, Freud and others helped to popularise the notion that hysteria was all in the mind.
“While the word ‘hysteria’ eventually vanished from medical textbooks, its legend lives on in how doctors respond to women with complex problems that they don’t have answers for.”
But Gabrielle hopes attitudes are starting to change. She says: “There is still a long way to go before men and women are treated equally in medicine.
“But medicine is capable of great and quick change, as we saw with breast cancer.
“Fifty years ago, women with breast cancer were told the same things that women with endometriosis are told — that it’s a career woman’s disease or it’s because they delayed childbirth.
“It was only because women got together and lobbied for money and research that things changed.”
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