For 25 years, Leah Myers felt like she was in labour every time she had her period. The intense cramps would start on the first day and last for four days, crippling her for hours.
From the age of 15, Ms Myers, now 40, was put on contraceptive pill after contraceptive pill in order to rid her of what the doctors deemed the cause of her problem: "too much testosterone". Sometimes, the pain eased; other times, it didn’t.
Leah Myers had her pain misdiagnosed for 25 years.Credit:Paul Harris
What remained constant was the piercing pain in her stomach, which no doctor could fix.
“I was beginning to believe it was all in my head, and my doctors had gone as far as referring me to psychologists before my diagnosis,” Ms Myers said.
“It wasn’t until a friend recommended I try her GP who finally referred me to a specialist who, after doing tests, put his hand on my shoulder gently and said, 'I believe you. I know what you’ve been through and I’m here to help'.”
The diagnosis? Endometriosis.
“It was a massive relief just to hear those words. I was so sick of having to try and convince doctors that I was in so much pain,” Ms Myers recalls.
Paula Conlan was a fit 44-year-old who liked to run 10 kilometres four times a week. She is diminutive, health-conscious, has low cholesterol and would never have guessed her undoing would be a heart attack.
“Three years ago I was six kilometres into a run when I felt a bit faint … and then nothing. I have no memory of what happened after that for some time,” she says.
I still can’t believe this happened to me. I didn’t have any of the symptoms – no pain in the chest, I wasn’t overweight or unhealthy.
She wasn't left guessing for long: the 47-year-old was later told she was lucky to have been found, collapsed in the gutter, by a couple of off-duty police officers who saved her life following a massive heart attack.
“I still can’t believe this happened to me,” Ms Conlan says. “I didn’t have any of the symptoms – no pain in the chest, I wasn’t overweight or unhealthy.
“It’s madness, really. The perception of who has a heart attack, and what the symptoms are like is so different from what I knew, and what happened to me”.
These cases share one crucial thing: women’s struggle to have their health issues recognised as legitimate and how our standard understanding of pain and symptoms is overwhelmingly based on the male experience.
Despite the scientific progress of the last century, health experts say women continue to be discriminated against, whether consciously or unconsciously, in almost every part of the medical system, from clinical trial participation all the way to care management and pain alleviation.
Women and pain
There is ample evidence that shows women are less likely to have their pain treated, their symptoms taken seriously or to be given a diagnosis than men.
When women report pain, they’re far more likely to be prescribed sedatives than men, and are far less likely to receive opioid painkillers when they present in emergency departments.
The same level of care for both genders is not even guaranteed after major surgery: one study found that women who received coronary bypass surgery were only half as likely to be prescribed painkillers compared to men who had undergone the same operation.
Even after they are prescribed pain medication, women will wait longer to receive it. So what’s going on?
Why the biggest killer of Australian women is still a surprise
Despite being the leading cause of death among women in Australia (more than 2500 women have already died from heart disease this year alone), most people are unaware that more than a third of women have at least three risk factors, and that nearly 100,000 Australian women aged 18 to 44 have five or more risk factors.
Generally we are taught that the classic heart attack symptoms are chest pain. For a significant number of women they are different.
“Most women don't understand a heart attack is more likely to cause them problems than breast cancer,” says NSW Liverpool Hospital’s Dr Christian Mussap, a cardiologist who has worked in the field for more than two decades.
“In fact, heart disease accounts for three time more deaths in women than breast cancer,” he says.
Generally, we are taught that classic heart attack symptoms include chest pain – “the elephant on the chest” – a painful left arm or pain in the jaw and neck.
“For a significant number of women, the symptoms are different,” Dr Mussap says.
“Rather than chest pain, women tend to have fatigue, shortness of breath, light-headedness, sweating and some vague chest discomfort. These are all vague symptoms that can relate to a lot of different health conditions.”
So why is it that we are taught to recognise heart attack symptoms which primarily present in men?
It turns out that most early research into cardiovascular disease was conducted on men, with women making up only 25 per cent of participants across 31 landmark trials for congestive heart failure between 1987 and 2012.
Only last year, a study using data from 41 hospitals around the country found that women who suffer a serious heart attack are half as likely to receive proper treatment in an Australian hospital than men, and are twice as likely to die six months are they’re discharged.
Clinical trials: why researchers prefer men
A big problem with our medical system is that drugs for most conditions have been tested on men.
Whether it’s testing the effects of obesity on breast and uterine cancer using only male studies (as New York City’s Rockefeller University did in 1986); or testing the safety of female Viagra when taken with alcohol on 23 men and only two women, the medical industry is full of examples where drugs widely prescribed to both sexes are tested primarily on men.
Considering that clinical trials are the bedrock of medical research and evidence building, this means that 50 per cent of the population is prescribed drugs that may not work – or even make things worse.
“It is absolutely vital that we test on both sexes,” says Dr Zoe Wainer, head of public health and medical director at Bupa.
“This is not just a women’s health issue: it’s actually about both men and women. Men tend to have worse health outcomes, so it would stand to benefit men if we actually worked out how women fight conditions.”
Reasons cited by researchers for not including women (this also include female animals) include women's (un)availability to participate in trials; concerns about the impact on women’s reproductive health; or the impact of female hormones and menstrual cycle on the trials.
“There also exists an incorrect assumption that we know when sex matters, so there’s no point in testing on both sexes,” Dr Wainer says.
As a result, “there just isn’t targeted biological research to understand the difference between sexes in Australia”.
Dr Mussap agrees: “It’s research that underpins our understanding of how to treat these conditions, and research is based on clinical trials,” he says.
“Traditionally, clinical trials have recruited predominantly male patients, which means that the data that supports out treatment strategies are derived from male cohorts.”
As for pregnant women? Their absence from clinical trials means we have no clear idea or solid data on how to treat pregnant women, despite the World Health Organisation warning that many diseases can have “particularly serious consequences for pregnant women, [and] can harm the foetus”.
But change is afoot in trial design. Australia’s largest medical research grant body, the National Health and Medical Research Council, now requires researchers to “achieve balance of male and female cell and animal models, including justification where it is not warranted”.
A matter of sex and gender
Data shows that many infectious diseases affect one sex more than the other. Sometimes it’s men, as in the case of dengue fever; sometimes it’s women, as in the cases of Ebola and E-coli; and other times, it’s pregnant women (as was the case in Australia with swine flu in 2014).
And it doesn’t end there: from sleeping pills to aspirin to anaesthesia (from which women tend to wake up faster than men, and are also more likely to to experience side effects), studies show that men and women tend to react differently to all sorts of medications.
Endometriosis costs the economy $7.7bn a year, and is an extremely debilitating disease that stops many women reaching their full potential.
Dr Wainer says the scientific assumption that sex only relates to reproduction is a fundamental flaw in how we understand biology.
When studying the effects of drugs on men and women, researchers found many sex-based differences that alter the way women react to drugs.
For example, women metabolise drugs differently because they have a higher percentage of body fat, lower body weight and experience hormonal fluctuations and the monthly menstrual cycle.
Because women also digest and break down food at a slower rate, it means that medications will more often be absorbed on an empty stomach.
And because so many drugs are tested mostly or exclusively on men, scientists know little of their effects on women until they reach the market, something that Dr Wainer says is extremely expensive.
“So many scientists and medical experts don’t test on female animals and women because of the cost. What they don’t think about is the huge financial and physical cost to our healthcare system and society at not looking at sex differences,” she says.
In the US, a Government Accountability Office study found that eight of 10 drugs removed from the market from 1997 through to 2000 posed greater health risks to women.
“Just imagine the cost of taking these drugs off the market after the millions of dollars of research behind them,” Dr Wainer says.
Women’s sickness: are we doing enough?
Gender also affects the way society priorities medical conditions. This means everything from allocating funding to find more effective treatment, to understanding the symptoms and pain associated with certain conditions.
One condition that has been underfunded until now is endometriosis – a relatively common disease affecting more than 10 per cent of Australian women – in which the tissue that is similar to the lining of the womb grows outside it in other parts of the body.
Despite its severity and frequency, little has been done to find adequate treatment for endometriosis, and women like Ms Myers continue to suffer years on end, seeing crucial government funding allocated to myriad other conditions.
Dr Jason Abbott, an expert in endometriosis and a professor at the University of NSW, says we know very little about the disease that affects more than 700,000 women.
“Endometriosis costs the Australian economy $7.7bn each year, and is an extremely debilitating disease that stops many women from reaching their full potential,” he says.
Despite this, funding to find fast-track diagnosis (which on average takes 7 to 10 years from the moment a woman first goes to the doctor), a cure – or even effective treatment – is woeful, with the Australian government only committing to a national action plan for endometriosis last July.
“It comes back to whole concept that no other body system except the female reproductive system has pain as a part of its normal day to day function,” Dr Abbott says, “with than 95 per cent women experiencing pain with some periods, and 50 per cent experiencing painful periods every time.”
“And because we’ve normalised pain for women, we don’t have any fundamental understanding of what pain is, and how much of it there should be.
“Many doctors aren’t taught to clinical diagnose endometriosis, which can currently only be diagnosed surgically,” says Dr Abbott. “Education of health care providers is vital, as is education of society in general”.
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