KUALA LUMPUR, Jan 15 – “How do you manage a 9 to 5 job when you are constantly in pain or pain randomly happened (sic)? How do you commit to work effectively and perform? I find it hard to consistently stay focus (sic) and execute tasks. Can please share your experience here ladies?”
The plea above was made on Persatuan Endometriosis Malaysia’s (MyEndosis) Facebook page.
The person who posted continued: “I am going thru (sic) a difficult time trying to commit as some days when I wake up, I feel pain around my pelvis area and back…bloatedness…some days migraine and vomiting.”
She concluded her post by writing, “I also experience over thinking & anxiety & difficulty to have peace of mind.”
If the woman had lived in the 18th or 19th century and consulted a doctor describing her condition as she did in the post, she would probably have been labelled hysterical.
In the 21st century, one would presume that she is more likely to get a sympathetic response when consulting a health care provider.
That presumption would be false, according to Surita Mogan, founder of MyEndosis, during an online forum last October on Period Poverty, The Gender Pain Gap, and Endometriosis.
“(Patients who suffer from endometriosis) do experience harsh comments and many tend to feel that we are mentally unstable if we were to complain about our pain. Or sometimes if we complain about our pain, we are deemed weak,” she said.
“Some crude and harsh comments come from health care professionals as well. In fact, I myself have experienced harsh judgements.”
Wandering Womb
The historical precedence of dismissing women’s medical complaints goes all the way back to ancient Greece, when the word ‘hysteria’ found its roots in the Greek term Hysteriko, which means “suffering of the womb”.
The thinkers of the time, Plato and Hippocrates, believed that if a woman’s womb remained unoccupied for too long after puberty, it would wander throughout the body and disturb her mind.
In time, hysteria became a catch-all phrase to describe various types of aches and ailments described by women including physical pain, mental illness, and even lack of sexual desire and behaviour considered sexually deviant.
The notion of the wandering womb as the cause of illness in women persisted into the 20th century, as evidenced by the words of American obstetrician and gynaecologist Joe Vincent Meig, who, during a lecture at the American College of Surgeons in 1948, said: “What is more pathetic than the girl who married and for economic reasons can’t have a baby, who later goes to her doctor with a sterility problem that cannot be solved?”
Mieg said that because “he thinks that women who develop endometriosis are the women who delay getting married and delay their pregnancy. Therefore, endometriosis is a career women’s disease and therefore one must marry early and become pregnant,” Dr Hannah Nazri explained.
“That was in the 1940s. This is 2023. We cannot tell women with endometriosis to get pregnant to cure their disease. That is absolutely wrong.”
Endometriosis is a condition where the endometrial tissue, which usually lines the inside of the uterus, also grows in other parts of the body.
While endometriosis is mainly characterised by pelvic pain and is often associated with pain during the menstrual cycle, it can also cause pain during and after sex, when passing urine or during bowel movements, and can result in fertility issues.
“Up to 50 per cent of women suffer fertility issues and of course, there is also the psychological impact of endometriosis,” said Dr Hannah, who is a fellow with the UK’s National Institute of Health and Care Research (NIHR). “These women probably have been trying to have children and they need proper medical attention.”
Gender Pain Gap
The invalidation of women’s pain and suffering can be attributed to the gender pain gap, which refers to the bias in the way men and women are treated when they seek medical assistance.
“Men prefer to be in pain due to their self-imposed reticence, wanting to be stoic and feel strong so they wait a long time but when they ask for pain relief, they get pain relief,” said Dr Hannah.
“Women are honest about our pain but are not given pain relief because we are considered hysterical and emotional.”
Many studies have found that complaints about pain and illness from men are given more weight by medical professionals, while women’s medical grievances are more likely to be undermined and dismissed.
A study from the 1980s found that women were half as likely to be prescribed pain medication than men following surgery. Some of the women in the study were given sedatives instead, but none of the men were prescribed sedatives.
In a study looking at the treatment of acute abdominal pain in the emergency department, researchers found that women were 13 to 25 per cent less likely than men to receive analgesia. They also had to wait longer than men to be given pain relief.
A Scandinavian study found that women who presented with back pain were more likely to be diagnosed with medically unexplained symptoms, compared to men with the same complaint.
On average, women have a 50 per cent higher likelihood of receiving a misdiagnosis compared to men when they experience a heart attack, according to a 2016 study published in a European medical journal.
A survey conducted in 2020 among women with endometriosis, which takes years to diagnose, found that almost 50 per cent of them reported being misdiagnosed with a mental health problem.
Threat Of Menotoxin
The historical spectre of hysteria still looms large over the conversation on women’s health, perpetuating myths that are harmful and have serious consequences on the lives of girls and women.
Menotoxin, the notion that menstrual blood is toxic, has its medical foundation in a paper published by Dr Bela Schick, a paediatrician known for developing the diphtheria vaccine, in the 1920s.
“Basically, he had this idea that women secrete menotoxins when he received a bouquet of roses and gave it to the maid and they died the next day. The maid said, ‘of course they died because I am on my period’,” said Dr Hannah, who is also a specialty trainee doctor in obstetrics and gynaecology at the University of Warwick. “There is no scientific basis for this.”
Nevertheless, Dr Schick’s idea of menotoxin inspired other researchers who continued to study menstrual fluid and propagated the concept of menotoxin as an ever-present threat in women of reproductive age.
It was also eventually appropriated to explain all manner of pathology in women. As recently as the 1970s, menotoxin was still being discussed in the prestigious medical journal, The Lancet.
“Period Pain Can Be As Painful As A Heart Attack”
The stigma attached to menstruation has remained to this day, normalising the pain that comes with it as prosaic and typical so that those who suffer from it are afraid to voice out their pain.
“A professor of reproductive health at University College London says that period pain can be as painful as a heart attack,” said Dr Hannah, who is the founding director of Malaysian Doctors for Women and Children.
Yet, she added, because period pain is normalised, girls with terrible period pain, also known as dysmenorrhea, do not seek professional help.
The problem however is not limited to young women who are experiencing the early onset of puberty.
“Studies have also shown that there are adult women who are embarrassed about having period pain or feel like they can’t tell their employers that they can’t come into work because of extreme period pain,” she said.
“And of course, there’s a mixed reaction about menstrual leave in Malaysia. Those who are against it see it as a weakness on the part of women, which could lead to further discrimination.
“The majority see menstrual leave as a discriminatory movement as we are telling women they are not strong enough and they are not able to cope with their pain so they are weak.”
It is because of such perceptions that the discussion on period poverty needs to extend beyond products and facilities, according to Fatimah Al-Attas, coordinator of the Unit for Social Issues and Development Advocacy and Research at International Islamic University Malaysia (IIUM).
“One of the reasons we are having today’s talk is because these are some of the gaps that we don’t talk enough about: pain management, how we address some of the undiagnosed or under diagnosed conditions of menstruation and how women experience them, and the conversation around menstruation leave,” she said.
“Studies show in places where they have menstrual leave, people’s productivity has increased at work and also that it’s good for the wellbeing of people who work. So, we haven’t seen any negative implications of menstrual leave in countries and organisations that have implemented them.
“This is definitely one of those things that we have to talk about more and we have to pursue more in terms of advocacy.”
Tragic Consequences Of Period Stigma
If the stigma and issues related to menstruation are not discussed and addressed, they could lead to bogus beliefs and misinformation that have been shown to result in tragic consequences.
In Nepal, where menstruation still has sordid connotations, women who are banished to live in huts and cow sheds during their periods have died because of freezing temperatures, suffocation due to lack of ventilation, and snake bites.
A teenage girl in India, segregated in a hut because she was menstruating, was killed when a coconut tree fell on the hut during a typhoon.
Less Funding For Research On Women’s Health
More directly, the gender pain gap affects women by disregarding their need for treatments, solutions and cures for the pain and illnesses they have to endure.
“There are diseases that affect women and the disease burden is higher compared to men but the funding is a lot lower,” said Dr Hannah, who has completed a Doctor of Philosophy degree in endometriosis research at the University of Oxford.
“There is five times more research on erectile dysfunction than on premenstrual syndrome (PMS) when there’s only 19 per cent of men suffering from erectile dysfunction and 90 per cent of women suffering from PMS. Which is why we still don’t know what causes PMS.”
Endometriosis is another example, she said, pointing out that one in 10 women of reproductive age have endometriosis, which translates to about 119 million women worldwide with the condition.
“Due to the gender pain gap there is less funding to run research so we don’t understand endometriosis.
“For a very long time, the diagnostic laparoscopy, which is a keyhole surgery to look into women’s subdermal to see if they have endometriosis, wasn’t the gold standard. As a result, women had to wait six to 12 years to be diagnosed with endometriosis.”
The total annual cost of endometriosis including direct health costs and absenteeism was Euro9.9 billion (approximately RM50.76 billion) in the UK in 2009, said Dr Hannah.
“We can definitely save a lot more money if women are diagnosed earlier and receive the medical help they need.’
She added that more funding was needed for research in women’s health, particularly endometriosis, and called for a change in attitude towards period pain and stigma.
“My point is: listen to your patients who are telling you their diagnoses,” Dr Hannah said.
