Fi Macrae always wanted to own a cafe. “I had it in my head that, by 30, I would have my own little cake shop where people could come and feel good and hang out and eat cake,” she says. For her, hospitality was about bringing people together.
While working as a baker, she volunteered teaching kids how to cook from the garden and affectionately recalls what an energetic, “turbo” young thing she was. “It was my entire world,” she says. “It wasn’t until my early twenties that I started getting pretty painful periods and painful sex. I just thought, ‘Oh, now I get what everyone else has been talking about’.”
By 2017, her periods were becoming unbearable and she sometimes had to cancel shifts at her physically demanding job. Her doctors discovered a cyst and Fi underwent surgery in September 2018.
“I thought the removal of that cyst would be the end of my pain. I can get back to making beautiful cakes,” she says. But the pain did not go away. She was back on the operating table the following June after which she received a diagnosis of endometriosis.
“I pretty quickly realised there was no way I was going to be able to continue to do hospo and very sadly had to leave that job,” Fi says. What followed was a demoralising, exhausting and frustrating process of trying to find help.
“At the beginning it was, ‘It’s probably nothing serious’. So, you downplay it yourself. You go, ‘Oh gosh, I’m really complaining over nothing’,” she says. But it wasn’t nothing. At its worst, her pain would make her vomit and stop her from sleeping. She recalls one instance when she presented at hospital in agony, not long after having had a laparoscopy.
“The doctor just point blank said: You’re not in that pain and I think what we need to do is get you on mood stabilisers.
“Being in physical pain is one of the most gruelling things … Then within the women’s health space you also have to make people believe you,” Fi says.
“I do think that comes from [attitudes that] women are hysterical, and I don’t think we’ve moved past that yet.”
Two recent Australian surveys reveal that Fi’s experience is “an all-too-common occurrence” but the health care gender gap is a problem that governments are only just starting to confront.
The Victorian government is conducting an inquiry into women’s pain, which Fi is co-chairing, after a survey found four out of 10 women live with chronic pain that effects their health and wellbeing. Women told the survey they often felt disbelieved and dismissed by their health care providers. One-third of respondents reported “insensitive and disrespectful practitioners who left them feeling stressed and frustrated”. Ten per cent said their health practitioner did not know enough about women’s health to provide high-quality care and advice.
“Some said they felt ‘gaslit’ by their health care provider, and shared their distress when health concerns and pain were attributed to mental health conditions,” the report said.
“Many women talk about how their health conditions have been ignored or they’ve been given a Panadol. Go lie down. Or it’s been misdiagnosed,” says Victorian Premier Jacinta Allan.
“I had a message a few weeks ago from a friend who told me a story about her daughter, who last year had her appendix out but was still having a raging fever. When the fever went away but the pain didn’t, the medical response was, ‘Maybe you’ve got some mental health issues’.
“This year she’s been diagnosed with stage two endo and she’s had the procedures to treat endometriosis,” the Premier says. “That’s just one example of so many that we know are out there where women’s health has been either misdiagnosed, misunderstood, or it’s been, frankly, ‘Nuh, there’s nothing wrong with you. Just go have a Panadol and a lie down’.”
At a federal level, the #EndGenderBias survey found two-thirds of women reported gender bias or discrimination while seeking health care. Assistant Health Minister Ged Kearney, who started her working life as a nurse, says gender bias is deeply ingrained in the health care system, which was designed by men, for men.
“It doesn’t mean there’s a whole lot of doctors out there who are trying to harm women. It just means the system is inherently misogynistic [in] the way it’s developed over the centuries,” she says.
“I trained back in the early ’80s, so there weren’t as many women doctors or surgeons around. When I look back now, I think, ‘Oh crikey’. I feel a bit guilty. I probably could have spoken up in many cases. But now that I’m in this position, I’m in a place to pay it back and make a difference.”
Of the many stories Ged has heard, one that really stayed with her was of a 70-year-old woman who had gone to her GP because she was having severe abdominal pain during sex.
“This young male doctor said to her, ‘Well, what do you expect? You’re 70 years old … of course it’s going to be painful,” Ged says. The woman felt so “humiliated and upset and belittled” that she went home. Three days later she was admitted to hospital with a ruptured appendix. “It was extraordinary. I nearly cried for her when she told that story,” Ged says.
Other women have reported being told, “‘Oh, you’re just fat. Go home and lose weight.’ When they have polycystic ovarian syndrome or something that is really affecting their metabolism. It’s really heartbreaking when you hear it,” Ged says, exasperation in her voice as she returns to the woman who was shamed for being sexually active. “Why are you having sex at 70? I mean, honestly.”
The example is telling. Shame, Ged says, is a significant barrier to care. Patients seeking relief from the agony of endometriosis have been accused of drug dependency and doctor shopping.
“They come back every month to get pain relief from a doctor, and they say, ‘You just want the drugs’. That must feel terrible,” Ged says.
Fi Macrae experienced this “countless times” when she asked for stronger pain relief. “The tone that can come back at you, and the patronising nature of, ‘You do understand that these drugs are really addictive, and we don’t think we can do that for you’ … To be met with that stigma is really ostracising for a lot of people.”
“The doctor said: you’re not in that pain… we need to get you on mood stabilisers”
Fi Macrae
The shaming of women breeds silence which reinforces the stigma around women’s health issues. Ged gives the example of menorrhagia, extremely heavy periods, which she suffered during her perimenopause.
“You’ve constantly got stained clothes,” she says. “You never know when you’re going to have a heavy flow that will go down your legs and embarrass you, fill up your shoes, and that is incredibly embarrassing and shameful to the point where I would just not leave the house. I thought that I’d have to give up work. It was terrible.”
Before she was elected to parliament, Ged was President of the Australian Council of Trade Unions. That the menorrhagia made her consider resigning shows how damaging the health care gap is.
While chronic pelvic pain, period pain, endometriosis, menopause and perimenopause, and complications from childbirth loom large in the Victorian and federal surveys, the issue is not confined to reproductive health. NSW Central Coast woman Jen O’Neill was a 36-year-old breastfeeding mother when she had her first heart attack in 2016, and she says the fact that she didn’t look like a typical heart attack sufferer led to delays in her diagnosis and treatment, and being given prescriptions that were not suitable for women.
“I remember sitting in an open ICU ward that was dominated by male patients, with a breast pump, asking for an angiogram so that I could get home to my babies,” she recalls.
She had been at home with her husband and two sons when she began experiencing pain in her left arm and left breast, and so went to hospital.
“The medical team were confident, as was I, that this was simply stress or a panic attack.” However, she had elevated troponin levels so she needed an angiogram before she could be discharged. Because she did not fit the profile of a heart attack patient, her procedure was delayed.
“Halfway through the procedure the medical staff began rushing around and talking in hushed tones,” Jen says. “I was crying, thinking: I can’t have something wrong with me. I’m breastfeeding a baby.”
Her cardiologist told her she had spontaneous coronary artery dissection, or SCAD, which occurs when a tear forms in the wall of a heart artery. SCAD can cause heart attack or sudden death, and women in their forties and fifties are the highest risk group. Jen says her cardiologist “was extremely knowledgeable and experienced in traditional heart attacks” but Jen was “terrified by the limited information and lack of research not only into SCAD but into women who had had heart attacks.
“I was popped on traditional heart attack medication – blood thinners, beta blockers, BP meds – even though I didn’t have high blood pressure,” she says.
“This medication had been thoroughly researched with male patients. The impacts of the medication as a young woman were quite tough. The fatigue was horrendous. I would bruise extremely easily, my periods were extremely heavy. It was hoped the medication would prevent further heart attacks. It didn’t.”
Four years later, in 2020, she had another heart attack while she was at work. “I did overhear one of the nurses tell the transport team in handover, ‘She thinks she’s had another heart attack. I think it’s just a panic attack’,” Jen says. She had a third attack in 2022. She has nothing but praise for her cardiologist, but her story demonstrates how biases that are woven into health care have real and serious consequences.
“Disregarding someone who doesn’t look like a heart patient causes delays in treatment and proves detrimental,” she says.
Ged believes that undoing the deep-rooted systemic biases in health care will be an immense job. “The woman’s body was seen as ‘other’,” she says. “In fact, one doctor is very famously quoted as saying, ‘Well, we can’t have specialty guidelines for every minority, can we?’ Actually, women make up 51 per cent of the population so we are not the minority.”
Ged chairs the National Women’s Health Advisory Council which was established last year to advise the government on how to better improve outcomes for women.
“People were showing me research that, because traditional trials of drugs were only done on men, a lot of women were being over-medicated, and this was causing serious problems. Hip prostheses were designed for men and just scaled down for women, and women rejected them because women’s pelvises were a different shape to men’s.”
The US Food and Drug Administration banned women from participating in clinical trials until 1993. “They always talk about the reference patient who is basically a 50-year-old white, heterosexual man from Pennsylvania,” Ged says. “Everything from symptomology to care guidelines, everything really, was designed for and around the male body.
“I found a stat the other day that you’re half as likely to get an organ transplant if you’re a woman. So, what’s that about?”
The problems that arise out of focusing on male physiology are exacerbated with other layers of deviation from the city-dwelling white man. Anyone seeking care in rural and regional areas faces barriers of accessibility. One woman told the #EndGenderBias Survey: “I have no choice if I want to see a [medical specialist] locally. She is only available every six months and one of those appointments will be by telehealth.”
Migrant women and culturally and linguistically diverse women have some of the lowest rates of participation in breast and cervical cancer screening.
Worimi woman and the Chair of the First Nations Women’s Health Committee, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG), Dr Marilyn Clarke, says Aboriginal women face barriers to care because of their First Nations status as well as their gender.
“We have known for a long time that there is health inequity built into the system … the need is greater and there’s more systemic barriers for us to access the care that we need,” she says.
“Disregarding someone who doesn’t look like a heart patient causes delays in treatment.”
Jen O’Neill
Hospitalisation rates for Aboriginal women with endometriosis are lower than non-Aboriginal women, suggesting the barriers to care that Fi Macrae articulated are more severe for Aboriginal women.
Cervical cancer rates are three times higher in Aboriginal women, which is particularly sad because it can be almost entirely prevented with good screening and care. “So, when we see that huge disparity, there’s a problem with the system,” Dr Clarke says.
Distance and the availability of services, specifically bulk billed services, are also barriers to care. As is racism. “Racism can play a part in how care is delivered, and pain is a great example,” Dr Clarke says. She mentions the case of Wiradjuri woman Naomi Williams, who presented to Tumut Hospital in south-western NSW when she was 22 weeks pregnant, reporting pain and vomiting. She was given Panadol and sent home. She died of septicaemia shortly after, at the age of 27.
Dr Clarke says she hopes the government and people in power will continue to work with Aboriginal people “rather than trying to come up with answers without us”.
Given the gender health gap issues are so pervasive, why are they only being addressed now? Jacinta Allan says it’s “really a product of having more women in parliament”. Like Ged, her own experience has informed her conviction for change. She tells The Weekly that she experienced painful and heavy periods from a young age but didn’t know what endometriosis was.
“It was the ’80s. I got a bit of advice from Dear Dolly [Doctor], but it wasn’t something that you talked a lot about,” she says. “Certainly, the heaviness and the pain that I had … it really was never something that I shared with people.”
It was a tearful conversation with a friend at a wedding that led her to a diagnosis of endometriosis.
“It was probably around the time of thinking about wanting to have kids,” she says. “That wasn’t easy and it was also a very – you know … it becomes a very emotional time. You begin to question what’s wrong with you, what’s wrong with your body? All of those things.
“I got a bit upset talking to a friend, and I was telling her about what I was experiencing, and she said, ‘You need to go ask your doctor. You need to check.’ Because one of the things that was holding her back from having kids was her severe endometriosis. So, I took her advice.”
The Victorian Premier says that, happily, she was diagnosed and treated. She now has two children. But, as with Ged’s experience, the fact that a member of parliament had struggled to find medical help shows how insurmountable the barriers to care were and still are.
Work is underway to change things. The Victorian government has opened five of 20 dedicated women’s health centres to further build on a $153 million women’s health package that is delivering specialist care.
A national research hub, The Centre for Sex and Gender Equity in Health and Medicine, was officially opened in March with the aim of dismantling the “one-size-fits-all male-centric approach to medical care”.
Dr Clarke says she’s optimistic things can improve. “There’s been a blindness to what’s going on for a long time. Even just talking about it is a step in the right direction.”
“It speaks to why parliaments should reflect the communities we are there to serve, because we serve them better,” says Jacinta. “Women’s pain not being treated appropriately holds women back, and that’s not right.”
