Explicit

‘It’s all in your head’: Medical gender bias and Australian women

Published Dec 8, 2024, 6:05 PM

When journalists from The Age and The Sydney Morning Herald put a call out to hear from women who’d experienced medical misogyny, they were inundated with stories.

More than 500 women responded, within only 48 hours. Many said they’d had their serious diagnoses missed, at the hands of doctors and other medical professionals. Others said they’d been condescended to, or told that what they were feeling was in their head. Some said they’d only narrowly survived, as a result.

Today, health editor Kate Aubusson and senior writer Wendy Tuohy, on the invisible epidemic that has its roots in Ancient Greece, but has become, says Tuohy, like the medical version of everyday sexism.

From the newsrooms of the Sydney Morning Herald and The Age. This is the morning edition. I'm Samantha Salinger Morris. It's Monday, December 9th. When journalists from The Age and The Sydney Morning Herald put out a call to hear from women who had experienced medical misogyny, they were inundated with stories. More than 500 women responded within only 48 hours. Many said they'd had their serious diagnoses missed at the hands of doctors and other medical professionals. Others said they'd been condescended to or told that what they were feeling was in their head. Some said they'd only narrowly survived as a result. Today, health editor Kate Aubusson and senior writer Wendy Toohey on the invisible epidemic that has its roots in ancient Greece but has become, says Twohey, like the medical version of everyday sexism. So Kate and Wendy, I really want to start by asking you both what prompted you to actually investigate medical misogyny in the first place? Wendy, why don't you go first?

Oh, well, for me, it's just a very long time of reporting on women's health issues and women's safety, etc. and women's psychological well-being. And it's the stories that have stuck with me over probably 30 years of interviewing women.

Exactly. We've seen these recurring themes in our reporting, in my reporting, in our colleagues reporting about the failure to take women's pain and health concerns seriously, with disastrous consequences. It comes up again and again and, you know, it comes up in isolation. Often we'll write a story, you know, we'll take it home with us. We'll keep thinking about it. But what we now have decided to do is tackle this systemic, this huge, widespread problem. Because this is not about one woman. This is not about one dodgy doctor or even one sexist doctor, because we know the vast majority of doctors want to do well by their patients, they want to help. And some of the biggest advocates of dealing with medical misogyny are in the medical fields. And we're hoping with this project to give women voices. But also we're hoping to galvanize support within the medical community as well.

And, Wendy, you know, with the first story in this series, you and your colleagues, you asked women to to come to you to share their experiences. And it's actually prompted an unusually large response. Right. So what sort of things were women coming back and saying had happened to them?

Well, misdiagnosis due to it being considered a mental health issue when they had an authentic, various very serious underlying illness, disease or condition, very long time to diagnosis for very serious issues. Sometimes people being brushed off as, oh, you know, have some Panadol that's in your mind and it's they've got cancer. Sometimes people's cancer diagnosis being found far later because they've been brushed off. And I am not suggesting, and I don't think any of us are, that any of this is intentional. And we have spoken to doctors, and what they've said is we are trained to believe that many of the ailments, the pain, etc., and symptoms women have, which are to do with their reproductive system, you know, their different biology will so-called resolve in time. That is what they are taught still.

And Wendy, you just spoke about how many women in particular speak about having their symptoms brushed off. And then it turns out that they've actually been suffering with a really serious illness. Our colleague Asia Dow, she interviewed one woman, Niki Purtill, and she suffered really quite a horrific example of this. So can you tell me about her?

Yes. She was kind enough to share her horrific story with us for this series to help us launch it. She's a teacher. She was 25 at the time when she was in the classroom and had such a blindingly painful migraine. A pain attack that she couldn't even use her phone to ring for help. But in the next 11 months, she went to her GP ten times, asking for investigations and scans, and she was told she had Covid stress or exhaustion or whatever. So for 11 months she continued having very debilitating, really disturbing and worrying symptoms and unfortunately they were written off to psychological factors.

With a different doctor. And I just said, you know, we agree with our colleague like we just think it's Covid stress. And that's just what I kept getting told all the time. Um, keep getting told that I was young, fit and healthy because I was always at the gym.

By the time she was finally taken seriously, she arrived at her doctor with her leg dragging behind her because she couldn't actually walk properly anymore. And she said to her doctor, I won't be leaving this room without being written up for a scan. I need to know what is causing this. So she got the scan, and then she quickly got a phone call from the scanning clinic which said, look, we can't currently find your GP, you need to get to emergency right now.

Came and pulled up a chair like next to me and held my hand and said, has anyone told you what's going on? Yeah. And she just said, I remember. She spoke so slowly. My friend came in with me and she said, um, you have a mass in your brain that is the size of an orange. You are going to go to Melbourne now and have surgery. And I was just like, what?

You have a large growth on your brain. Go to a hospital now. And she she did. And she was immediately treated by.

My surgeons, came in and explained to me that I had a maximum two weeks left to live. Really? Like you could have gone home and died in your sleep that night. Oh my God.

Yeah. And the other thing is this.

Her life's been saved by surgery. However, she has long term debilitating symptoms from this. And it's just one of these. We've had 500, more than 500 testimonies now. People have been brave. They've been generous. They've want others to know that it's not an isolated incident, and they're willing to put their lived experience out there to try and help shift attitudes. Because, you know, if we look at this woman's case, she could have died simply by her symptoms being written off as mental health or exhaustion. I mean.

It's such a terrifying story that it really does give you pause. But sadly, being close to death is actually far from the only scary consequence of medical misogyny. Kate, can you tell me about Keira Rumble, who had an absolutely horrifying time? You've described her experience as one of the worst cases you've ever covered. So what happened to her?

Yeah, this one has stuck with me for a long time. So. Kiera Rumble was living on the Central Coast with her partner. She found out that she was pregnant. Almost five weeks pregnant. Very much a wanted baby. Hi everyone.

My name is Kiera Rumble. Thanks so much for taking the time to watch this video.

Firstly, she'd already been through a couple of miscarriages so she knew what that was like. It was heartbreaking, but she could deal with that pain. There was something different going on here, and she felt a sharp, stabbing pain while she was in a shopping centre and said, I need to go to hospital.

And I've just been having really bad pelvic pain and different to the cramping pain and just a whole heap of other things that just didn't seem right. And I had a heap of tests on the way to hospital.

She googled her symptoms and she thought, okay, look. Yes, pain. She has the nausea. She had shoulder to hip pain, left hand side pain. And what popped up was she could have an ectopic pregnancy, which can be a life threatening condition when the embryo lodges itself outside the uterus, so in the fallopian tube, and that could cause a rupture. It is not a viable pregnancy and it's really dangerous for the mum. So she arrived at hospital. She told them I think I'm having an ectopic pregnancy. She was immediately met with an eye roll and a well, what makes you think that? Just immediately she felt dismissed and she backed away from her own gut feeling, because that's our relationship with medical professionals. She felt, well, you know, they know best. They know what they're talking about. I have no idea. I'm clearly wrong. So they told her to sit down. They'll get to her when they could. They gave her a scan, an ultrasound, and that showed that tiny little sac in a uterus that everyone who wants a pregnancy wants to see on that early scan. And that was the end of the investigation. They went, well, that's what it is. You're pregnant. Off you pop, and off she popped and her symptoms kept rolling. She ended up going back to the hospital. She was there four times and she kept getting dismissed.

And back from the hospital. My third visit since we found out that I was pregnant. They think I've got an infection. So antibiotics. Um, I'm lifting myself up and protecting my gut with a lot of probiotics.

So tomorrow, when she was bleeding so heavily that she was soaking menstrual pads within 30 minutes, they told her this is a miscarriage. They said it's just a miscarriage. So much like Nikki, Kiera showed up to the hospital again. Basically, she got the impression that she was wasting their time and she said, I'm not leaving until you give me a referral for a private ultrasound. So off she went with her referral by herself, because she didn't want to be a burden to anyone else, including her partner. And she got this private ultrasound and she just saw the sonographers face drop. Next thing Kiera knows, two people have rushed in and said, look, you're you're bleeding internally. There's a lot of blood. You need to go to hospital. We can call an ambulance.

I've just had my scan and they've told me to go straight up to the hospital again, as I've got a lot of tissue and lot of fluid. I thought it would be okay. I feel guilty because I have so much work to do, and I feel like my body is just failing.

It was a completely different story. Then there was a whole team of people waiting for her. There was this sense of, oh, okay, yes, there is something actually wrong with you. And then she was diagnosed with, well, on behold, an ectopic pregnancy. In fact, it wasn't just an ectopic pregnancy, it was a heterotopic pregnancy, which means she did have a pregnancy in her uterus that miscarried. And then she had another embryo that had lodged in her fallopian tube. She was rushed in for emergency surgery and that was removed.

That's an update. It's been confusing for myself and it's been an ordeal. I didn't even know something like a heterotopic pregnancy could even exist. And apparently it's quite common with IVF.

What really infuriates me about this story, though, is the way Kiera was conditioned to not believe her symptoms and she started distrusting her own mind. And what's really heartbreaking is that her partner was co-opted into the perception of reality that the medical professionals held. So he started looking at her like like she was going crazy as well. So this was one of these rare dual pregnancy cases, and it took her to fight for her medical records, basically to be told what she knew all along, that she was right. She knew what was going on in her body, and she just needed someone to believe her enough to do those investigations and find out what was going on.

And so, Wendy, I want to.

Turn to you now. I mean, how widespread is this? What's the common thread that makes it a problem specific to women? You know, what would you say to listeners who might be thinking, well, how do we know this is because they're women specifically that they are not being listened to, that they are being gaslit, neglected and so forth?

Well, a lot of it comes down to people assigned female at birth have different biology than people not assigned female at birth. And we have a whole lot of organs in our body that haven't really been very well studied, and there's not much known about them. Well, that means it's not been enough study of gender specific medical issues. And, and, you know, very senior doctors will say that the emphasis hasn't been there. So that's that's a common thread, that there just isn't enough research and that women are considered to be little men by medicine or have been. And so the ideal body type for medical research into a whole lot of conditions and diseases, etc., that affect both genders is considered to be the male body type, even for drug research, you know. Well, those hormonal fluctuations might affect the findings well, also those hormones or that biological makeup could affect how your body absorbs and how effective the medicines are like. So I will just leave them to the side. It could mess things up for the for the archetypal body type, which is the male body. Now this is starting to change. So we are seeing some gradual change, but it's really because women's bodies have been considered the exception or niche. And it's quite actually almost a statement which is so ridiculous it's laughable. But and so when they do present with stuff that's not well understood or not accepted, like endometriosis pain, I've interviewed women who have before. They've finally got a diagnosis and been taken seriously, have said things like I had to pull over the car, pull over, I was driving, I was in so much pain I had to get out, throw up. And then I was in the fetal position on the nature strip before they actually, you know, that seven year journey. A lot of women with endo go through before diagnosis. It's all because, you know, we sort of just haven't been taken at face value biologically. And enough research, money, resources and emphasis put put on these issues. And this idea that women are hysterical, that we exaggerate pain or we join the dots where no dots exist. Whereas the example that Kate just gave you shows that in many instances those dots do exist. In fact, they paint a picture that needs urgent action on it.

And, Wendy, I've got to ask you, were you surprised by the statistics in the stories about just how common this is? I mean, I found some of them jaw dropping. You've got in one story from the University of Sydney. This was a study in 2018 which found that women admitted to hospitals with serious heart attacks were half as likely as men to receive necessary tests and treatments, and they died at twice the rate of men six months after discharge. So were you surprised?

Well before Victoria started its women's pain inquiry this year, that's raised a lot of these kind of public testimonies as well in this state, like the birth trauma inquiry did in New South Wales, um, the Australian Nurses and Midwives Federation surveyed their members just quickly, just to get an idea for their submission on what they see on the ground and what they experience themselves. And one of the stats that stuck in my mind was something like 73% of nurses and midwives who'd seen pain managed in a hospital setting had seen it be handled differently for men, male patients and female patients, for example, pain is verbally measured, they'd say, how's your pain out of ten and a woman with. You know, women with ten out of ten gynecological pain being given Panadol and. You know, men with with far less dramatically painful conditions be given stronger medications like endone or etc.. And another instance of a woman who'd had a full hysterectomy being given a fraction of the dose of a man in the same ward who had carpal tunnel. And it's not somebody being vicious. It's just this assumption, which actually is the reverse, is true in research. Women actually have been shown to feel pain more intensely than men. But there's a myth that because we give birth and we have periods and other sort of adventures, often in a life of, of owning these organs that we're accustomed to it, we can take it in our stride. We have a higher threshold of pain tolerance. So none of it really surprised me. It's just as someone who's interested, my whole career in human, human experience, it's upsetting. It's not surprising, but it remains upsetting.

And so Kate, Wendy's alluded to this a little bit before. But can you walk us through how we got here? I mean, do we know if there is something in particular at the root of this problem, this gender bias, I guess in in our medical system, is it systemic?

Oh, it is it is systemic. How did we get here? Oh, it's a long and winding road. Look, you could take it all the way back to Hippocrates and Plato, who? They had a term hystera, which then transformed into hysteria in the 18th and 19th century, used to basically just diagnose uncontrolled or kind of inconvenient women. It was a sort of a mental illness diagnosis. And, you know, it kind of just went along from there. I mean, hysteria as a diagnosis was only removed from the DSM, which is the psychiatric diagnostic Bible in 1980. From a physiological point of view, if you think about the fact that Leonardo da Vinci was very capable of sketching a highly accurate picture of a penis back in his day. And yet it took Wendy. You might correct me. It took till 1998 for the clitoris to be mapped.

That's right by.

An Australian urologist.

I mean, it looks like an orchid.

The gap there is just astounding. And then we have huge gaps in knowledge in terms of the medical curriculum for women's health issues. We've got huge gaps in terms of women's participation in trials. This is what we really want to explore because it is such a widespread, such a deeply entrenched bias we've got here.

And so, I.

Guess to wrap up, both Kate and Wendy, I mean, where do we go from here? Are there changes that can be made that can really help remedy everything? You've spoken about all this gender equality, which really is leading to very dire circumstances. Sometimes it comes down to life and death. Sometimes it's obviously trauma of all kinds.

Yeah, look, there are lots of places we can go from here. We have seen some real, meaningful change come about when there is this groundswell of support and groundswell of activism from women who are affected, from journalists like us, from politicians who really want to pour their heart and soul into this issue. There are practical things we can do. It was only a couple of years ago that women lost access to a really important surgery called Abdominoplasty after they gave birth, and they had that abdominal separation, which caused them immense pain and immobility, because Medicare was worried that it was being inappropriately used for tummy tucks without really without the evidence to back that up. And it was the advocacy of affected women that got that put back on Medicare. We have incredible endometriosis Advocacy in Australia, and that's what led to greater Medicare Item Allowance for people with endometriosis. It is possible there is a lot of work to be done.

And Wendy, over to you. What about the systemic solutions? I guess that that maybe we need, because I was quite shocked by one study that was cited in one of the pieces that you and your colleagues wrote. It was from James Cook University, and this was just an April. It found that there's no fixed or explicit requirement to include women's health in Australian medical school curricula, because textbooks do not account for sex and gender differences. I mean, that was a jaw dropping moment for me. Surely that's at the heart of the problem here.

And that's a brand new study from right now. We're not looking back into history here. I think it's good to remain optimistic certainly sustains me in this line of work, and I think there is momentum now. There are a lot of senior female doctors and researchers. The deputy president of Ranzcog, the obstetricians organization Nisha Kot. She's fantastic and very rational and calm and pointing out these things and saying, we can bring everyone along with us and we can make it better for women, starting with training, improving the training and women's health issues. It's happening slowly, but it's happening, I guess, frustratingly slowly. For all these women whose responses to what's happened to them are flowing into us and really affecting us. And I think they'll affect our readers who are able to engage with this content when all of it comes up.

Well, I cannot express how grateful I have been to see the pieces that you guys have poured your heart and soul into. It's that important an issue. So thank you so much, Kate and Wendy for your time.

Thank you for having us.

Thank you. And we still want other women's stories. So yes, if you have a story and you want to talk to us or you just want to share yours, please find our stories online. And yes, we read every single one of them. Yep.

Great. I second that.

Today's episode of The Morning Edition was produced by Julia Carcasole. Our executive producer is Tammy Mills. Our head of audio is Tom McKendrick. The Morning Edition is a production of The Age and The Sydney Morning Herald. If you enjoy the show and want more of our journalism, subscribe to our newspapers today. It's the best way to support what we do. Search The age or Smh.com.au forward slash. Subscribe and sign up for our Morning Edition newsletter to receive a comprehensive summary of the day's most important news, analysis and insights in your inbox every day. Links are in the show. Notes. I'm Samantha Salinger Morris. This is the morning edition. Thanks for listening.