The one condition above all that counts for most episodes of women ignored by medicine

It was the size of a golf ball and threatening to rip through Olivia Phillips’ bowel.

The aggressive growth was one thin layer of soft tissue away from causing a complete rupture and potentially life-threatening sepsis.

It did not need to come to this. Over two years, Phillips had described pain that would “literally stop me in my tracks” to more than 10 GPs, a gastroenterologist and staff at a hospital emergency department.

Her symptoms were repeatedly written off as constipation.

“I was really confused,” Phillips said. “But I had seen so many doctors that I just started to believe them.”

No one had investigated the source of the pain or her intense nausea and, eventually, anaemia, Phillips said.

Not one healthcare professional raised the possibility that Phillips may have had endometriosis. Had they guessed, Phillips wondered, would they have taken her pain more seriously?

Endometriosis was the single most common disease among more than 2000 accounts of medical misogyny shared by Australian women with this masthead: more than 200 women with the progressive, chronic disease in which tissue similar to the lining of the uterus grows in other parts of the body.

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Among them were dozens who described being turned away from emergency departments, delays in diagnosis spanning years – or decades – that robbed them of the chance to have children, and having their pain dismissed as a normal part of womanhood.

One woman’s endometrial lesions had all but killed her kidney before her pain was properly investigated. Another said her symptoms were dismissed as normal, despite period pain so severe that she had fainted and knocked her front teeth out. Others were prescribed anxiety medication and diagnosed with depression with no investigation into the physical cause of their distress.

“For so long we’ve seen this gaslighting that’s described by patients, where they’ve presented to a health care provider with a set of symptoms, and they’ve been told it’s in their head, or it’s normal, when it’s not,” said Jason Abbott, professor of obstetrics and gynaecology at the University of NSW and chair of the National Endometriosis Clinical and Scientific Trials (NECST) network.

“We are still, in 2025, hearing that women are not being believed about their symptoms,” said Jess Taylor, chair of the Australian Coalition of Endometriosis and CEO of advocacy body QENDO.

“We have women calling our helpline haemorrhaging in the bathroom, and they say, ‘The GP has told me that this is normal’,” Taylor said. “Normal? How is haemorrhaging in the bathroom normal?”

The women, clinicians, researchers and advocates who spoke out for this investigation largely blame the systemic gender bias of a healthcare system rooted in medical research that has for centuries skewed male.

Healthcare professionals are reliant on endometriosis research that is 30 years behind conditions such as breast cancer, despite the condition affecting an estimated one in seven Australian women before the age of 50. It takes an average 6.5 years for women to be diagnosed after first experiencing symptoms.

Lost in translation are the research breakthroughs that take years to be adopted in practice, and doctors’ well-meaning but poorly delivered advice that leaves patients feeling dismissed.

Profound impact

By 2020, two years after Phillips first sought help, she couldn’t sleep for the pain. The 27-year-old could no longer pass bowel movements. She was vomiting so frequently that she was rapidly losing weight.

“It was the only way for my body to remove waste,” she said. “Nothing I was eating was staying down.”

A colleague, seeing her in this state, convinced her to push for a referral for a colonoscopy. It revealed a large pelvic mass compressing her bowel.

Dr Yogesh Nikam, a specialist gynaecological surgeon, confirmed Phillips’ situation was dire. The golf ball-sized mass “had obliterated the rectovaginal pouch”.

Phillips had extensive, deep-infiltrating endometriosis: the most advanced presentation of the condition.

Nikam, with a specialised team, performed emergency surgery to remove the large lesion and seven centimetres of Phillips’ bowel.

“It’s clear how profoundly your symptoms impacted your quality of life,” Nikam later wrote to Phillips, “from years of debilitating pain and multiple dismissive consultations to the extreme measures you had to resort to just to manage [your] symptoms.”

“I cried,” said Phillips, now a mother of two – Noah, 3, and Goldie, 10 months. “It was a relief that finally I knew what it was and I could fix it.”

Significant strides have been made in the past decade towards filling the knowledge gaps for this chronically under-researched and underfunded disease, due to the dogged advocacy of patients, researchers and clinicians.

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In the past year alone, Sydney hosted the World Congress of Endometriosis, UNSW announced a world-first endometriosis research institute, the federal government funded an expansion of specialised clinics and subsidised treatments, and endometriosis ultrasounds, and new clinical guidelines are expected to speed up delays in diagnosis.

But the challenge, researchers and advocates say, will be how effectively these advancements can gain traction at the coalface, where healthcare workers and patients are up against decades of entrenched dogma.

“Yes, there is medical misogyny,” said Professor Danielle Mazza, chair of general practice at Monash University and a member of the Royal Australian College of General Practitioners.

“But we have to be very careful that this doesn’t turn women away from all doctors. We should be encouraging women to seek out health care, and if they do, unfortunately, encounter misogyny, then try somewhere else.”

Diagnosis: Normal

That endometriosis is a “women’s issue” – a euphemism for women’s reproductive organs – is one of the most harmful, pervasive myths of the condition, Taylor said.

“Endometriosis is a multi-system, complex, chronic condition,” she said. “We need to crack open that conversation … so women are taken seriously when they say, ‘What about my bowel, my bladder, I’m disabled because of this condition’.”

Dr Jane Chalmers, senior lecturer in pain sciences at the University of South Australia, said the default has been to assume endometriosis pain is “just part of women’s experience”.

“It is such a common story … People are still dismissed. They have their pain normalised,” said Chalmers, who also leads the pelvic pain component of the Innovation, Implementation and Clinical Translation in Health (IIMPACT) initiative at UniSA.

For women with endometriosis, fame and near-endless monetary resources have proven to be no defence against being dismissed by healthcare professionals.

Australian conservationist and television personality Bindi Irwin had a decade-long battle to get a diagnosis. She said one doctor told her the pain “was simply something you deal with as a woman”.

“I felt lesser. I felt hurt. I felt weak. That is not OK,” Irwin, 27, wrote on social media this month. “Young girls and women shouldn’t feel alone with pain in the driver’s seat of their lives.”

Abbott said this confluence of “normal” menstrual pain with abnormal, severe and life-impairing pain is at the heart of the issue.

“As a man, if I had cyclic chest pain and I went to the emergency department, you can bet your bottom dollar that I would be investigated in a heartbeat,” he said. “Not only am I a man [who is] presenting with the pain, but I actually don’t have a system in my body that, as part of its normal process, produces pain.

“If patients are coming, and they’re relaying to us symptoms that are not being improved with current management, then you need to acknowledge and respond to that, rather than relegating it to ‘that’s a normal process’, ‘you just need to get over it’.”

Taylor described the case of a woman with endometriosis who presented to an emergency department in February with a ruptured ovary.

“They told her to just go home, take ibuprofen and paracetamol. ‘You have got pelvic pain, it should go away’,” Taylor said.

It’s a common story among endo patients when over-the-counter painkillers don’t touch the sides of their symptoms, Monica Forlano, board chair of Endometriosis Australia, said.

“Women will pass out from the pain – they’ll go to emergency and request stronger meds and be treated like drug seekers,” Forlano said.

“It all comes down to the myth that pain is women’s lot in life, and that’s what makes them the weaker, fairer sex.”

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Chalmers said the consistent theme of the report from a landmark South Australian parliamentary inquiry into endometriosis was the emphasis on improving practitioner training.

“People recognise that health practitioners are the gatekeepers. They’re the ones that someone presents to, and they are then either dismissed and normalised or they are sent on the path to recovery,” she said.

‘If I can be gaslit, anyone can’

Lindsay Tuggle’s endometriosis went undetected for more than a decade of unexplained pain, five failed IVF cycles and a succession of healthcare professionals who didn’t take her seriously, before she finally found a specialist who correctly diagnosed her endometriosis.

“People weren’t believing me,” the literary scholar and author said. “It was a dark period where I just thought, you know, I was going a bit crazy.”

By the time she was diagnosed, Tuggle said the lesions had colonised her bladder, bowel and cervix. She was 43 years old.

The excruciating pain when she sat down was caused by lesions that had wrapped around the sacral nerves at the base of her spine. Her doctors assumed this was due to her long hours working at her desk, Tuggle recalled.

“[They would say]: ‘This is about the fact that you sit for work, you’re a writer’. When, in fact, I’m very fit. I’m very active. I have a sit-to-stand desk,” she said.

Tuggle was diagnosed with polycystic ovary syndrome (PCOS) at 29 years old after initially being told by a doctor that “you couldn’t possibly have PCOS because you’re not fat”.

She was also diagnosed at 36 with adenomyosis (in which endometrial tissue grows in the muscular wall of the uterus). Both conditions are known to present with endometriosis.

“No one ever talked to me about endometriosis,” Tuggle said.

She abandoned her hopes of having children, something she believes was stolen from her by a healthcare system that failed to consider endometriosis as the cause of her unexplained pain and IVF failures.

“I’m medically literate,” Tuggle said. “If I can be medically gaslit, it can happen to anyone.”

‘Absolute absence of information’

When Professor Caroline Ford, lead researcher of Gynaecological Cancer Research Group at UNSW, began searching endometriosis literature four years ago, she found “an absolute absence of information”.

“[If] we don’t understand the basic biology of half the population and what the hell is going on, then how on earth can we possibly provide good care for people and good advice?” Ford said.

An infamous 2013 study published in one of the world’s most influential fertility medical journals judged the attractiveness of women with endometriosis without the consent of participants.

This peer-reviewed and Milan University-funded paper concluded women with rectovaginal endometriosis “were judged to be more attractive”, leaner, larger-breasted and were younger when they first had sex compared to women in control groups.

The journal retracted the paper seven years later, after sustained criticism, at the request of the authors.

“When we say ‘medical misogyny’, it’s a misogyny in funding and research,” said Dr Nisha Khot, president-elect of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG).

“Doctors can only do what they can do within the system they work in. We are relying on things that lack evidence behind them.”

The $50 million Ainsworth Endometriosis Research Institute (AERI), announced by UNSW in May and led by Ford and Abbott, is a key pillar in Australia’s world-leading efforts to fund and pioneer endometriosis research.

Chalmers said there was a “huge delay” – at least 15 years – for research findings to translate to changes in clinical practice.

“If [a practitioner] is not someone who is upskilling in that area, they will continue doing that same sort of normalisation and dismissal until they know better,” she said.

Meanwhile, unproven, unfounded medical myths have filled the void.

“[Women are] being thrown all of these ideas completely not grounded in evidence because these individual health professionals don’t have the education, and women are making significant life choices based on that,” Taylor said. “Women are not being afforded informed consent about their health, about their life choices.”

Endometriosis researchers and clinicians said among the most damaging and prevalent misconceptions are the reliance on a narrow list of symptoms that conceal the true extent and variation in presentations of the condition. Equally, the belief that symptoms are a cyclical and inevitable part of being a woman, which will spontaneously resolve in time.

Other diehard myths are that teenagers don’t get endometriosis, laparoscopy is the one-size-fits-all treatment, and that pregnancy is curative.

“Prescribing pregnancy as a treatment for endometriosis is completely untenable,” said Abbott, who is also the clinical director of AERI.

But that’s just what Rebecca Ballesteros said her gynaecologist did.

The 35-year-old has never wanted children. But when she sought help for her heavy bleeding and period pain, the specialist said she probably had endometriosis, but it wasn’t worth undergoing surgery and she should “have a baby instead. Most of the time it helps,” Ballesteros recalled.

“I was shocked and upset at the suggestion that I should have and raise a child to maybe help with chronic pain,” she said.

A 2023 Australian study based on a survey of 3347 people diagnosed with endometriosis found almost two-thirds had been advised to get pregnant or have a baby to treat their condition, the vast majority (89.4 per cent) by a healthcare professional.

Sylvia Freedman, co-founder of EndoActive with her mother, Lesley, and a study co-author, said this advice was often given to patients when they saw their doctors for pain management.

“It should have absolutely nothing to do with having a child,” Freedman said. “It’s completely unethical and inappropriate.”

Meanwhile, endometriosis can cause infertility. It’s estimated 30 to 50 per cent of women with the condition struggle to get pregnant.

Abbott said pregnancy may temporarily reduce endometriosis symptoms because it paused a woman’s menstrual cycles, “which the pill can also do”, combined with high progesterone levels and other “happy chemicals” produced by the body as it prepares for childbirth.

“But as soon as that all stops, symptoms return,” Abbott said. “Then you’ve got the endometriosis pain, and the baby, which is a lifelong commitment, certainly not just a prescription.”

Mazza said it’s probably the case that some doctors are not fully explaining why pregnancy may alter the course of the disease.

“I think the problem is in the delivery,” Mazza said. “It’s not that you’re necessarily advising women to rush out and get pregnant, but it’s helping the woman to understand that things that suppress or stop you from menstruating will likely improve endometriosis symptoms, and one of those things is pregnancy.”

For Abbott: “the best period is no period”.

‘We will cut you open, we will cut it out’

For some women such as Ballesteros, who spent a year on a public hospital laparoscopy waitlist, surgery can be life-changing.

But Dr Pav Nanayakkara, a gynaecological surgeon at Melbourne’s Jean Hailes for Women’s Health, said endometriosis could often be linked to numerous conditions such as irritable bowel syndrome, meaning treatment may need to be multipronged. She had encountered patients who had laparoscopies, but had been “just left” when the procedure didn’t fix their pain.

“One of the things that makes me sad is when patients say they underwent a procedure that they didn’t feel comfortable with, or they didn’t understand what happened to them,” she said.

“Losing trust in the health profession is a really sad thing because then diagnosis can be delayed [and] problems can become more severe.”

Chalmers said the overreliance on surgery – with its associated risks and long, often arduous recovery times – was a clear example of medical misogyny.

“It’s just ‘we will cut you open, we will cut it out, and you will get better.’ ”

Abbott said too many women are given no other option.

“I certainly see patients who respond to surgery, and then the disease comes back, and it doesn’t respond to medication, and all we can do is more surgery,” he said.

Surgery is “the law of diminishing returns”, Abbott said. “One surgery, we know, can be efficacious. Two surgeries, certainly. But I hear stories and I see patients where they say, ‘I’ve had 30 surgeries and I’m 30 [years old]’. That is way too many. They are quite clearly not responding to surgery.”

In a major step towards more timely diagnosis and treatment, a new guideline published by RANZCOG in May overturned reliance on surgery to diagnose endometriosis (formerly the gold standard), recommending transvaginal ultrasound as first-line investigation for patients with symptoms.

The guideline also advised clinicians to offer women first-line treatment (in the form of hormones such as the contraceptive pill and intrauterine devices) while they waited for a diagnosis, as well as painkillers, physiotherapy and psychological support.

“It makes the whole pathway simpler and more accessible,” said Mazza, who was the RACGP representative on the guideline’s development group, and is working on a management plan to help GPs structure consultations with patients that reflect the guidelines.

But a complicating factor, Mazza said, was that many women can feel dismissed by doctors who offer hormonal treatments amid a global movement of women moving away from using hormones.

“Maybe that’s because the GP isn’t explaining why hormonal treatments are being recommended … but I think there needs to be increased awareness in the community that hormone therapies can be very beneficial for a range of conditions,” Mazza said.

One reason for this shift is the growing evidence of an association with the side effects of hormonal contraception, most commonly low mood.

If women aren’t responding to hormone treatments or are experiencing side effects, Abbott said simply giving them more is not the answer.

Dr Bridget Dickenson, a general practitioner at Jean Hailes for Women’s Health, said she would commonly see women who had been on the contraceptive pill for up to a decade, who, when they come off the pill (perhaps to have a baby) have a resurgence of terrible pain and bleeding.

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“They may get diagnosed with endometriosis, and they have the perception that the pill masked their symptoms and delayed their diagnosis, when the pill was just doing a great job of treating the symptoms,” Dickenson said. “This is always a bit of a conundrum.

“I always have a conversation when starting these treatments, that in five to 10 years, it may be that you are diagnosed with something like endometriosis. But that just means this treatment has been working for you.”

If pain and bleeding can be well controlled by hormonal treatments such as the pill, with no side effects and no symptoms of deep-infiltrating endometriosis, it can reduce the number of surgeries (and complications such as adhesions) a woman has over her lifetime, Dickenson explained.

The key is regular follow-ups to ensure the woman is happy with the treatment, she said.

Fundamentally, Mazza said, doctors are products of their society.

“Where society doesn’t value women, where women are seen as just reproductive bodies and not given respect, that doubtless filters through into consultations with patients,” Mazza said. “There’s a lot of levels where misogyny comes into play.

“Does the system work against women? We don’t have the full range of contraceptive options available on the PBS, ultrasound scans are rebated less than scrotal ultrasounds, hospitals may not have enough gynaecological services when half the population may need them.”

However, Mazza said: “There are fantastic doctors who do great work, and thank goodness for that.”

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