‘Almost killed me’: 1000 women dismissed, left in pain and misdiagnosed

They’ve been dismissed, disbelieved and misdiagnosed. At best, they’ve been left to suffer in silence. At worst, the outcomes have been catastrophic. And now, they’re demanding change.

That’s the damning indictment of Australia’s health system presented by 1112 women who have responded so far to The Sydney Morning Herald and The Age’s survey on medical misogyny.

More than a thousand women have shared their disturbing encounters with the medical system as part of an investigation into medical misogyny.Credit: Marija Ercogovac

The callout sparked a national outpouring of grief and frustration from women whose encounters with the medical system have left them feeling like second-class citizens.

Their medical complaints ranged from ectopic pregnancies and gallstones to cancer and sepsis. But striking similarities emerged, as women shared their painful and humiliating experiences of not being believed and turned away from care.

In some of the most disturbing accounts, women nearly lost their lives or the lives of their newborn children as a result.

The survey did not seek to reflect the full breadth of women’s experiences with the Australian healthcare system but rather provide a snapshot of the experiences of women who believe they have been subject to medical misogyny.

On Thursday, three weeks after the launch of this masthead’s campaign, the federal government pledged an additional $550,000 to the National Women’s Health Advisory Council to continue its work to improve the healthcare system for women and girls.

Dismissed, delayed or misdiagnosed by the medical system

Feeling dismissed or ignored when seeking healthcare was the most frequent complaint and a near universal concern for respondents (94 per cent).

In the most harrowing cases, the consequences were nearly fatal, including for one 38-year-old woman from North Sydney.

“When I presented to the GP six weeks into the pregnancy, my usual GP was away, and my concerns were brushed aside and dismissed. I felt I was made out to be dramatic.

“Four days later I nearly died from ectopic internal bleeding, losing three litres of blood into my abdomen, being rushed to hospital only after I passed out.”

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Tell us your stories

As part of the medical misogyny investigative series, The Age and Herald will examine these claims in more detail, conduct personal interviews and investigate what is being, and should be done to improve services for women.

You can share your story with our team of health and investigative reporters using the form below.

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In some cases, it took decades for respondents to receive a diagnosis, with 85 per cent citing delays among their experiences.

A Victorian woman, 59, said it had taken her 35 years to receive an endometriosis diagnosis after doctors disregarded her pain and told her she needed to lose weight and do more exercise.

“I had to beg to be referred to a gynaecologist, after 34 years of unrelenting pain. By this stage, my periods were almost permanent, as was the pain in my abdomen, bladder, bowels and back. I then had to beg for a hysterectomy. When it finally happened, I was told that I had a ‘frozen pelvis’, that my uterus, ovaries, bladder and bowel had been distorted and fused together. My surgeon yelled at me for not having this surgery done 20 years earlier.”

A sweeping majority of women (881 respondents) reported a misdiagnosis by a doctor or healthcare professional. One reported her gallbladder stones being misdiagnosed as period pain.

“The misdiagnosis almost killed me as the entire organ was blocked with one large stone.”

Pain swept aside

Almost half (44 per cent) of respondents reported having pain dismissed or disregarded, before it became apparent the underlying cause was a serious or even potentially fatal condition.

Women recounted being told their pain was “in their imagination”, that excruciating pain was normal, being “mocked”, told they had “low pain tolerance” and being offered antidepressants or referred to psychologists.

They subsequently discovered the source of their pain was cancer, ovarian torsion, ruptured ovarian cysts, sepsis, kidney infection, ruptured ligaments, broken bones, kidney stones, a heart attack, a burst appendix, a perforated bowel, ectopic pregnancy, post-operative bleed, stomach ulcers, pneumonia and acute pancreatitis respectively.

Many women described their male partners’ pain being taken more seriously than their own, with men offered opioids to deal with pain that women were told should be handled with paracetamol. Women also described nearly passing out while undergoing intrauterine device (IUD) insertion and endometrial biopsies without pain relief.

“Doctors consistently dismiss what you’re saying. In emergency, unless you’re screaming and carrying on they refuse to give real pain medication. Even when you are screaming, they might think you’re a drug seeker. My male partner gets offered morphine in emergency. I get offered Panadol for the same condition and type of pain.”

Reproductive health concerns dismissed

Another recurring theme was the failure to investigate reproductive health-related issues.

Endometriosis, adenomyosis and polycystic ovary syndrome (PCOS) were the most frequently reported conditions, with 12 per cent of respondents having experienced dismissal when presenting with symptoms of one or more of these conditions.

Women who suffered from these three conditions were routinely dismissed by doctors and specialists, told to “lose weight”, “go on the pill”, or even advised that falling pregnant was the only solution to their pain.

When presenting with symptoms of what was later diagnosed as endometriosis, 108 women said they were dismissed by a doctor or specialist.

In multiple instances, an earlier diagnosis could have made the difference between a woman being able to have a child or not.

One NSW woman, suffering unexplained and undiagnosed uterine bleeding, was told by a fertility specialist, “If your GP had taken your concerns seriously, you might have more viable options”. By then, she was already infertile.

Women turned away from emergency

Six per cent of respondents reported being dismissed by emergency departments without receiving sufficient or appropriate treatment.

Some women presented to emergency multiple times with the same issue but were repeatedly dismissed. Often, they were not believed about their pain and symptoms.

“Gaslighting” was reported to be a common occurrence across all sectors of medicine, but posed deadly risks in medical emergencies.

“Ectopic pregnancy that went unnoticed for 11 weeks. I no longer trust emergency rooms, I have a fear of blood now. Had to be on hormonal birth control for over a year to get my cervix to heal from the wound the ectopic pregnancy left. Have not been able to conceive a healthy pregnancy since.”

Told to lose weight

Forty-two respondents reported that their GPs instructed them to “lose weight” instead of properly investigating their complaints.

They were eventually diagnosed with maladies including hand, finger and ankle injuries, thyroid disorders, a bulging disc, chronic fatigue syndrome, Cushing’s syndrome, lipedema, endometriosis, adenomyosis, hypermobile Ehlers-Danlos syndrome and autoimmune encephalitis.

In four of the gravest cases, women who were told to lose weight received significantly delayed cancer diagnoses.

“I had felt unwell for many years, my female GP dismissed my symptoms as menopause and stress. When I saw her colleague one time he just told me to lose weight … the lung specialist diagnosed long COVID and told me I was obese and needed to lose weight. I explained to him, as I had to my GP, that I had tried everything to lose weight and it wouldn’t shift.

“It turns out that one of the tests the lung specialist ran was a CT scan of my lungs. The report noted a 3cm tumour on my adrenal gland.”

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