Women have the need, men seem to have the power

Endometriosis is thought to affect one in seven women before the age of 50 and has proven to be the single most common disease among more than 2000 accounts shared by Australian women as part of our ongoing investigation into medical misogyny.

The progressive, chronic disease in which tissue similar to the lining of the uterus grows in other parts of the body causing severe pain has prompted more than 200 women to come forward, with dozens describing being turned away from emergency departments, delays in diagnosis spanning years that robbed them of the chance to have children, and having their pain dismissed as a normal part of womanhood.

Nine months ago, the Herald published the first articles in an investigation into medical misogyny – a bias that affects half of Australia – exposing the shameful cost, damage and insults inflicted on women by the institutionalised treating of one human differently whenever she sought care and treatment. 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. There were harrowing stories of women with debilitating iron deficiency or anaemia treated as hypochondriacs or whose symptoms dismissed by healthcare professionals, while others were incorrectly admitted to mental health wards or had cancer diagnoses missed.

Today, we continue the series, with our journalists Kate Aubusson, Emily Kaine and Aisha Dow reporting healthcare professionals are scandalously reliant on endometriosis research that is 30 years behind that of conditions like breast cancer, despite the number of women affected. It takes an average 6.5 years for women to be diagnosed after first experiencing symptoms.

Adding to the burden, research breakthroughs are taking years to be adopted in practice.

Endometriosis researchers and clinicians claim the most damaging and prevalent misconceptions are the reliance on a narrow list of symptoms that conceal the true extent and variation of the condition. Equally harmful is the belief that symptoms are a cyclical and inevitable part of being a woman. A 2023 Australian study of 3347 women diagnosed with endometriosis found almost two-thirds had been advised to get pregnant or have a baby to treat their condition. Many myths surround endometriosis, including that teenagers and young people do not suffer from it, hysterectomy is a cure, endometriosis only affects reproductive organs, and it is always cured by surgery.

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

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.

Meanwhile there was a “huge delay” – at least 15 years – for research findings to translate to changes in clinical practice. The challenge, researchers and advocates say, will be how effectively medical advancements can gain traction at the coalface, where healthcare workers and patients are up against decades of entrenched dogma: if a male disease proved as pervasive as endometriosis, mountains would be moved.

It is time for the decision-makers to step up: for women to be heard, treated equally and the funding gaps to be filled for chronically under-researched conditions that specifically effect women.

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