‘Wild with rage’: It took Jacinta Allan more than a decade to learn the source of her pain

Since she was an adolescent, Jacinta Allan has lived with a pain that some – including one high-profile radio host – claim to be “made up”, but which for many women is life-altering.

Each month, she had periods and pelvic pain so heavy that she couldn’t participate in favourite activities, like sports, and was confused by her suffering.

Premier Jacinta Allan had heavy and drawn-out periods as a young person, later diagnosed as endometriosis.Credit: Simon Schluter

“Ever since I was a teenager getting my first periods, I always had the experience well known to women who have lived with this: the heavy periods, the long ones, the pain you kind of just put up with,” says the Victorian premier, who is now 51.

Like many other women with what was eventually diagnosed as endometriosis, it took more than a decade for her disease to be identified. Even then, it was by chance, after Allan poured her heart out to a friend at a wedding about her unexplained infertility.

“She started to grill me about my period experience and said, ‘Why haven’t you been checked out for endometriosis?’ She had that experience as well,” says Allan.

Being validated by doctors was relief “that my pain was real, and I did deserve help”.

“Thinking back to … what I’d missed out on, day-to-day things I couldn’t do, it was overwhelming to know that my pain was real and that help was on the way.”

More Australians have endometriosis than diabetes, but a lack of funding for research and medical training about it – part of what Victorian Health Minister Mary-Anne Thomas and Assistant Minister for Social Services Ged Kearney have dubbed medical misogyny – has left thousands distressed by the absence of good medical help.

The chronic disease causes tissue similar to the womb lining to grow elsewhere in the pelvis, or attach to other organs. It often causes extreme pain and sometimes compromises other organs.

“Endo” costs the economy an estimated $9.7 billion annually, largely in women’s reduced work participation. It costs patients an average $30,000 a year each, University of Western Sydney research has found, in healthcare and lost work.

The disease can cause heavy, irregular bleeding, pain during sex or bowel movements, infertility, cysts, and, in the worst cases, can lead to renal failure or bowel obstruction, yet until this year, it has received a fraction of the research funding for diseases with comparable impact.

Dr Marilla Druitt, the co-author of sweeping, new diagnostic and treatment guidelines released by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists in May, says funding for endo research has remained “wholly inadequate if you compare it to other conditions”.

The Australian Institute of Health and Welfare estimates that more than 1 million people are affected by endometriosis, thousands of whom testified to the nation’s first inquiry into women’s pain, held in Victoria last year.

Many said they felt dismissed, belittled or had been told by doctors that crippling pain was psychological or due to their personality. Health Minister Mary-Anne Thomas has warned the inquiry’s report, expected in June, will make difficult reading for medicos.

The premier found the volume of submissions “staggering” and blames “layers of guilt and secrecy” for women feeling that, until now, they needed to stay silent about suffering bad enough to stop them from working – or even leaving the house.

As personal submissions hit 12,000 (eventually surpassing 13,000), Allan sat in on roundtables where she says women’s medical horror stories made for tough listening. Allan subsequently decried the treatment of girls and women by the health system in parliament.

“That is 12,000 women and girls who have had their pain overlooked, underdiagnosed, dismissed and even ignored … and told their pain – for some, life-altering, debilitating pain – was normal, was routine or was all in their head,” she said.

Her timing is on point. A growing community of activist endometriosis patients – and their parents – have made the condition a political issue, propelled by posts from the “endo warrior” influencers who have normalised discussion of their excruciating reality.

When since-axed FM radio host Marty Sheargold said on air in February that “ladies carry on” and “endometriosis is made up”, the premier was only one of many patients to hit TikTok in fury. She described her reaction as “wild with rage”.

Former Liberal MP Maree Davenport has become one of the strongest national voices fighting poor responses to women by the medical system, demanding more money and training for doctors in women’s pain and endometriosis.

As Australian Institute of Health and Welfare data revealed last week that the number of endometriosis-related hospitalisations increased by 54 per cent in the decade to 2022-23, with admissions up from 28,700 to 44,200, Davenport was at the World Congress on Endometriosis in Sydney.

Endometriosis in Australia

• About 1 in seven women (14 per cent) born in 1973–78 were estimated to have been diagnosed with it by age 44–49, and the average gap between onset of symptoms and diagnosis is six to eight years. (AIHW)
• Symptoms can include: high levels of chronic pain, particularly pelvic pain, painful periods, pain during or after sex, pain during bowel movements or urination, excessive bleeding, infertility.
• Found by Australian research to cost suffers an average $30,000 a year in healthcare and missed work. (Western Sydney University)
• Estimated by the Australian government to cost the economy $10 billion a year.
• Historically under-recognised and research under-funded despite being a common condition with similar patient numbers to diabetes. (National Action Plan for Endometriosis)

She advocated for a funding extension to the five-year LongSTEPPP Project, an initiative led by the Murdoch Children’s Research Institute and the Royal Children’s Hospital focusing on teenagers with endometriosis, period and pelvic pain, which aims to improve pain management.

Having lived through horrendously drawn-out diagnosis for her daughter since she was just eight years old, Davenport remains angry at how women in serious pain are treated in a system she describes as prone to misogyny.

“We had visits to the emergency department where we were treated as if there was nothing wrong, we were ‘overreacting’. I felt gaslit and unheard. There was very little understanding or sympathy for her as child, a teenager, a young woman,” says Davenport. Her book, The Australian Guide to Living Well With Endometriosis, came out in February.

“Even in recent times when we’ve needed to take her to emergency with things like burst cysts, the lack of empathy and understanding and even sympathy from doctors in an ED environment shows the lack of knowledge.”

Davenport is optimistic that the new RANZCOG guidelines could provide a much-needed turning point.

The 200-page document acknowledges that “endometriosis is often under-recognised and diagnostic delay may have a substantial impact on quality of life of the individual, their family, their partner and carers”. It strongly recommends offering transvaginal ultrasound or MRI by gynaecological imaging specialists as a first-line procedure for those suspected to have endometriosis.

This is an update on the traditional theory that laparoscopy surgery– for which many women say they have had to fight, having had their pain dismissed – is the “gold standard” of diagnosis.

The new guidelines provide a flow chart recommending patients get symptom treatment even before a diagnosis is established. Along with hormonal treatment, it recommends analgesics, physiotherapy and psychological interventions as first-line options.

It acknowledged Australian data showing “almost half of people with endometriosis were dissatisfied with their treatment”.

Even after then-health minister Greg Hunt announced the national action plan in 2017, Druitt says the condition is not getting the attention it needs.

“Endometriosis is not on the map. Maybe we haven’t done a good enough job to put it on the map, but since the National Action Plan, the needle is moving in the right direction … We are going to make a good effort to ensure there isn’t a gender imbalance in terms of research funding,” she says.

Recommendations about multidisciplinary care for patients, and taking a “biopsychosocial” approach by treating them as a whole person, should lead to better experiences for women, and more effective pain management.

‘Women’s pain is real, and it’s time we stop telling women to just suck it up.’

Mark Butler, Health Minister

The RANZCOG living evidence guidelines noted many endometriosis patients have assumed their suffering should be concealed, and Druitt, who is on the Victorian pain inquiry, says women are only now rejecting that.

“We just got to the era where women are sick of being dismissed and ignored; so there’s just this outpouring of ‘why aren’t you listening to my suffering’ in all areas,” Druitt said. “Also, they are now in a position to say something [thanks to social media breaking down women’s health taboos].”

The causes of endometriosis remain mysterious because it is not caused by a single gene mutation but is a “multi-genetic disorder, and probably there are a whole range of other things that contribute” – and research into exactly what those are has been lacking.

After the Ged Kearney-driven #EndGenderBias women’s health survey – to which two out of three among 3000 respondents said they had experienced gender bias and discrimination in the health system – and the subsequent National Women’s Health Summit last year, the federal government announced PBS listing of a new medication to shrink endometriosis tissue, Visanne.

From July his year, women will have access to subsidised GP appointments of 45 minutes or more to discuss endometriosis and complex gynaecological pain.

Federal Health Minister Mark Butler says: “Women are suffering unnecessarily. They’re having their experiences dismissed, being called hysterical and accused of drug shopping. Women’s pain is real, and it’s time we stop telling women to just suck it up.”

On May 20, Sydney pokies billionaires, the Ainsworth family, made the world’s biggest single philanthropic donation to endometriosis research to accelerate diagnosis and targeted treatment.

Professor of obstetrics and gynaecology Jason Abbott, clinical director of the new Ainsworth Endometriosis Research Institute at the University of NSW, said the money would help address a 30-year lag in science investment for the disease and an inadequate one-size-fits-all approach.

As the Victorian government prepares to release its report into handling of women’s pain, Jacinta Allan warns that the raw stories of health experiences from women in it are “hard to read”.

“We heard from so many people who had never been part of a process like this, and it’s not ‘stories’, it’s lived experience,” she says. “There is [in the report] deep empathy for the person who’s shared what they’re going through. It fuels that determination to do something about it.”

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