The first inquiry of its kind into women’s pain in Australia has found widespread experiences of dismissal, disrespect and inadequate treatment in the health system coupled with limited local and international research into women’s health.
The inquiry was conducted by the Victorian government’s Women’s Health Advisory Council and a panel of experts between January and October 2024.
It examined barriers to accessing care, the effectiveness of current services and the reforms needed to improve pain management and healthcare outcomes.
There were more than 13,000 responses from Victorian women and girls, clinicians, researchers and peak bodies.
“The results can make for difficult reading,” Health Minister Mary-Anne Thomas said on Sunday while releasing the inquiry’s report.
“The most common conditions that women are experiencing include period, pain, endometriosis and arthritis.
“The report goes on to tell us that the impacts of these are not just the physical pain itself, but this leads to poor mental health, fatigue, poor sleep and low self-esteem.”
The report found a health system built around the biology of white males left many women without effective diagnosis and treatment. (Supplied: Endometriosis Australia)
The report found 90 per cent of respondents experienced pain that lasted over a year, with half saying they were experiencing it daily and a third saying they were in pain constantly.
Women with disabilities and from the LGBTIQA+ community reported higher rates of prolonged pain.
The report found the healthcare system was built around “Caucasian male biology”, making it difficult for women and girls to access care and support for pain.
It said historically low investment in women’s health research left many without effective pain relief or treatment, causing their symptoms to worsen and forcing them to spend substantial amounts of money on therapies, some of which may not work.
“Many medical models and clinical guidelines overlook sex and gender differences, leading to gaps in diagnosing and treating conditions that affect women, girls and gender diverse people,” the report said.
Ninety per cent of respondents told the inquiry they had experienced pain that lasted more than a year. (Unsplash: Anthony Tran)
More than half of the respondents said their pain affected their recreation and hobbies as well as their intimate relationships, while 44 per cent said it had an impact on their work, studies, or volunteering.
An overwhelming majority of women with disabilities — 89 per cent — said their pain also affected their mental wellbeing, sleep, caused feelings of shame, guilt and helplessness, and thoughts of self-harm for some.
Women living in regional and rural Victoria often had to travel long distances to access health care, while Aboriginal and Torres Strait Islander women experienced systemic discrimination.
“Women want to be heard without bias or judgement, treated with empathy and respect, empowered to make informed decisions about their health, and able to access affordable, effective care easily,” the report authors wrote.Â
“Women, girls and gender diverse people with living and lived experiences of pain deserve to live fulfilling lives and participate fully in the economy and society.”
Thea Baker made a submission to the inquiry after receiving multiple surgeries for endometriosis and adenomyosis, as well as a hip replacement for arthritis over the past 10 years.
She now works as a psychotherapist treating women with complex trauma.
“I’m really hoping that this inquiry and the results and the initiatives that are announced today are the beginning of really widespread systemic change within our medical system … so that women are believed, they are validated, their experiences are understood but primarily that they get efficient access to effective and evidence-based and above all compassionate care,” she said.
“Women make up 51 per cent of the population so I don’t really understand why we’re considered a special population.”
Thea Baker says she hopes the report into women’s page leads to systemic change. (ABC News)
The report has made 27 recommendations in seven key areas, including:
more focus and funding for women’s health researchthe development of a women’s pain action planimproved education and training for health providersa culture change to reduce gender bias and stigmaclearer referral pathways and cross-sector information sharingattracting and retaining clinicians to regional and rural areasadvocating for the federal government to help make health care more affordable and accessible, including an increased investment in women’s pain services.
“Women and girls told the Victorian government how to put an end to their unnecessary suffering and eradicate the barriers they face when seeking help,” the report concluded.
“Your voices are now being heard.
“We hope that, in time, we can improve pain care and the overall health and wellbeing of all Victorian women and girls.”
Delayed report release accompanied by IUD pain relief announcement
The inquiry’s final report has been delayed by more than half a year.
Victorian inquiry into women’s pain quietly delayed
It was due to be made public early this year, then an updated release date was given as “mid-2025”.
It has finally been released on Sunday.
Ms Thomas attributed the delay to the “overwhelming” number of submissions it received.
She said she did not expect “the breadth of the challenge” faced by Victoria.
“This is not just a challenge for the Victorian health system,” she said.Â
“This is a challenge across the nation and, indeed, around the world.”
She said Victoria would develop a new clinical pain standard to help women receive more effective treatment.
“We need to work with our healthcare workforce, with our universities, with the medical colleges to address this issue.
“It’s a big system issue, so it’s going to take some time to change.”
Mary-Anne Thomas says the report was difficult to read. (ABC News)
She also announced the establishment of a specialist clinic at the Royal Children’s Hospital.
The hospital’s head of gynaecology, Sonia Grover, said some girls were missing school every month because of period pain, yet their experiences were being overlooked.
“That changes today,” Professor Grover said.
She said early intervention could have lifelong benefits.
“A beautiful study done out of Oxford [university] recently published showed that teenagers who had horrible period pain have got a 75 per cent chance of having chronic pain of any sort 10 years later,” she said.
“I hope that we can have fewer adult women with chronic pain problems, fewer problems with infertility.”
Joining Ms Thomas in releasing the report was Premier Jacinta Allan, who announced Penthrox — commonly known as the green whistle — would be offered at 20 sexual and reproductive health hubs in Victoria to women receiving IUDs.
Frankston Hospital, in Melbourne’s south, began trialling the use of the pain relief for the procedure in 2023.
“What the green whistle does is give women control over managing their pain but also over their body and their reproductive choices,” Ms Allan said.
Jacinta Allan announces the green whistle will be used for pain relief during IUD procedures at 20 reproductive health clinics. (ABC News)
She also revealed the difficulties she had experienced when she was younger as she tried to find help to diagnose and treat her endometriosis and subsequent fertility issues.
“Whether it’s the heavy periods, the crippling cramps … we’re taught we just have to push through it and put up with it,” she said.
Why can getting an IUD be so painful?
“For too many women and girls, they’re not being listened to, which means in turn they’re not getting the treatment they need and deserve.”
Nisha Khot, an obstetrician and senior leader at the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, welcomed the rollout of the green whistle.
“We all know that an IUD is an excellent contraceptive; it’s also good for heavy periods,” Dr Khot said.
“It seemed like such a shame that women were not able to use an IUD because their experience of getting an IUD inserted or changed was so painful.”
The not-for-profit advocacy group Women’s Health Victoria described the release of the report as a watershed moment.
“This is a really powerful and courageous collection of women’s evidence — we owe them change,” chief executive officer Sally Hasler said.
Ms Hasler called on the Victorian and federal governments to work together to implement the report’s recommendations, especially those that focused on regional communities, First Nations people and those from different cultural backgrounds.
“We ask that Medicare funding be increased to cover longer appointments for people living with complex health needs and that rebates for specialist services don’t leave women unfairly out of pocket.”