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Thea Baker has a deep understanding of what women with long-term, undiagnosed pain endure.
Like hundreds of thousands of Australian women – one in seven by the age of 44-49 – she has lived with endometriosis, the condition that can cause so much pain many are sometimes crippled by it.
As a psychotherapist, she treats many patients living with “unending women’s pain” that has often been ignored, dismissed or belittled when they seek care.
“It’s exhausting even having to advocate for yourself all the time, to pitch up time and again to clinician after clinician and get this sense that somehow this is the kind of pain we’re just supposed to tolerate and accept,” Baker says. “That this is just what it’s like.”
The sweeping Victorian Women’s Pain inquiry in 2024 revealed “deep-seated medical misogyny and gender bias in the healthcare system” when it reported late last year, and Baker sees the effects of it among so many women.
Baker describes herself as an “annoying” person who will keep pushing for medical answers if what she is hearing doesn’t sound good enough. “I am white, super educated and don’t care if doctors don’t like me,” she says.
Baker was one of more than 13,000 women and groups who contacted the inquiry, which eventually found 90 per cent of respondents lived with pain for more than a year, 54 per cent experienced it every day and 53 per cent had a delayed diagnosis.
It found sexism and bias contributed to 71 per cent of respondents feeling dismissed by health officials.
Former health minister Mary-Anne Thomas oversaw the inquiry and immediately introduced the “green whistle” anaesthetic free for women having IUDs inserted at the state’s 20 women’s reproductive health hubs.
Also among the 27 recommendations released late last year was that standards be created to establish what patients should be able to expect.
Among these standards, which will be released on Sunday, are that “women must be taken seriously and believed when discussing their pain”, be listened to and supported to ask questions and express concerns, and be respected as partners in decision-making about their body, treatment and care.
Health Minister Ingrid Stitt said “very distressing recent examples of where women have been subjected to appalling care and treatment” made such standards important. She was referring to the alleged experiences of large numbers of patients of disgraced gynaecologist and endometriosis doctor Simon Gordon.
Healthcare watchdog the Australian Health Practitioner Regulation Agency launched an ongoing investigation into Gordon after The Age revealed allegations in February that he performed unwarranted endometriosis surgeries on women, including full hysterectomies. He denies this, but civil proceedings have been launched against Gordon in Victoria’s Supreme Court.
Legal firm Arnold Thomas & Becker said in August that it had been contacted by more than 500 women treated by Gordon and was representing 295 of his former patients.
Women’s Health Victoria has been running the endometriosis and pelvic surgery concerns line since March, and chief executive Sally Hasler said more than 400 women, “most of them patients of Simon Gordon”, have called the phone line to discuss the profound effects on their quality of life.
Hasler said the pain standards were a good start, but there was no accountability mechanism yet built into them, and no training or monitoring.
“It’s an important step forward and consumer resource, and it acknowledges that women’s pain is too often minimised or ignored and sends a strong message that women’s pain is real, and it deserves to be taken seriously and should be treated with respect,” she said.
“But it’s really important that the responsibility for pain can’t rest solely with women continuing to advocate for themselves.”
That 90 per cent of women told the inquiry that they had sought help for their pain but hadn’t been listened to made introducing professional, as well as consumer, standards vital.
Professor Kate Seear, deputy chair of the inquiry, has also lived long-term with endometriosis and adenomyosis and says the fact that so many women made submissions in a short period shows the extent and impact of chronic and long-lasting women’s pain.
“I have lived experience [of it] my whole life, I did my PhD on endometriosis and wrote a book about it … but still, hearing about particularly the impact on women’s mental health and relationships of chronic, unaddressed, ignored and trivialised pain was surprising,” Sear said.
“All of us involved in the inquiry felt a great sense of responsibility … To elevate and make women’s experiences more visible has been really rewarding.”
Jean Hailes for Women’s Health chief executive Sarah White agreed the new consumer standard was good, but more details on how it would be implemented and monitored were needed “to ensure it becomes part of the fabric of care for all women, all the time”.
Stitt said the consumer standard sends strong messages to state and federal health regulators that women’s health concerns cannot be ignored or dismissed, and that the over-arching women’s pain action plan recommended by the inquiry was close to being released.
“We are going to have to do a lot more, and to protect what we’ve been able to achieve so far against some of the other parties who have made their policies clear when it comes to healthcare,” Stitt said. “We know One Nation want to wind back abortion rights.”
Shadow minister for health Georgie Crozier said she had no plans to change any aspects of the recommendations should the Liberals win the November election.
- The Women’s Health Victoria Endometriosis and Pelvic Concerns help line is on 9664 9330
Wendy Tuohy is a senior writer focusing on social issues and those impacting women and girls.Connect via X or email.From our partners
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