Finally, hope for women living with chronic pain. After decades of medical gaslighting, a new drug gets approval – as doctors welcome long-overdue funding
Australia’s taxpayer-funded health system, Medicare, is lauded as one of the most robust in the world.
Yet ask any woman living with chronic pain how they would rate their standard of care and you would think they were living in a third-world country.
One in nine Australian women live with chronic pain caused by endometriosis, a disease in which tissue similar to the lining of the uterus grows outside it. There is no cure and the average time it takes to get a diagnosis is seven years.
Endometriosis made headlines around the world in early 2023 when Bindi Irwin, the daughter of legendary ‘Crocodile Hunter’ Steve Irwin, opened up about her decade-long struggle with the condition, and revealed she had been forced to go to America to have surgery to remove painful cysts.
She said ‘every part of my life was getting torn apart because of the pain’, yet doctors had previously told her ‘it’s all in your head’, ‘you’re hormonal’, or to ‘just have a cup of tea and lie down’, leaving her feeling ‘desperately alone’.
For the estimated 830,000 women living with endometriosis in Australia, this type of medical gaslighting from GPs is all too familiar.
Dr Rebecca South, a specialist in women’s health, used to be alarmed when patients living in agony would come to her Sydney practice and reveal their last doctor had told them to ‘go home and take some Nurofen because there’s nothing wrong’.
Now she’s not surprised at all.
Bindi Irwin, seen with daughter Grace, lived for years with the brutal pain of endometriosis. Her symptoms were initially dismissed by doctors and she ended up having surgery overseas
The daughter of the late conservationist Steve Irwin is seen recovering in a New York hospital
More than half of the women who join the months-long waitlist for an appointment at the Inner West Women’s Health Clinic in Leichhardt, where Dr South works, have previously had their pain dismissed by a medical professional.
‘Often, people have talked about their pain to health practitioners quite a few times over many years,’ Dr South told Daily Mail Australia.
‘Sometimes, they’ve even been to emergency rooms many times. And usually their symptoms have been minimised down to being “period pain” or “ovulation pain” – particularly if they have an ultrasound which is deemed “normal” – and it very often is – then they’re told that there’s nothing wrong,’ she said.
There was uproar in August when Canberra Health Services posted a video titled ‘Stop! Is it an emergency?’ that discouraged people living with severe pain from seeking hospital admission because this is not a ‘life-and-limb threatening situation’.
The clip specifically cited two chronic pain conditions, endometriosis and arthritis, as non-emergencies.
One young woman, Jade, later said the video deterred her from going to the emergency department when she was experiencing ’10 out of 10′ pain during an endometriosis flare-up.
This was despite the pain being so severe that she was vomiting and collapsed on the floor. Jade said she ‘did not see the point in going in’ if her condition was not viewed as an emergency.
Children’s entertainer Emma Watkins, 34, formerly of The Wiggles, has suffered from endometriosis since she was a teenager, but did not seek treatment for eight years
Her GP had told her the heavy bleeding and pain was caused by ‘working too much’
Children’s entertainer Emma Watkins, formerly of The Wiggles, did not get help for her ‘exponential symptoms’ of endometriosis until 2017 when she found herself doubled over in pain right before a concert in Adelaide.
Her GP had told her the heavy bleeding and pain was caused by ‘working too much’.
At the time, she was travelling the world and performing four shows a day, six days a week as the Yellow Wiggle, being responsible for about 50 per cent of their revenue.
Until that day in Adelaide, she had never spoken about her pain or cancelled a show. But this time she ‘could not get off the floor’.
She has since left the band to form her own independent project, Emma Memma.
Dr South says stories like these are commonplace for Australian women seeking treatment for any kind of pelvic pain or menstrual-related issue.
‘That is completely what you would be told in an emergency department – “it’s period pain. Here’s some Nurofen, go home”.’
Dr South is among a handful of doctors working at one of 22 specialised clinics that will be funded by the Federal Government’s new endometriosis and pelvic pain package from July 1, 2025.
It comes after a new drug called Ryeqo was in February approved for use in Australia aimed at relieving endometriosis pain. It’s the first medication addressing the condition that the Therapeutic Goods Administration (TGA) has approved in 13 years.
The once-daily tablet costs $135 for a month’s supply and isn’t subsidised by the Pharmaceutical Benefits Scheme.
When the $49.1 million endometriosis project was announced in May, Federal Health Minister Mark Butler said: ‘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.’
Dr South — who has been a GP for more than 20 years, in addition to working as a procedural obstetrician in the NT, and as a senior lecturer on sexual health at Family Planning — could not agree more.
She says the training afforded to her by the new funding – the first the sector has ever received – has already ‘completely changed the way we do consultations’.
However, her clinic, and the 21 others offering longer specialist consultations of 45 minutes or more under Medicare, is already struggling to meet the demand.
The current waitlist for an initial consultation at her clinic is more than three months.
‘We run a very small clinic in a very large city,’ she said.
‘We do have some protected pelvic pain appointments, but also cover a raft of other services. We will never meet the demand for where we live in Sydney. There’s no way.’
But, in her opinion, there is an obvious solution.
Dr South is calling on her GP peers across Australia to step up to the plate and retrain in women’s health so they can properly serve their communities.
‘You don’t have to be a specialised clinic to treat menstrual and pelvic pain. Nothing we are doing at Inner West Women’s Health is a specialised service,’ she said.
‘The only thing that’s specialised is our knowledge and training.
‘Nothing that we offer is beyond the scope of an interested doctor who is prepared to make a longer consultation time and implement the information that we can teach.’
One in nine Australian women live with chronic pain caused by endometriosis, a disease in which tissue similar to the lining of the uterus grows outside it. There is no cure and the average time it takes to get a diagnosis is seven years
Initial gynecologists’ appointments currently receive less than half the Medicare rebate of other specialist appointments dealing with issues that are as complex as endometriosis.
The reality for women suffering with the condition is they are rushed through quick appointments and then given two options: Either undergo surgery to diagnose and remove the disease, with 50-50 odds of it growing back immediately, or roll the side-effects dice with hormonal treatments, including contraceptives like the pill or IUDs such as Mirena and Kyleena.
‘There’s a lot of distrust around hormone use, which I think does take time to talk people through, to understand why we’re using them in this context to stop bleeding,’ Dr South said.
‘The aim is to stop bleeding because bleeding is inflammatory and if we can reduce the bleeding in the pelvis, then normally that improves symptoms.’
That is why her clinic has decided to concentrate on sharing its knowledge and operational model with other doctors, including training them on how to use resources like pelvic pain questionnaires and pain impact forms.
Dr Rebecca South, who has been a GP for more than 20 years in addition to working as a procedural obstetrician in the NT and senior lecturer on sexual health at Family Planning, is on the frontlines of the endometriosis crisis working at Inner West Women’s Health in Sydney
Dr South believes clearer national guidelines will help cut down the diagnosis and/or treatment time for endo ‘because it’s always been very open to interpretation’.
‘Nobody knows how much anyone else bleeds and what levels of pain anybody else experiences. So often, whether or not you get help is very dependent on what other people – particularly health professionals or family – do to interpret your pain and your level of distress,’ she said.
‘Mothers of people with heavy periods and pelvic pain may have also experienced that themselves, so it’s kind of normalised when they tell their daughters, “That’s just what a period is”.’
The next hurdle after diagnosis is how a health professional responds.
‘If the doctor’s first question is, “Can you manage with a couple of ibuprofen?” it’s conversation closed,’ Dr South said.
‘The hope is more women will be told: “What you’re experiencing is not normal, let’s talk about it.” But takes a level of confidence and understanding of what is “normal” menstrual pain.’
The Inner West Women’s Health clinic is actively trying to ‘package up’ all they’ve learned over the past 18 months ‘so that it’s easier for other doctors to catch up to where we’re at.’
Until quite recently, women had to be formally diagnosed with endometriosis by undergoing a surgical procedure known as a laparoscopy before receiving any treatment.
It’s a prohibitively expensive step that means the number of women living with endometriosis is likely far greater than our current estimates.
‘It’s an invasive surgery, and it’s not cheap,’ Dr South said.
‘So for a young woman, or anyone really, the cost of that and fear of the unknown is a huge turn-off. People think “well, things aren’t so bad, I’ll keep putting up with it”.’
In the past, GPs often thought they were doing the right thing by not wanting to label someone as having the disease until they could be certain.
But now, doctors like her are fighting back against that idea because too many women – just like Bindi Irwin – are waiting too long for help.
‘If someone is experiencing pelvic pain or menstrual pain then you don’t have to wait for a laparoscopic surgery to be treated,’ Dr South said, adding that more often than not, chronic pain requires holistic and individualised care.
‘The first step is knowing that your pain is valid, it is real, and it needs to be treated.
‘I’ve actually had people burst into tears when I’ve shown them a cluster of all the symptoms that go together,’ she said, listing off pelvic pain, menstrual pain, IBS, headaches, feeling tired and depressed, and an irritable bladder.
‘Because they’ve always kind of known and in their head they felt like it was all connected.
‘A lot of what happens is I see people who say, “I’m worried there is something wrong with me that people are missing. Because I experience this really severe pain and yet I’ve been to hospital, I’ve had an ultrasound, and sometimes I’ve had a laparoscopy and still sometimes nothing much has really shown up”.
‘So they believe something is wrong with them that no one can diagnose. Which is really, really scary. And often these are quite vulnerable people who have been living with pain for a long time.’
Dr Fiona Cousins is a postdoctoral research scientist with Victoria’s Hudson Institute’s Endometriosis Stem Cells Group who is working on finding new treatments for endo
The first-line treatment for endometriosis has been the same since 1957: hormonal contraceptives.
‘A lot of patients go on the pill because it essentially puts their lesions into a dormant state and so, while you’re on the pill, they hopefully don’t grow anymore,’ Dr Fiona Cousins, a postdoctoral research scientist with Victoria’s Hudson Institute’s Endometriosis Stem Cells Group, told Daily Mail Australia.
Once you stop taking the pill, however, all the symptoms, including the pain and excessive bleeding, return almost immediately.
The gold standard of endometriosis treatment is still laparoscopic surgery, a keyhole procedure to diagnose and physically remove the disease’s lesions, scarring and cysts.
‘Unfortunately, recurrence after surgery is very high, up to 60 per cent,’ Dr Cousins said. That means within five years of surgery, half of patients will have to go in for another.
In the meantime, it is vital women understand their options for pain management.
‘For many years, there has been a bit of a disconnect between women and their medical providers around pain,’ Dr Cousins said.
The lack of understanding stems from a lack of research, which is because scientists believed for years that women’s menstrual cycles interrupted scientific trials. As a result, trials for almost all medical treatments were focused on the male experience.
‘A lot of the medical treatments that we have, for anything even down to heart attacks, are all tested on men,’ added Dr Cousins.
She is trying to bridge some of that research gap at the Hudson Institute, where she is working on ‘a novel type 1 interferon called Interferon Epsilon’ – a potential treatment for ovarian cancer that she hopes could be used for endometriosis as well.
Dr Cousins’ theory is the treatment might be able to reprogram a patient’s immune system to detect lesions and attack them, but also to ‘directly act on the lesions themselves and stop them growing.’
‘There’s also big push for endo to be recognised as an inflammatory disorder, not just a menstruating disorder, and we do now think your immune system is a big reason that some people get endo and some don’t.’
