More than one in seven women have endometriosis, and systemic shortfalls mean those living with it continue to suffer. But hope is on the horizon
Two kids rush toward the bathroom door looking for their mum, only to find her on the floor. They call out to her but get no response.
A few days later, it's her husband who finds her unconscious.
For Nadeesha De Alwis, waking up bruised, not realising she’d fainted, was a part of her daily life.
"It was really bad," the 36-year-old says.
De Alwis also struggled with nausea, migraines, abdominal pain and bowel problems.
"It was pretty much like a whole systemic issue," she says.
Last year, she was diagnosed with endometriosis, the debilitating chronic inflammatory condition where tissue similar to the lining of the uterus grows outside the uterus.
She’s one of more than 800,000 women or those presumed female at birth in Australia who have endometriosis.
"[The tissues] respond to hormonal changes and can lead to inflammation, scarring, adhesions and chronic pain," gynaecologist Dr Tanushree Rao explains.
De Alwis is grateful she got a confirmed diagnosis, but she says getting it took years. And she’s not the only one who’s experienced this lengthy process.
The long delays
According to 2025 data from the Australian Institute of Health and Welfare, the diagnosis of endometriosis is often delayed, with an average of between six and eight years between the onset of symptoms and diagnosis.
De Alwis spent four and a half years chasing answers before she received her diagnosis.
"I was extremely frustrated," she says.
"That was me actively pursuing and wanting answers. I had gone to multiple gynaecologists, many GPs, and I've been tested for other things as well.
"I'm glad that finally I was able to find answers, but it took way too long."
Like De Alwis, Maddison Teigan battled endometriosis for years. And the 29-year-old’s journey towards diagnosis and treatment was a long, difficult one.
"I spent time looking at the wrong areas for years with no relief and no answers," Teigan says.
"That was both costly and draining for me and my family.
"I’ve had symptoms of endometriosis since I was a teen. At 14 years old, I was misdiagnosed with something called Mittelschmerz, which ended up being endometriosis all along. [I had] extremely heavy periods and bad period pains that would put me on the floor unable to move at times."
Both De Alwis and Teigan experienced what they describe as "medical gaslighting" during their treatment process, and they often felt unheard by their doctors.
Diagnosing and treating endometriosis requires a team of health-care professionals, and Dr Rao is one of only a few medical practitioners in Australia qualified to do both.
She says there are many misconceptions about endometriosis.
"[One] is that endometriosis only causes painful periods. [Instead] some patients have bowel symptoms that resemble irritable bowel syndrome, urinary symptoms that mimic recurrent urinary tract infections [and] lower back pain," she says.
"[And] the severity of symptoms does not always reflect the severity of disease," she says.
"Some women with extensive endometriosis have relatively mild symptoms, while others with minimal disease experience debilitating pain."
Presently, there is no singular standardised certification for health practitioners in both diagnosing and treating endometriosis in Australia.
Consequently, diagnosis methods and professionals in Australia vary in accuracy, availability and experience.
And there’s the added complication that many practitioners have to work together for a confirmed diagnosis and treatment. So the quality of care can be inconsistent across Australia.
This has left many patients like Teigan vulnerable. For example, she questions the surgery she underwent, after she experienced significant post-op complications, such as uncontrollable bleeding and bowel complications, which led to multiple rehospitalisations.
The Department of Health advises referring to a guideline published by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists for endometriosis.
The guideline provides evidence-based suggestions for practitioners to use when diagnosing or treating potential and confirmed cases of endometriosis.
Breakthroughs and hesitations
There are ongoing efforts by governments and researchers globally to improve systems and achieve consistent care.
One initiative is the Ziwig Endotest, developed in France, which tests for biomarkers in saliva to help with diagnosis.
Recently the UK’s National Health Service approved it for use, which prompted global interest.
For now, Australian experts are cautious about the test. Dr Rao says it’s an exciting area of research, but more research and testing is needed.
For Teigan, breakthroughs like this means hope and relief for those with endometriosis.
She took part in the Ziwig test trial in Paris last year. According to her, the results allowed for a confirmed diagnosis through an expert within weeks.
Dr Rao says these types of tests won’t be the solution to all diagnostic issues.
"While these newer molecular tests may eventually become valuable tools, they should complement — not replace — careful clinical assessment and high-quality imaging performed by experienced clinicians.
"It is also important to recognise that a negative scan or negative biomarker test does not completely exclude endometriosis," she says.
The value of earlier diagnosis
The international framework for classifying endometriosis used here in Australia breaks the condition into four stages, with four being the most severe.
By the time De Alwis was diagnosed, she had already reached stage three.
It had disrupted her career, her time with her family and her daily life.
"If they actually put more thought into investigating it a bit earlier, I think I wouldn't have had to go through all that pain," she says.
Dr Rao says early diagnosis could be "life-changing" for some people.
"[It] reduces years of uncertainty and repeated presentations to healthcare providers and may help preserve fertility and reduce progression of symptoms in some patients," she says.
"Earlier diagnosis also reduces the emotional burden of feeling dismissed or misunderstood."
She says it would allow medical practitioners to implement treatment and management "before symptoms become more debilitating."
What's next
Currently researchers are exploring a wide range of approaches to diagnosing, managing and treating endometriosis. For example, the National Health and Medical Research Council recently pledged $700,000 in funding for researching endometriosis.
This follows continued funding allocation by the Department of Health towards endometriosis diagnosis and management. This includes physiotherapy to help with the pain, more clinics, and the development of new diagnostic frameworks.
And QENDO and Endometriosis Australia are two long-standing charities dedicated to supporting women with endometriosis. For over a decade, both have offered support programs, advocated, and fundraised for the condition.
Dr Rao says working together means better outcomes for those who live with endometriosis.
"It is invaluable to be involved throughout the patient's entire journey," she says.
"From the initial consultation, through imaging and medical management, to surgery and long-term follow-up."
De Alwis would just like more attention paid to the condition.
"I think more awareness needs to be brought into this, and more research needs to be done, and the government needs to allocate more funding," she says.
