Endometriosis in Australia: The Silent Health Crisis
The tone of this blog is a little more serious than usual—because it has to be.
March is Endometriosis Awareness Month, and for 1 in 9 Australian women (and those assigned female at birth), this isn’t just a once-a-year conversation. It’s a daily reality of pain, exhaustion, medical gaslighting, and years of fighting just to be taken seriously.
I’m writing this because, despite how common endometriosis is, it’s still wildly misunderstood. In Australia alone, over 830,000 people are affected, though some studies now estimate it could be closer to 1 in 7. And yet, it still takes an average of 6–7 years to get diagnosed. That’s years of doctors telling women their pain is "just bad periods" or misdiagnosing it as IBS, anxiety or—worse—nothing at all.
What is Endometriosis?
Endometriosis happens when tissue similar to the lining of the uterus grows outside of it—often on the ovaries, fallopian tubes, bowel, or bladder. But unlike a period, this tissue has nowhere to go, causing inflammation, internal scarring, and excruciating pain.
And we’re not just talking about bad cramps—endometriosis can cause:
Debilitating pelvic pain (not just during your period, but all the time)
Pain during or after sex (cue the awkward explanations)
Bloating (endo belly is real—one minute you’re fine, the next you look six months pregnant)
Chronic fatigue, nausea and back pain
Infertility or difficulties conceiving
Despite how brutal these symptoms are, endometriosis is still underdiagnosed and dismissed by doctors. And even when you do get diagnosed, getting the right treatment can be just as much of a battle.
Why Does It Take So Long to Get Diagnosed?
In Australia, it takes an average of 6-7 years to get diagnosed, but for some, it’s over a decade. Why?
Medical gaslighting – “Periods are meant to hurt,” “Try the pill,” or the classic, “Maybe if you relaxed…”
Lack of awareness – Many GPs aren’t trained to recognise endo beyond painful periods.
Surgery is often needed to diagnose it – The gold standard for diagnosis is a laparoscopy (keyhole surgery), which in the public health system can have wait times of 12+ months.
It’s mistaken for other conditions – IBS, UTIs, PCOS, even anxiety.
In the meantime, women are left suffering—missing work, struggling with relationships and feeling like their bodies are betraying them.
The Cost of Living with Endometriosis
If the pain isn’t bad enough, the financial burden of endometriosis is another slap in the face.
Many women are forced to go private for diagnosis and treatment, with out-of-pocket costs of $3,000–$10,000 per surgery.
Until recently, even basic medication wasn’t subsidised – Visanne (dienogest), a hormonal therapy for endo, used to cost $750 per year until it was finally added to the Pharmaceutical Benefits Scheme (PBS) in late 2024.
Missed work and loss of income – Endometriosis is one of the leading causes of sick days for Australian women, and it’s recognised as a disability in some countries (but not here).
Meanwhile, women are still told to just have a baby to fix it. (Spoiler: that doesn’t work.)
The Good News: Change is Happening
For years, endometriosis was ignored, but thanks to advocacy, we’re finally seeing some progress:
In 2018, Australia launched the National Action Plan for Endometriosis, committing to better research, treatment and awareness.
$100M+ in federal funding has been allocated to endometriosis research, specialist clinics, and awareness programs.
Endometriosis and Pelvic Pain Clinics have opened nationwide—over 22 specialist clinics are now running across Australia, with more to come.
Schools are being educated – Programs like PPEP Talk® teach high school students the difference between normal period pain and conditions like endometriosis.
Support and Resources
If you or someone you love has endometriosis, you don’t have to fight alone. Here are some incredible Australian support networks:
Endometriosis Australia – Advocacy, education, and support groups.
QENDO – Queensland-based but supports all Australians with peer support and education.
Pelvic Pain Foundation of Australia – Great for pain management resources and school education.
Australian Coalition for Endometriosis (ACE) – Lobbying for change at the government level.
Why We Need to Keep Talking
Endometriosis is not “just” a bad period. It’s a chronic disease that affects every aspect of life, and it’s time it was treated like one.
While things are improving, we’re still battling outdated attitudes, long wait times, and a healthcare system that wasn’t built for women’s pain. But the more we talk about endo—the more we push for research, funding, and awareness—the closer we get to real change.
If this sounds like your story, know that you’re not alone. There’s an entire community fighting for you. And if you’ve ever been dismissed by a doctor or told to “just take Panadol” for pain that’s ruining your life—this month, and every month, we are fighting for you.
Cover Painting: Kyle Mont Art
References:
Australian Department of Health – Endometriosis and Pelvic Pain Clinics (Why it is important)Endometriosis Australia – AIHW Endometriosis in Australia 2023 Report (summary)National Action Plan for Endometriosis 2018 – Background & delayshttps://www.health.gov.au/resources/publications/national-action-plan-for-endometriosis
The Conversation – “Why does it take so long to diagnose endo?” (Caroline Gargett et al.)Australian Government Media Release – Minister’s Statement on Visanne PBS Listing (2024)Pelvic Pain Foundation of Australia (PPFA) – PPEP Talk Program for SchoolsQENDO (Queensland Endometriosis Association) – Support & Advocacy ResourcesAustralian Coalition for Endometriosis (ACE) – Lobbying for National ChangeAustralian Institute of Health and Welfare (AIHW) – Endometriosis in Australia Reporthttps://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia