'I've had my uterus, ovaries and bowel removed, but there's still no cure for endometriosis'

What will it take to get this women's health condition the funding and attention it deserves?

Endometriosis is a crisis – yet research, treatment and funding lag. Here, Scarlet Period and Rae founder, Jo Barry, shares her personal experience with the insidious disease, and why it's time for real action, real solutions, and real change. 

Endometriosis is a silent crisis, and I know this all too well. I’ve had my uterus, ovaries, and part of my bowel removed, but there’s still no cure, no clear path forward.

I’ve spent years navigating a medical system that doesn’t have enough answers, let alone a real solution. I’ve been left with a broken body and an unbroken determination to make sure others don’t have to endure what I’ve gone through.

The question is: when will we, as a society, start treating endometriosis with the seriousness it deserves?

The misguided treatment approach: ablation vs excision 

When I was first diagnosed, I was told ablation was the answer. Dubbed quick, easy and (theoretically) effective, it involves destroying or removing the abnormal cells using either heat, cold, lasers or chemicals. 

For years, it was the standard treatment. But now, we know better. Ablation fails to address the root of the disease, and endometriosis often returns, often even more aggressively. Shockingly, it remains the go-to option for many.

Meanwhile, excision surgery, which is proven to be the gold standard because it entirely removes the affected tissue, is underutilised. The reason? Not enough surgeons are trained to perform it, especially in rural areas. As a result, many patients are forced to live with recurring pain, just hoping for something better.

The critical diagnosis delay: why so many women are left in the dark 

Endometriosis is a thief, stealing years of life from many of us. For me, it was a journey that took nearly a decade to diagnose.

I was told for years that my pain was normal, that it was just “part of being a woman.” I was dismissed, misunderstood, and ignored. This delay in diagnosis is a widespread issue, and it’s not just about poor medical care - it’s about a systemic failure in our healthcare system.

Endometriosis is often misdiagnosed, overlooked, or trivialised, with many doctors failing to recognize the severity of the disease or dismissing it altogether. Until we see real change in how healthcare professionals are trained to spot and treat endometriosis, we’ll continue to see people suffer without the support or treatment they need.

Endometriosis is not just a health issue; it reflects a broken system. Image: Pexels

A broken healthcare system 

Endometriosis is not just a health issue; it reflects a broken system. Affecting one in seven women in Australia, it’s a disease that remains under-researched, with inadequate training for healthcare professionals and limited treatment options. The healthcare system needs a fundamental shift in how it treats women’s health - particularly conditions like endometriosis, which are often dismissed as “women’s issues” or “just period pain.”

It’s time to stop sidelining endometriosis and start funding solutions that address it from every angle - diagnosis, treatment, research, and policy. This means creating comprehensive care pathways, integrating endometriosis into the broader approach to health, and funding the research that will lead to real, sustainable solutions.

Women’s health has long been relegated to the backburner, and endometriosis, in particular, remains overlooked. Image: Adobe Stock

A lack of research and investment 

It’s baffling that there’s still so little funding for endometriosis research. Women’s health has long been relegated to the backburner, and endometriosis, in particular, remains overlooked. We’ve lived in the shadows of other health concerns for far too long, with little attention from policymakers or healthcare leaders. We’re still fighting for essential funding - money for research, better care, and the specialists we desperately need.

Instead, we get empty promises tied to political cycles. We don’t need more words from politicians who have no idea what it’s like to live with this disease; we need real action now. It’s time for the kind of investment and research that can lead to real treatment options and, hopefully, a cure.

Endometriosis will not be cured until it's given proper attention by policymakers. Image: iStock

South Australia is leading the way 

Amidst all this, there’s a beacon of hope: South Australia. The Parliamentary Select Committee on Endometriosis has released a landmark report with 20 practical, patient-focused recommendations to improve diagnosis, treatment, and support. It’s not just about words - it’s about action. 

From enhancing education and improving healthcare training to launching public awareness campaigns and ensuring workplace support, these changes directly address the needs of those living with endometriosis. What South Australia is doing shows the way forward, and it’s time for the rest of the country to follow suit.

We need access to better treatment that actually works - something that removes the disease and stops it from spreading. Image: Pexels

Promises versus action

Politicians love to promise more funding for women’s health, but here’s the problem: it’s always tied to the next election cycle. Sure, there may be more affordable medications and new pelvic pain clinics, but these solutions only address the symptoms, not the root causes of endometriosis. We need access to better treatment that actually works - something that removes the disease and stops it from spreading. Until we see action beyond political cycles, we’ll continue to be left behind.

Endometriosis needs more than just a few words of encouragement from politicians. We need a comprehensive plan - one that includes research, training, real treatment options, and a holistic approach to women’s health. For too long, we’ve treated it like just another “women’s issue,” but it’s time to recognise it for what it truly is: a public health crisis. We need a plan that doesn’t just talk about progress but delivers it.

Endometriosis has stolen too much time, too much health, and too much hope. While I’ve fought my own battle, this is a larger fight - one we all need to fight together. No more waiting. No more empty promises. No more inadequate treatments. This is a fight we can’t afford to lose.

Originally published as 'I've had my uterus, ovaries and bowel removed, but there's still no cure for endometriosis'