Australia is placed to lead the charge against endometriosis, with a world-first research centre set to revolutionise our understanding of the disease and treatment possibilities.

Arguably one of the most widespread, yet under-researched, diseases impacting women worldwide, endometriosis has left millions to suffer in silence, without adequate care or answers. 

But now, the largest known philanthropic contribution to endometriosis research in the world is set to change things, right here in Australia. 

Funded by $50 million over the next decade, the Ainsworth Endometriosis Research Institute, in partnership with UNSW Sydney, will attempt to bridge the gap between scientific research and clinical practice, no doubt helping millions of women understand and manage their endometriosis in due course.

Like many conditions only affecting women, endometriosis is largely misunderstood by the wider population, with a lack of funding and research over the past few decades impeding the scientific community’s ability to assist and educate those impacted. 

Following diagnosis, which for most women requires years of suffering and countless medical opinions, women are often left with few treatment options. 

Now, with 200 million people suffering from endometriosis globally, those involved in the new research institute hope to use the record-breaking financial backing to build their understanding of the disease’s biology and pathogenesis, inevitably improving detection, management and treatment for generations to come.

Currently, endometriosis research in Australia – and around the world – is lagging significantly, despite the number of diagnoses and people impacted by the disease directly growing. 

Defined as a condition where tissue similar to the lining of the uterus is found outside the uterus, people suffering from endometriosis often experience severe pelvic pain, fatigue and potential infertility. 

On average, people will endure six to eight years of symptoms and chronic pain before receiving a diagnosis. With the symptoms and debilitating pain impacting almost every aspect of people’s lives – from their careers and physical ability to their fertility and personal relationships – the lack of contemporary research into the condition is absurd. 

Currently, it is estimated that roughly 830,000 Australians live with endometriosis, with one in seven likely to experience it by age 49.

The Ainsworth Endometriosis Research Institute is poised to adopt a global consortia-based approach to research, positioning Australia as a world leader in the fight against endometriosis and women’s health in general. 

With Professor Jason Abbott, a renowned clinician and researcher at UNSW, set to assume the role of Clinical Director, the institute will bring together globally-renowned scientists, philanthropists and clinicians to accelerate breakthroughs in diagnosis and develop precision-based treatments. 

Moving beyond current medical limitations, the institute’s groundbreaking projects will explore genomic research, biorepositories, and advanced testing. 

“Having cared for those with endometriosis for three decades, it is clear to me that we must go beyond the surgery and current medical treatments to understand the disease processes,” says Professor Abbott.

“AERI is the most significant commitment to endometriosis research that I have ever seen. The donation from the Ainsworth family provides surety to endometriosis researchers, will drive program-driven scientific discoveries and pave the way for generational change for anyone who has, or knows someone with endometriosis.”  

“The Ainsworth Endometriosis Research Institute represents a historic moment in women’s health. This unprecedented collaboration will not only form the future of endometriosis research but also accelerate our ability to provide real, tangible solutions that quite literally change the lives of each of the hundreds of millions of people globally impacted by this condition,” echoes UNSW Vice-Chancellor and President Professor Attila Brungs.

As the institute’s name suggests, the Ainsworth family is behind the generous philanthropic donation – the largest amount ever received by UNSW, and the largest amount ever donated to endometriosis research globally. 

With three branches of the family deeply impacted by endometriosis, the Ainsworth family are determined to alleviate the chronic pain and uncertainty that comes with every endometriosis diagnosis. 

“I’ve had endo pain since I was 15 years old. While my fertility hasn’t been impacted, I experience chronic, daily pain and severe flare-ups that debilitate me for days or weeks on end,” Lily Ainsworth, who, along with her mother, has lived with endometriosis since she was a teenager, says in a statement.

“Like many others, endometriosis has affected my education, my career, my relationships, my family, and dictates how I go about each and every day. This reality is shared with millions of people living with endo around Australia and the world. We believe this can change. The Ainsworth Endometriosis Research Institute is more than an exceptional research institute; it is hope. Hope for those living with endometriosis now and in the future, that they will be able to live full, happy and healthy lives.” 

With endometriosis estimated to burden Australia’s economy by $7.4 billion to $9.7 billion annually, the Ainsworth family’s donation is comparatively a modest investment in future research and innovation.