Media Statement 18 June 2026
New research from Endometriosis New Zealand and the University of Canterbury shows that almost half of endometriosis patients had never heard of the condition when their symptoms first began, contributing to significantly longer delays in diagnosis.
The findings are the first published results from Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand, a major research project aimed at building a clearer picture of how the condition impacts the 120,000 New Zealanders living with endometriosis.
The first survey, The Impact of Awareness on Endometriosis Journeys, found that 47 percent of respondents had never heard of endometriosis when their symptoms first began, while less than 5 percent felt well informed or very knowledgeable about the condition.
Those who had no awareness of endometriosis at symptom onset experienced a median diagnostic delay of 11 years, compared with nine years for those who had any awareness.
Endometriosis New Zealand Chief Executive Tanya Cooke says the findings show that awareness has a direct impact on how quickly people recognise symptoms and seek help.
“Too many people in New Zealand are still spending years in pain without knowing that what they are experiencing may be endometriosis.”
“This research shows that if someone has never heard of endometriosis when their symptoms begin, their wait for diagnosis is, on average, two years longer. That means two more years of uncertainty, missed opportunities for care and painful impacts on their lives.”
The research, based on responses from more than 650 endometriosis patients, also found that only one-in-three respondents felt information about endometriosis had been readily available to them.
“When people do not know what endometriosis is or cannot recognise their symptoms, they are more likely to spend years in pain without answers,” Cooke says.
Melissa Aubroeck, 43, says she experienced symptoms for around 15 years before endometriosis was first raised with her by a new GP.
“I had mentioned to several doctors over the years that I thought my pain could be hormone related, but no one ever mentioned endometriosis to me.”
“In January 2025, I saw a new GP and she immediately said, ‘this sounds like endometriosis’. That was the first time I had ever heard it mentioned,” Aubroeck says.
“Within six months I had an ultrasound and MRI, and they found deep infiltrating endometriosis, adenomyosis and three fibroids. I am grateful that someone finally recognised what might be going on, but it is hard not to think about how different things could have been if endometriosis had been raised earlier.”
The research findings also reinforce the need for a coordinated national response to endometriosis.
“Within six months I had an ultrasound and MRI, and they found deep infiltrating endometriosis, adenomyosis and three fibroids. I am grateful that someone finally recognised what might be going on, but it is hard not to think about how different things could have been if endometriosis had been raised earlier.”
The research findings also reinforce the need for a coordinated national response to endometriosis.
“New Zealand does not currently have a National Endometriosis Action Plan or any nationwide programme specifically aimed at improving awareness, diagnosis, treatment and support for endometriosis,” Cooke says.
“These results show why that needs to change. A National Action Plan can build greater community and clinical awareness backed by better clinical pathways, improved health professional education, adoption of best-practice guidelines and fairer access to diagnosis and treatment.”
Lead researcher Katherine Ellis, PhD candidate at the University of Canterbury, says the findings highlight the importance of early and accurate information.
“Endometriosis is a complex condition with a wide range of symptoms, and many people do not immediately recognise that what they are experiencing could be part of a chronic disease.”
“The increased delay to diagnosis shows awareness is not simply a communications issue, it is a critical stage in the pathway to timely and effective care.”
The research found the most common way respondents first learnt about endometriosis was through family members or friends, followed by medical practitioners.
The wider Endometriosis New Zealand and University of Canterbury research project has had more than 6,500 survey responses completed across the series, with more than 1,650 endometriosis patients signing up to participate in future research.
The Impact of Awareness on Endometriosis Journeys has been published on the Australian and New Zealand Journal of Obstetrics and Gynaecology (ANZJOG) by K. Ellis, J. F. Donoghue, and R. Wood. Further results from the wider research project will be published over the coming months.
FAQs
Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand is a major research project being undertaken by Endometriosis New Zealand and the University of Canterbury.
The project is aimed at building a clearer picture of how endometriosis impacts people in New Zealand, including their experiences of awareness, diagnosis, treatment, work, education, finances and the healthcare system.
Across the wider research series, more than 6,500 survey responses have been completed, with more than 1,650 endometriosis patients signing up to participate in future research.
A National Endometriosis Action Plan would be a coordinated national strategy to improve awareness, diagnosis, treatmeant, research and support for people with endometriosis in New Zealand.
Australia already has a National Action Plan for Endometriosis, launched in 2018. The Australian Government has committed around A$127 million, including A$37 million for 33 Endometriosis and Pelvic Pain Clinics, providing multidisciplinary support for people with endometriosis and chronic pelvic pain.
Endometriosis New Zealand strongly advocates for New Zealand to develop its own National Endometriosis Action Plan.
A National Endometriosis Action Plan would provide a nationally-coordinated, government-backed programme to improve endometriosis awareness, diagnosis, treatment, care and research.
This would include better education for the public, schools and health professionals; clearer diagnostic and referral pathways; improved access to imaging, treatment and multidisciplinary care; targeted action to reduce inequities for Māori, Pasifika and rural communities; and more New Zealand-specific research and data.
The aim would be to reduce diagnostic delays, make care less dependent on postcode or ability to pay, and ensure people with endometriosis receive timely, consistent and effective support.
About Endometriosis New Zealand
Endometriosis New Zealand is the national organisation for endometriosis – providing support, advocacy, research, information, education, and awareness on endometriosis. We are committed to improving the lives of individuals impacted by this condition and helping them find a way forward with hope and strength.
Contact:
Tanya Cooke | Chief Executive | Mobile: 027 255 1306 | Email: tanya@nzendo.org.nz