Not just bad periods
Lack of awareness around endometriosis is adding many years to the wait for a diagnosis for women in Aotearoa, finds a new study.
“Too many people in New Zealand are still spending years in pain without knowing that what they are experiencing may be endometriosis,” says Endometriosis New Zealand chief executive Tanya Cooke.
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.
“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,” Tanya says. “When people do not know what endometriosis is, or cannot recognise their symptoms, they are more likely to spend years in pain without answers.”
Based on responses from more than 650 endometriosis patients, the research also found that only one-in-three respondents felt information about endometriosis had been readily available to them.
One such person is Melissa Aubroeck, 43, who 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,” Melissa 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 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. Entitled ‘Not Just Bad Periods’, read the study at obgyn.onlinelibrary.wiley.com.
