Lead endometriosis researcher and Canterbury University PhD candidate Katherine Ellis. Photo: Supplied
Researchers hope to get a clearer idea of how endometriosis affects New Zealand sufferers, with the launch of a major new project.
Until next March, Endometriosis New Zealand and the University of Canterbury will run monthly surveys for women over the age of 18, who have suspected or confirmed endometriosis.
Endometriosis is an often painful and debilitating condition in which tissue similar to the inner lining of the uterus grows outside the uterus.
Endometriosis New Zealand chief executive Tanya Cooke said it was a "landmark study" for sufferers.
"For too long, their experiences have been under-recognised in health and policy settings," she said. "This research will provide the information we need to push for meaningful change and inform the development of a future National Endometriosis Action Plan."
Lead researcher and PhD candidate Katherine Ellis said about 120,000 women were affected here, but little is known about it.
She hoped the study would have a significant impact on policy-making and medical practices for sufferers in Aotearoa.
"We know endometriosis has wide-ranging impacts on people's lives, from chronic pain and fertility issues to lost income and disrupted education.
"Currently, we have to rely mainly on international data to try to understand these issues. This research will provide us with New Zealand-specific data to inform health system responses, influence government policy and help target support.
"This project is about turning the lived experiences of those with endometriosis into insights that can contribute towards better policymaking in future."
The 10 monthly surveys each take about 10 minutes to complete.
Participants can sign up via the Endometriosis New Zealand website, she added.
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