2025-2026 Research Project

Endometriosis New Zealand, in partnership with the University of Canterbury, is launching a major research study on the barriers and facilitators of endometriosis management in Aotearoa New Zealand.

This significant project will capture the lived experiences of people with endometriosis through a national survey series. The research aims to gain a broader understanding of the impacts of diagnosis, treatments, care, awareness and interactions with medical practitioners on endometriosis patients, as well as the impacts of endometriosis on work lives, education, relationships and finances.

Your voice matters

If you are over 18, reside in New Zealand and have either suspected or confirmed endometriosis, you are welcome to participate in just one, a few, or all ten surveys. We would love you to do all ten!

Whether you have endometriosis diagnosed through radiology or surgery or suspected by your medical practitioner, your insights can help transform awareness and understanding of endometriosis in New Zealand, and hopefully even change government policy.

How it works

The research begins with a short introductory survey focused on demographic information, including age, location, background and key health indicators (don’t worry, all information remains anonymous or confidential). If you sign up to participate and share your demographic data with us, we will then email you a unique link to the rest of the surveys so that your answers each month can be linked together.

Why this research matters

An estimated minimum of 120,000 New Zealanders live with endometriosis, but the true scope of its impacts is still not fully understood. Too often, the experiences of those with endometriosis are invisible in policy, under-recognised in the health system, and unsupported in daily life. This project aims to help change that.

By gathering real data from real people:

  • The findings will directly support ENZ’s advocacy for a National Endometriosis Action Plan and help raise awareness of the challenges and current barriers facing those living with endometriosis.
  • We can quantify how endometriosis affects people’s lives, from work and education to relationships and wellbeing.
  • We can create a robust evidence base to inform everything from future resources for patients to government decision-making.

Frequently Asked Questions

Who can take part in the research?

Anyone in New Zealand over the age of 18 with suspected or confirmed endometriosis.

How long will the monthly surveys take?

Each survey is short and should take no more than 5-10 minutes to complete.

Do I have to complete every monthly survey?

No. You can complete as many or as few as you like, but the more you participate, the more valuable your contribution will be.

Is my personal information safe?

Yes. All survey data is strictly managed under the University of Canterbury’s ethical research guidelines. Identifying information will never be shared.

Can I join later?

Yes, you can sign up via the initial survey link at any time while the project is open.

Will I get to see the results?

Yes. We will publish findings from the research on our website and share them with participants.

More information will be provided to you by email once you have completed the initial demographic survey.

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