Question 1: Why are you calling for an urgent review of the national endometriosis guidelines?

Answer: Because the system is still failing people with endometriosis (mate kirikopu). Despite how common and disabling it can be, too many people are still being dismissed, misdiagnosed, or left to manage the condition on their own. The 2020 national guidance was a step forward, but it is not formal clinical guidance. It’s non-binding, lacks clear referral pathways, and doesn’t reflect the full reality of what people go through. There are no national protections to ensure timely diagnosis, access to excision surgery, or support in schools, workplaces, and whānau settings. We’re calling for a full review and rewrite of the guidelines — led by Endo Warriors Aotearoa and our Youth Advisory Board in partnership with medical experts, lived experience advocates, and community voices. Our goal is to replace the current guidance with formalised, enforceable national clinical guidelines that are inclusive, evidence-based, and fit for purpose.

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Question 2: Who wrote the guideline review?

Answer: The review was written by Endo Warriors Aotearoa and our Youth Advisory Board. It’s based on the lived experiences of people with endometriosis and informed by international best practice. Many of the insights come from the countless conversations we’ve had with people across Aotearoa seeking help, navigating delays, and feeling dismissed by the system. Members of our board, including a clinical scientist, have reviewed and endorsed this document. This is a community-led project and not a formal medical guideline. Therefore, we are open to feedback from organisations, clinicians, and the wider community over the next four weeks as we work towards finalising it before we submit our petition.

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Question 3: What happens once the petition closes?
Answer: Once the petition closes, we’ll deliver it to Parliament alongside a letter of support from MP Benjamin Doyle and a copy of our community-led Guidelines Review. This submission will formally call on the Ministry of Health to update and adopt new, enforceable national endometriosis guidelines that reflect lived experience and clinical best practice. We’ll keep everyone updated on our progress including meetings with decision-makers, public actions, and next steps. Everyone who signs becomes part of a growing movement demanding better, fairer care for all people living with endometriosis.

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Question 4: What does it mean to review and update the national guidelines?

Answer: National guidelines shape how healthcare professionals treat and support people with endometriosis from diagnosis to pain management to referrals. The current guidelines from 2020 are outdated, narrow in scope, and don’t reflect the full reality of living with endo in Aotearoa today.

Reviewing and updating these guidelines would involve rewriting them with lived experience at the centre, ensuring they include:

• Timely diagnosis and better GP training

• Access to a wider range of treatments (including non-hormonal)

• Support for education, work, mental health, and chronic pain

• Inclusive language and care pathways for all genders and communities

This is about transforming endo care from something people have to fight for, into something they can count on.

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Question 5: Why does your review use inclusive language like “people with endometriosis” instead of “women”?

Answer: Endometriosis does not just affect women. It impacts people of many genders including transgender men, non-binary people, intersex people, and others who may not identify as women but still have a uterus and experience endometriosis. Using inclusive language isn’t about erasing women it’s about making sure everyone affected by this condition is seen, respected, and supported. Too often, gender-diverse people face even greater barriers to diagnosis and care because medical systems assume only women can have periods or pelvic pain.

By saying “people with endometriosis,” we reflect medical reality and human dignity. Everyone deserves care that acknowledges who they are and that starts with language. Endo Warriors Aotearoa has always advocated for all genders and continues to push other endometriosis organisations to be more inclusive in their language, services, and messaging. Everyone belongs in this movement.