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Petition Update | Independent Review and Rewrite of
Aotearoa/NZ Endometriosis Guidelines

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Earlier this year, Endo Warriors Aotearoa presented our petition to Parliament calling for an independent review and rewrite of New Zealand’s endometriosis guidelines. This petition was formally presented by Kahurangi Carter MP and has now been referred to the Petitions Committee.

 

Our petition was created because too many people across Aotearoa continue to experience years of delayed diagnosis, dismissal of symptoms, inconsistent care, and major barriers to accessing appropriate treatment and support. Current guidance is outdated and not enforceable, meaning care can vary significantly depending on where someone lives, what they can afford, and who they are able to access for care.

 

Since presenting the petition, Endo Warriors Aotearoa has been invited to provide a written submission to the Petitions Committee. Our submission expands on the concerns raised by our community and includes evidence from lived experience, our Endometriosis Guidelines Review, Our Pain, Our Truth, and current research highlighting the ongoing impact of delayed diagnosis and inadequate care.

 

Our submission focuses on the need for:

• An independent review and rewrite of current endometriosis guidance

• Nationally consistent and evidence-based care

• Better recognition of endometriosis as a whole-body condition

• Earlier diagnosis pathways

• Improved access to multidisciplinary support

• Stronger accountability and implementation across the health system

• Greater inclusion of lived experience voices in policy and healthcare design

 

This work is deeply informed by the experiences shared with us by our community. Every story, message, and piece of feedback continues to reinforce the urgent need for change.

 

We believe lived experience must be at the centre of healthcare reform. This submission reflects the voices, experiences, and concerns shared with us by people across Aotearoa who continue to face significant barriers to diagnosis, treatment, and support.

 

As part of this process, we have now publicly shared our written submission so our community can see the recommendations, concerns, and evidence presented to the Petitions Committee.

You can read our full written submission here:

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Alongside our written submission, we are also sharing Our Pain, Our Truth, a collection of lived experience stories contributed by people across Aotearoa affected by endometriosis. These stories highlight the real and ongoing impact of delayed diagnosis, dismissal within the healthcare system, barriers to accessing care, financial strain, and the physical and emotional toll endometriosis can have on everyday life. While every experience is different, together they paint a powerful picture of why change is urgently needed.

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We are incredibly grateful to everyone who trusted us with their stories. Lived experience has been central to this petition and continues to guide our advocacy for better care, recognition, and support for people living with endometriosis in Aotearoa.

You can read Our Pain, Our Truth here:
 

We know this process can take time, but this is an important step forward in pushing for better care, recognition, and outcomes for people living with endometriosis in Aotearoa. We will continue to keep our community updated as the petition progresses.

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Thank you to everyone who signed, shared their story, supported the petition, and continues to stand alongside us in this mahi.

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For Media, Organisations, or Collaboration Enquiries

If you're from the media, a health organisation, community group, or advocacy network and would like to learn more about this petition or our guidelines review, we’d love to hear from you. We welcome interviews, speaking opportunities, partnerships, and kōrero around how we can collectively improve endometriosis care in Aotearoa.

To request a media pack, quote, or further information, please get in touch HERE

View Our Suggested Changes and Guidelines Review

We’ve created a detailed, community-led review of the 2020 National Endometriosis Guidelines to highlight the urgent changes needed in Aotearoa’s approach to endometriosis (mate kirikopu) care.

This review, developed by Endo Warriors Aotearoa with input from our Youth Advisory Panel and reviewed by a medical professional, outlines what’s missing in the current guidelines and provides clear, actionable recommendations for change.

Inside, you’ll find:

  • A summary of where the current guidelines fall short

  • Suggested updates to language, treatment options, and access to care

  • Emphasis on inclusive, equitable, and evidence-based care

  • A call to embed Te Tiriti-based equity and reflect the needs of Māori, Pasifika, disabled, and rainbow communities

 

Our goal is to place the voices of the endo hāpori (community) at the centre of health policy, and this document is a step toward that. The rewrite is being led by Endo Warriors Aotearoa and our Youth Advisory Board, in partnership with a national panel of experts, clinicians, and lived experience voices. Together, we are working to build guidelines that are inclusive, enforceable, and grounded in both evidence and real-life experience.

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We know this isn’t finished. If you live with endo, have supported someone through it, work in endometriosis care, are part of the health sector, or belong to an organisation that supports affected communities, we invite you to read the review and share your whakaaro (thoughts), experiences, or suggestions. Your insight will help us strengthen this kaupapa and ensure it truly reflects the needs of everyone impacted.

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Click the button below to view the guideline changes, this form also includes links to the appropriate feedback form (for the public, health professionals, and organisations)

FAQs

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 Yessenia founder of 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.
 

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