500 signatures reached
To: Minister of Health Simeon Brown, and Te Whatu Ora
Women, girls & people assigned female at birth with Endo deserve better: Demand guideline review now
We’re calling on Minister of Health Simeon Brown, the New Zealand Government, and the Ministry of Health and Te Whatu Ora to urgently review, rewrite, and officially adopt national endometriosis (mate kirikopu) guidelines that reflect up-to-date clinical evidence, lived experience from our communities, and Te Tiriti-based equity.
We are calling on the New Zealand Government, Ministry of Health, and Te Whatu Ora to:
- Commission an immediate independent review and rewrite of the current 2020 endometriosis (mate kirikopu) guidelines, led by Endo Warriors Aotearoa in partnership with a national panel of experts and lived experience voices that we will bring together
- Make the new guidelines official, enforceable, and mandated across the health system to ensure consistent and equitable care for all
- Support the establishment and funding of an expert panel — or work alongside Endo Warriors Aotearoa to apply for funding to co-design the new guidelines. This panel will be led by Endo Warriors Aotearoa and include members of our Youth Advisory Board alongside:
- Clinical specialists including gynaecologists, pain physicians, pelvic physiotherapists, and youth health providers
- Māori and Pasifika health leaders
- Disability and neurodiversity advocates
- LGBTQIA+ and gender-diverse community voices
- Community educators and grassroots support providers
Ensure the new guidelines include:
- Clear diagnostic timeframes, red flags, and escalation processes
- Funded access to multidisciplinary care including pain management, mental health, and physiotherapy
- Non-hormonal and holistic treatment options made visible and validated
- Specific guidance for adolescents, disabled people, neurodivergent people, and those navigating gender identity
- A national registry to track wait times, surgical outcomes, and regional disparities
- Consistent, inclusive language and trauma-informed approaches throughout
Why is this important?
No matter who we are, or where we come from, we all deserve to live a life of dignity, free of pain and struggle. A life where we are believed and we have access to the care that we need. However, there are thousands of us every day who live in the abrupt edges of medical understanding and right now, there are far too many women, girls, and people assigned female at birth are being dismissed, misdiagnosed, or denied access to the care and support they need. [3][6].
At least one in seven women, girls, and people assigned female at birth in Aotearoa live with endometriosis (mate kirikopu), a chronic and often disabling inflammatory condition that causes pelvic pain, fatigue, infertility, and damage to multiple organs [1][10]. Despite this, most with endometriosis (mate kirikopu)are not being taken seriously by our health system.
The national endometriosis (mate kirikopu) guidelines, last released in 2020 by the Ministry of Health, were never intended to be formal clinical guidance [11]. They are not mandatory, they are missing key protections, and they are letting them fall through the cracks.
The current guidelines are not fit for purpose, they are outdated, non-binding, and were never designed to function as formal clinical guidelines. In practice, this leaves women, girls, and people assigned female at birth with endometriosis (mate kirikopu) facing inconsistent care, delayed diagnoses, and limited access to the treatment they need to live full, healthy lives. The current guidance lacks clear timeframes for action, formal referral pathways, youth-specific approaches, accountability mechanisms, and adequate inclusion of Māori, Pasifika, LGBTQIA+, and disabled communities.
Too often, those with endometriosis (mate kirikopu) are passed between GPs and emergency departments for years without answers. The average time to diagnosis in Aotearoa is still 7 to 10 years [2][7]. That means they are missing school, losing jobs, giving up dreams of having tamariki, or falling into depression and isolation before they are even believed [3][5][6].
For marginalised groups, the situation is even worse. Young people, Māori, Pasifika, disabled and gender-diverse people are more likely to be dismissed, misdiagnosed, or denied access to care. [3][6].
That means many healthcare providers don’t follow it, and there are no consequences when patients are ignored, misdiagnosed, or left untreated.
We need more than just suggestions. We need mandatory, enforceable standards that every health provider in Aotearoa must follow. We need guidelines that uphold mana, affirm lived experience, and work for all, not just a privileged few who can afford private care or know how to fight the system.
Studies show that:
- The impacts of Endometriosis (mate kirikopu) go far beyond physical pain, impacting mental health, daily functioning, and overall wellbeing with those affected
- Up to 98% of women, girls, and people assigned female at birth with endometriosis (mate kirikopu) experience symptoms of depression, and around 87% experience anxiety [1]. These mental health struggles are often made worse by diagnostic delays, medical gaslighting, and lack of access to effective treatment and support [2][3].
- Women, girls, and people assigned female at birth with endometriosis (mate kirikopu) report a significantly reduced quality of life compared to the general population, especially in the areas of physical function, emotional wellbeing, sexual health, and work productivity [4][5]. This is not just due to pain, but also the psychological toll of being dismissed, misdiagnosed, or ignored by the healthcare system [3][6].
- Research also shows that youth with endometriosis (mate kirikopu)-like symptoms are often told their pain is normal, resulting in long-term harm to mental health, school attendance, and body trust [7].
Without guidelines that address these impacts holistically and offer clear, equitable pathways to care, women, girls, and people assigned female at birth will continue to fall through the cracks. We need guidelines that work in real life, not just on paper.
A community-led review by Endo Warriors Aotearoa and our Youth Advisory Board outlines how the current guidance fails us. It shows the harm caused by relying on hormonal contraception as the default treatment [3] [6], how hard it is to access skilled excision surgery [2] [7], and how little support exists for holistic or culturally grounded pain management [3].
He wā tēnei. It is time.
Sign the petition today and stand with our hāpori to demand a new standard of care for endometriosis (mate kirikopu) in Aotearoa, a new standard that embeds lived experience, Māori and Pasifika voices, youth insight, and gender diversity into every part of care, a health system that believes us, supports us, and works for us.
References:
[1] Armour, M., et al. (2019). The prevalence and impact of endometriosis symptoms on quality of life among young women: a cross-sectional study. BJOG, 126(6), 755–759.
[2] Ballard, K., Lowton, K., & Wright, J. (2006). What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility and Sterility, 86(5), 1296–1301.
[3] Culley, L., et al. (2018). The social and psychological impact of endometriosis on women’s lives: A critical narrative review. Human Reproduction Update, 24(6), 625–639.
[4] Riazi, H., et al. (2014). Clinical diagnosis of pelvic endometriosis: a scoping review. BMC Women’s Health, 14(1), 73.
[5] Jones, G., Jenkinson, C., & Kennedy, S. (2004). The impact of endometriosis on quality of life: a qualitative study. BJOG, 111(4), 410–418.
[6] Denny, E., & Mann, C. H. (2007). Endometriosis and the primary care consultation. Eur J Obstet Gynecol Reprod Biol, 132(2), 224–228.
[7] Missmer, S. A., et al. (2014). Incidence of laparoscopically confirmed endometriosis by demographic, anthropometric, and lifestyle factors. Am J Epidemiol, 179(6), 721–730.
[8] Missmer, S. A., et al. (2014). Incidence of laparoscopically confirmed endometriosis by demographic, anthropometric, and lifestyle factors. Am J Epidemiol, 179(6), 721–730.
[9] Zhang, T., et al. (2020). The link between endometriosis and autoimmune diseases. Frontiers in Immunology, 11, 339.
[8] Missmer, S. A., et al. (2014). Incidence of laparoscopically confirmed endometriosis by demographic, anthropometric, and lifestyle factors. Am J Epidemiol, 179(6), 721–730.
[9] Zhang, T., et al. (2020). The link between endometriosis and autoimmune diseases. Frontiers in Immunology, 11, 339.
[10] Ministry of Health. (2020). Diagnosis and Management of Endometriosis in New Zealand. Wellington: Ministry of Health. “While not a formal clinical guideline, it provides a consensus view of best-practice principles.” (p. 2)