Endometriosis New Zealand

A new insight from our research with the University of Canterbury, Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand, has now been published.

The Impact of Awareness on Endometriosis Journeys explores how awareness of endometriosis — or the lack of it — can influence people’s pathways to diagnosis, treatment, and care.

First, we want to thank everyone who shared their experiences by taking part in this research. Your voices are helping build robust, New Zealand-specific evidence that will support the need for improved awareness, earlier diagnosis, better treatment, and ongoing support.

Here’s what you told us:

• 47% of respondents had never heard of endometriosis when their symptoms first began.
• People who were unaware of endometriosis when their symptoms started experienced a median diagnostic delay of 11 years, compared with nine years for those who had some awareness.
• The most common way people first learnt about endometriosis was through a family member or friend, followed by a medical practitioner.
• Only one in three respondents felt information about endometriosis was readily available to them.

These findings highlight that awareness matters.

Understanding what endometriosis is, recognising the signs, and knowing when to seek support can help people access care sooner and reduce the time spent waiting for answers.

👇 Read the full results here: https://obgyn.onlinelibrary.wiley.com/doi/10.1111/ajo.70155

This is the first published insight from our wider research series. Further findings will be shared over the coming months, including insights into the impact of endometriosis on work and daily life.

Reference: K. Ellis, J. F. Donoghue, and R. Wood, “‘Not Just Bad Periods’: Survey of Aotearoa New Zealand Endometriosis Patients on Their Perspectives on the Impact of Endometriosis Awareness,” Australian and New Zealand Journal of Obstetrics and Gynaecology 66, no. 3 (2026): e70155.

Endometriosis affects at least 120,000 New Zealanders, yet too many people still face long delays to diagnosis, inequitable access to treatment, and major impacts on their health, education, work and finances.

Behind the statistics are people waiting years for answers, missing work or study, and trying to manage symptoms that can affect every part of life.

Today we are releasing Endometriosis New Zealand’s 2026 Election Manifesto and calling on political parties to commit to practical action.

Our two main priorities are:
▪ A National Endometriosis Action Plan for New Zealand
▪ Adoption of the new RANZCOG Australian Living Evidence Guideline: Endometriosis

Supported by two additional policies:
▪ Ensuring adenomyosis is included in this work
▪ Continued improvements to Pharmac’s funding model

These are practical steps that would help reduce diagnosis delays, improve access to treatment, support better care and create a stronger national focus on endometriosis.

Read the manifesto here –https://nzendo.org.nz/wp-content/uploads/2026/06/Endo_Manifesto_2026_FAv2-2.pdf

Please read, share and help us keep endometriosis on the political agenda.

Endometriosis & Nutrition 🥝

There’s no one-size-fits-all “endo diet,” but nutrition can play a big role in supporting your health and managing symptoms.

✅ Focus on anti-inflammatory foods – think Mediterranean-style eating: plenty of fruit, veg, legumes, wholegrains, nuts, seeds, oily fish, and lean proteins.
🌾 Increase fibre (especially soluble fibre) to support bowel regularity and help lower circulating oestrogen — but note some types of fibre may worsen IBS, so personalised advice can help.
⚠ Limit foods that fuel inflammation, like processed meats, sugary drinks, fast foods, and excess alcohol or caffeine.
🌱 If gut symptoms like bloating, pain, or bowel changes are a challenge, conditions like IBS may overlap with endometriosis. A low FODMAP trial (with dietitian support) can sometimes help.
💊 Supplements may be needed for deficiencies (like iron or vitamin D) but should be guided by blood tests and professional advice.

Everyone’s body is different, so getting tailored support from a qualified dietitian or nutritionist is key.

👉 Find a Dietitian: dietitians.org.nz
👉 Find a Nutritionist: nutritionsociety.ac.nz
👉 Read more here: https://nzendo.org.nz/ask-an-expert/endometriosis-nutrition-dietitian-guidance/

Information provided with thanks to Alice Gormack – NZ Registered Dietitian (BSc, PGDipDiet, MHSc)

Not sure what to ask your GP about endometriosis? 🤔

We've gathered some of the most common questions and asked them on your behalf.

General Practitioner and Clinical Advisor Committee Member, Dr Orna McGinn, shares expert answers to help you better understand and manage your symptoms.

Read the full article of Q&As 🔗 https://nzendo.org.nz/ask-an-expert/endometriosis-questions-answered-by-a-gp/

Yesterday would have been Marilyn Monroe's 100th birthday.

While she is remembered as a cultural icon, Marilyn also lived with endometriosis – a condition that affected many aspects of her life, including chronic pain and fertility challenges.

Endometriosis may feel like a modern health issue because we're hearing more about it than ever before. But people have likely been living with its symptoms throughout history.

Marilyn's story is a reminder that endometriosis isn't new. What has changed is awareness, diagnosis, and the recognition that severe period pain and pelvic pain should not be ignored.

The progress we've made is thanks to the generations of people who shared their stories, the researchers who sought answers, the clinicians who pushed for better care, and the advocates and founders who worked tirelessly to bring endometriosis out of the shadows.

There is still a long way to go, but every conversation helps more people find answers, support, and treatment sooner.

The pain isn't new. The awareness is.💛

We’re hiring | Operations Coordinator

Join the team at Endometriosis New Zealand and help support meaningful work that improves the lives of people affected by endometriosis across Aotearoa.

We’re looking for a highly organised and proactive Operations Coordinator to support the smooth day-to-day running of the organisation through administration, executive assistance, event coordination, resource distribution, and funding administration.

This is a varied role suited to someone who:
✨ Thrives in a collaborative small-team environment
✨ Has strong administration and organisational skills
✨ Can confidently manage multiple priorities
✨ Is passionate about making a difference in the community

📍 Christchurch CBD
🕒 20 hours per week (0.5 FTE)
📅 12-month fixed-term contract

If you’re looking for meaningful work with purpose, we’d love to hear from you.

Apply via SEEK: https://nz.seek.com/job/92328610?ref=search-standalone&type=standard&origin=showNewTab =74ed1ec96e4b3c64dbe97b46e7e0cf4afc9ee857

Managing endometriosis looks different for everyone but having the right information and support can make a real difference.

Join our Managing Your Endo webinar series replay this May–June as expert speakers explore practical, evidence-informed approaches to endometriosis management across four sessions:

✨ The Basics with Dr Amelia Ryan
✨ Wellbeing with Leena St Martin
✨ Nutrition with Alice Gormack
✨ Movement with Caitlin Fris

Learn more about symptom management, hormones, emotional wellbeing, nutrition, pelvic health, movement, and supportive self-management strategies from experienced health professionals.

📆 Wednesdays – 6:30pm
📆 Saturdays – 12:00pm

Whether you join one session or the full series, we’d love to have you there.
Register and learn more 👉 https://nzendo.org.nz/nzendo-events/

Managing endometriosis looks different for everyone — but the right support and information can make a real difference.

Join our Managing Your Endo webinar replay series this May–June and hear from expert speakers on:

✨ The Basics
✨ Wellbeing
✨ Nutrition
✨ Movement

Gain practical, evidence-informed insights into symptom management, hormones, pelvic health, emotional wellbeing, and self-management strategies.

📆 Wednesdays – 6:30pm
📆 Saturdays – 12:00pm

Join one session or the full series. We’d love to see you there.

Register now 👉 https://nzendo.org.nz/nzendo-events/

Menstrual Health Awareness Month reminds us that many symptoms' people have been told to “just live with” are not normal.

Severe period pain, heavy bleeding, fatigue, bowel symptoms, pain during s*x, and symptoms that disrupt daily life can be signs of conditions like endometriosis or fibroids.

This year’s theme, “What’s Been Normalised Isn’t Normal,” challenges the idea that debilitating menstrual symptoms are simply part of being a woman.

Too many people delay seeking help because their pain has been minimised or dismissed. Raising awareness about menstrual health means:

✅ breaking stigma
✅improving education
✅ supporting access to care
✅ recognising menstrual health as a public health issue

No one should have to miss school, work, opportunities, or daily life because of untreated menstrual health conditions.

For many people living with endometriosis, being told their pain is “normal” is an experience that is all too familiar.

Our community member Abbey spent years seeking answers through hospital visits, ongoing symptoms, and repeated attempts to be heard before finally receiving a diagnosis.

We are incredibly grateful to Abbey for sharing her story to help raise awareness and understanding of the realities of living with endometriosis, alongside so many others in our community who continue to speak up and advocate for change.

You can read Abbey’s full story on our news blog here 🔗https://nzendo.org.nz/people/12-years-to-diagnosis-abbeys-story/