Endometriosis New Zealand

Our Chief Executive, Tanya Cooke, caught up with Dr Ayesha Verrall yesterday, Health Spokesperson for the New Zealand Labour Party.

They had a valuable conversation about the urgent need to reduce the unacceptable delay in diagnosing endometriosis in Aotearoa and the opportunity to improve how the condition is managed within both primary care and specialist services.

We highlighted the importance of a national Endometriosis Action Plan—one that delivers better outcomes, faster diagnosis, and equitable access to care for all those affected by this chronic and often debilitating condition.

Let’s keep the momentum going! People living with endometriosis deserve nothing less.✨

Join us on Wednesday, 16th July at 6.30pm for a webinar replay of 'Surgery and what to expect' with Dr Fiona Connell.

Whether you have been through an endometriosis surgery or are preparing for your first - or you know someone who is having surgery soon and would like to learn more, this event is for you. Fiona will provide information about what happens pre-op, during surgery, post op, and more. Fiona is highly experienced in the field of endometriosis care and surgery and this will be a great webinar that we hope you can join.

To find out more and register for this free webinar click here: https://streamyard.com/watch/vCifURvcTSAk

Media Spotlight on new Endometriosis Research!

Our very own Researcher Coordinator and PhD candidate Katherine Ellis from the University of Canterbury is leading a crucial new research project, and it's making waves in the media! 🚨 This study will gather key data on endometriosis to inform health policies and care for the 120,000 people impacted by the condition in Aotearoa.

💬 Katherine shared, “This research will help turn lived experiences into real policy change."

📊 Why it matters: Women 18+ with suspected or confirmed endometriosis can take part in monthly surveys, contributing to NZ-specific data that will push for lasting change.

Let’s help get the attention this cause deserves. Your voice matters! 💛

Check out the RNZ article on our webpage here: https://nzendo.org.nz/endo-news/media-release-nz-endometriosis-research-to-influence-local-policy-making/

Endometriosis New Zealand is partnering with a research team based at the University of Canterbury to gain insight into the experiences of endometriosis patients navigating endometriosis care in Aotearoa New Zealand.

We would now like to invite all eligible participants to take part. Participants must be over 18, reside in Aotearoa, New Zealand, and have either suspected or confirmed endometriosis after surgery.

Our first survey topic for 2025 is about the impact of endometriosis awareness. This month we will be asking about when and how you found out about endometriosis, how you think this influenced your endometriosis journey, and what information resources you think the general public, students, and patients should have.

Each month you can opt to go in a draw to win a gift box valued at $100 donated by Miller Road. There will be one gift box available each month.

The survey should take no more than 5-10 minutes. Participation in the survey is considered consent to participate. The link to the survey is here: https://canterbury.qualtrics.com/jfe/form/SV_6LsA9Tw5lrXzntI

If you have any questions, please contact Katherine Ellis at [email protected]

Living with endo? Your voice matters. 💛

We’re kicking off our 2025 Research Project — and we’re inviting you to be part of something that could help change the future for people living with endometriosis across Aotearoa.

This first survey is about you.

✔️ Share a bit about who you are.
✔️ Let us know if you’d like to take part in future surveys.
✔️ Help shape services, support, and research that reflect real experiences.

By signing up now, you’ll get unique links for future surveys — so you won’t need to fill out the same questions every time.

This is your chance to be heard. 💬
To be counted.
To help make change.

Check out the latest media release in the comments and start the survey today! ⬇

Join us for the replay of our "How to talk with your GP" webinar, hosted by Dr Orna McGinn, a women’s health expert, GP and member of our Clinical Advisory Committee, and Megan, a practical lived experience speaker. They will cover how to:
✅ Prepare for your GP appointment
✅ Communicate your symptoms and needs clearly
✅ Use tools like symptom trackers and the RATE tool
✅ Leave your appointment with a clear plan
Whether you’re newly diagnosed or still seeking answers, this free session is packed with empowering tips and support.
Register here: https://nzendo.org.nz/nzendo-events

As we welcome the Māori New Year, we take a moment to reflect, remember, and look ahead with hope.

Matariki is a time for renewal, connection, and caring for ourselves and others.

From all of us at Endometriosis New Zealand — we wish you a peaceful and meaningful Matariki.

Endometriosis New Zealand is partnering with a research team based at the University of Canterbury to gain insight into the experiences of endometriosis patients with navigating endometriosis care in Aotearoa New Zealand.

We would now like to invite all eligible participants to take part. Participants must be over 18, reside in Aotearoa, New Zealand, and have either suspected or confirmed endometriosis after surgery.

The purpose of the survey this month is for you to have an opportunity to express your interest to participate in our 2025 Research Project by providing your demographic information and sharing your email in order to be sent further invitations to participate directly. By signing up to participate now, you will be sent unique links to participate in the surveys throughout the year, which will make those surveys shorter as you will not need to share your demographics each time.

Each month you can opt to go in a draw to win a gift box valued at $100 donated by Miller Road. There will be one gift box available each month.

The survey should take no more than 5-10 minutes. Participation in the survey is considered consent to participate. The link to the survey is here: https://canterbury.qualtrics.com/jfe/form/SV_2f3Oh4v9gl22PfE

If you have any questions, please contact Katherine Ellis at [email protected]

Getting Through the Flare: What Actually Helps

We asked our community: What gets you through a flare?
Here are your go-to strategies for those tough days.
Swipe through for real, comforting tips that can make a difference:

🌡️ Heat it Up
💧 Sip & Soothe
🚶 Move Gently
🕯️ Create Your Haven
🧘 Mindful Self Care
💊 Prep & Plan
🤗 Don’t Go Alone

You've got this.
Save and share with someone who needs to hear it today.

Endo Flares: More Than Just a Bad Day
A recent study confirms what many living with endometriosis and chronic pelvic pain already know: flares are real, frequent, and disruptive.
🔸 76% of participants reported experiencing symptom flares
🔸 60% said flares disrupted their ability to function
🔸 80% found flares mentally exhausting
🔸 Flares include both pain and non-pain symptoms – and they vary greatly
But here’s the tough part: many people don’t contact healthcare providers during a flare, despite the toll it takes on their daily life.
This research, led by Lydia Coxon, shines a light on the urgent need to recognise, study, and treat flares as a key part of managing chronic pelvic pain – including endometriosis.
📣 It’s time to talk openly about flares.
📣 It’s time to take them seriously.
📣 It’s time for care that sees the whole picture

“Hearing about others’ difficulties with GPs — and getting practical, empowering advice to improve my own future interactions — was incredibly valuable.”

That’s what one attendee shared after our -How to Talk to Your GP about Endometriosis webinar.

We know these conversations can be tough. That’s why we’re here — to equip you with the tools, confidence, and support to be your own best health advocate.

Missed it? Keep an eye out for more webinars coming soon

120,000 people in Aotearoa are living with endometriosis.
Many are still waiting years for a diagnosis and struggling to access the care they need.

You can help change that.
Your donation supports earlier diagnosis, better care, and fairer access to treatment across New Zealand.

Donate today and make a real difference.
https://nzendo.org.nz/donate