Endometriosis in Aotearoa: Why Most Patients Wait a Decade for Answers

A landmark New Zealand study published in 2026 has put numbers to something many of my patients already know in their bones: the journey to an endometriosis diagnosis is far too long, and far too hard.

The research, published in the Australian and New Zealand Journal of Obstetrics and Gynaecology by Ellis, Donoghue and Wood, surveyed 657 New Zealanders living with endometriosis. What they found should prompt all of us, clinicians, educators, families and communities, to do better.

Nearly Half Had Never Heard of Endometriosis When Their Symptoms Began

The most striking finding: 47.3% of respondents had never heard of endometriosis when their symptoms first started. Only five people in the entire survey felt well-informed about the condition at that time.

This matters enormously. The study found that patients who had no awareness of endometriosis at symptom onset waited a median of 11 years to reach a diagnosis, compared to 9 years for those who had at least heard of the condition. That’s a two-year difference, simply from knowing the word exists.

The overall median diagnostic delay in this cohort was 10 years from symptom onset. Ten years of pain, uncertainty, and often dismissal, before a name is finally given to what someone has been experiencing.

It’s Not Just Bad Periods

One of the most important messages from this research is that endometriosis is routinely misunderstood as a period problem. It isn’t.

Endometriosis can cause pelvic pain, painful intercourse, infertility, fatigue, leg pain, bowel and bladder symptoms, allergies, and even cold intolerance. Symptoms can appear cyclically, which makes them easy to dismiss or normalise. Many patients in this and other studies describe years of being told their pain was “just bad periods”, or that they were overreacting.

Survey respondents were clear about what the public needs to understand: that endometriosis is a serious, chronic, and often debilitating condition, and that it is not “just bad periods.”

Where Are People Getting Their Information?

The study found that most people first heard about endometriosis through friends and family (around 34% combined), followed by healthcare practitioners (27%), and online searches (16%). Once aware, the vast majority, 77.9%, turned to the internet for further information.

Online resources are easily accessible, but quality is uneven. The researchers note significant concerns in the literature about inaccurate information circulating online, including misinformation that can actively delay diagnosis.

Social media platforms, particularly Facebook, Instagram and TikTok, were used by around 15% of those accessing online resources. This is both an opportunity and a responsibility for healthcare providers to be present in these spaces with accurate, compassionate information.

What Patients Said They Actually Need

Respondents were asked what resources would be most valuable, for the general public, for school students, and for patients themselves. Their answers were consistent:

• For the public: Understand what endometriosis actually is. Understand how widespread and serious it is. Understand that patients are not overreacting.
• For students: Be able to recognise symptoms in themselves or peers. Know where to turn for help. Understand what “normal” and “abnormal” periods look like.
• For patients: Clear pathways to access treatment and support. Better tools for managing symptoms. Guidance on self-advocacy when navigating the healthcare system.

The Access Gap

The survey also captured patients’ perceptions of how available endometriosis care has been to them. The results are sobering:

• Only 33.5% felt information about endometriosis had been readily available
• Only 21.9% felt they had received adequate support from healthcare practitioners
• Only 17.7% felt diagnosis had been accessible
• Only 23.8% felt treatment options had been available to them

Younger patients were more likely to feel they had social support through friends and family, but older patients, particularly those still awaiting a confirmed diagnosis, reported the lowest confidence in accessing both diagnosis and treatment.

What This Means in Practice

As a gynaecologist, these findings reinforce what I hear regularly in clinic. People arrive having spent years being told their symptoms were normal, or that nothing could be found. Many have done their own research, often from unreliable sources, because they had nowhere else to turn.

The message from this research is clear: earlier awareness, better education, and more accessible specialist care can shorten the path to diagnosis and reduce years of unnecessary suffering.

If you have been experiencing symptoms that you suspect may be endometriosis, including pelvic pain, painful periods, pain with intercourse, fatigue, or fertility difficulties, please don’t wait another decade. These symptoms deserve to be taken seriously.

A Note on Equity

The researchers rightly highlight that new resources must be co-designed with patients, clinicians, and members of marginalised communities, including Māori, Pasific, and LGBTQIA+ people, to ensure they reflect the full diversity of endometriosis experiences in Aotearoa. 12.5% of this survey’s respondents identified as NZ Māori, and the specific experiences of Māori and Pasific patients with endometriosis care deserve dedicated attention.

If you have questions about endometriosis symptoms, diagnosis, or treatment, Dr Sam Holford welcomes enquiries. Early specialist assessment can make a significant difference to your journey.

Source Article

Ellis K, Donoghue JF, Wood R. ‘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. 2026;66:e70155. https://doi.org/10.1111/ajo.70155