What is wrong with NZs current approach to endometriosis?

Despite affecting approximately 1 in 10 girls, women and people assigned female at birth (an estimated 120,000 New Zealanders), endometriosis remains under-recognised, misunderstood and under-prioritised within New Zealand’s health system:

• The average delay from symptom onset to diagnosis is nearly 10 years.
• Patients often see multiple doctors before being believed.
• Many patients, even after diagnosis, face long waits for specialist care, often enduring debilitating pain without support.
• Access to diagnosis and treatment (e.g. hormonal therapy or surgery) is inconsistent, inequitable, and often costly – with even greater barriers for Māori, Pasifika, and rural communities, leading to delayed care and worse outcomes.

How would a National Endometriosis Action Plan help?

A National Action Plan provides a coordinated, government-backed strategy to improve outcomes for those living with endometriosis. It focuses on three pillars:

1. Education and Awareness.
2. Clinical Management and Care.
3. Research and Innovation.

A National Endometriosis Action Plan would coordinate government, health professionals, researchers, and community groups to work together toward three key outcomes:

1. Earlier recognition and diagnosis.
2. Improved management of the condition with consistent, equitable and effective care.
3. Investment in research.

Earlier recognition and diagnosis

Long diagnostic delays (almost 10 years, on average) can mean years of unmanaged pain, missing out on educational and work opportunities, and severe impact to personal lives and mental health. A National Endometriosis Action Plan would deliver:

• Education and guidance for primary health care providers to help recognise symptoms.
• Improved diagnostic pathways, including publicly funded MRIs and pelvic ultrasounds, along with training for radiologists to report endometriosis investigations.
• Develop protocols for new non-invasive diagnostic tests as they come online.
• Public awareness campaigns to increase awareness among young people, parents and the wider community so symptoms are recognised earlier, and the condition is better understood.
• Comprehensive education and accessible resources on endometriosis for students, teachers, and health staff in schools.

The result = faster diagnosis, fewer years waiting for answers and faster access to treatment.

Improved access to treatment and care

Following diagnosis, many patients in New Zealand still face long waits for treatment depending on where they are in the country and whether they have private health insurance. A National Endometriosis Action Plan would deliver:

• Specialist training for more gynaecologists and other associated specialists.
• Specific endometriosis and pelvic pain clinics that provide holistic care.
• National treatment standards so access to care is not postcode-dependent.
• Prompt development, approval and uptake of new clinical guidelines.
• More equitable access to treatments through improved funding and targeted efforts to reduce disparities for Māori, Pasifika and other priority groups.
• The rollout of multi-disciplinary teams (gynaecology, fertility specialist, pain management, physiotherapy, pain psychology, dietetics, radiology).

The result = faster treatment, less time waiting in pain and more equitable choices no matter where you live.

Investment in research

We still do not know enough about what causes endometriosis or the best way to treat it long term. There is also very little specific data about the condition and its impact in New Zealand. A National Endometriosis Action Plan would deliver:

• New Zealand-specific research into prevalence, treatment outcomes, and Māori, Pasifika and rural experiences.
• Regular data collection and reporting to improve accountability and outcomes.
• Support for New Zealand researchers to innovate on the big questions of endometriosis: understanding the cause, and improving diagnosis and management.

The result = Faster innovation, improved identification of need and a more responsive health system.

What is Australia doing?

In 2018, Australia launched the world’s first National Action Plan for Endometriosis. It was backed by federal government funding and a bipartisan political commitment. It is already making a measurable difference:

• 33 endometriosis and pelvic pain clinics across the country, including:
  • Specialist care from gynaecologists, pain specialists, pelvic physios, and psychologists.
  • Early intervention and diagnosis to reduce delays.
  • Wraparound support, especially in regional and rural areas.
• Access to diagnostic imaging and fertility support through public funding for MRI scans, resulting in:
  • Improving early detection of endometriosis.
  • Avoiding unnecessary delays for those trying to conceive.
  • Making imaging accessible to those who could not otherwise afford it.
• Nationwide education campaigns to raise awareness and reduce stigma through:
  • School resources to help young people understand symptoms early.
  • Workplace Assistance Programs to support employers and employees.
  • Training for GPs and nurses to improve knowledge and referral pathways.
• Investment in research and data, including:
  • Studies on the economic cost of endometriosis.
  • Early work on a national data registry to track outcomes and drive policy.

Australia’s experience shows that a national action plan is not just aspirational but practical, achievable and impactful. Unfortunately, New Zealand also lags behind other comparable countries such as the UK and Ireland, which recognise menstrual and gynaecological health as public health priorities.

Will a National Endometriosis Action Plan be expensive?

Not really. Since its launch, Australia has allocated approximately NZ$95 million to implement the National Action Plan for Endometriosis, which includes the rollout of the 33 specialist endometriosis and pelvic pain clinics.

The fact is, not having a plan to address endometriosis is costing us far more. For Australia, their NZ$95 million doctor investment is to combat a condition that costs them over NZ$8 billion a year. In New Zealand, a recent pre-print indicates that our national burden from endometriosis is similarly in the billions annually, largely through lost productivity and healthcare costs.

What’s the next step?

Endometriosis New Zealand is calling on the Government and all political parties to:

Commit to developing and funding a National Endometriosis Action Plan by following Australia’s lead and tailoring it to the unique needs of our communities.