Originally published by NZ Herald, March 10, 2025. Written by Tanya Cooke.
THREE KEY FACTS:
- Endometriosis is a common inflammatory disease estimated to affect 176 million individuals worldwide in their reproductive years and 120,000 in NZ.
- In most cases, there can be symptoms including period pain, pelvic pain and subfertility or infertility.
- The average wait time for a diagnosis of endometriosis in New Zealand is about 10 years.
Endometriosis is a chronic and often painful inflammatory condition affecting around one in 10 girls, women and people assigned female at birth.
Unfortunately, it remains under-recognised and underappreciated within our health system, a situation that is impacting the lives of around 120,000 New Zealanders currently living with “endo”.
Despite its prevalence, those with endometriosis in New Zealand face an average delay of almost 10 years between the onset of symptoms and diagnosis. They also struggle to access the specialist care and treatment they need once a diagnosis has been found. This all leads to profound impacts on their work and education, as well as quality of life, mental health and fertility.
March is global Endometriosis Awareness Month, and this year in New Zealand we are running with the theme “Let’s Talk Endo” – because too often, those with endometriosis feel unheard or dismissed.
I recently profiled the story of Holly as part of our awareness campaign. Holly is a young woman with the world at her feet. Unfortunately, debilitating pain and cramps meant she was missing out on school and the lifestyle normally associated with a typical Kiwi teenage upbringing.
It was only after several years, many visits to the doctor and a determination to push for answers that Holly finally received the surgery required to diagnose her endometriosis and begin treatment.
Holly still has a long, hard road ahead of her and must constantly manage her condition, but so many other New Zealanders’ pain may go undiagnosed and untreated for decades. This should be unacceptable in New Zealand in the 21st century, and is why we must do more to prioritise endometriosis within our health system.
Endometriosis was included in Aotearoa’s first Women’s Health Strategy in 2023, and I am pleased Pharmac is currently considering funding for desogestrel (Cerazette), as this contraceptive can be an effective treatment for endometriosis. These are reasonable steps; however, a co-ordinated approach is needed.
The good news is the blueprint for such an approach already exists across the Tasman.
In 2018, Australia put in place a National Action Plan for Endometriosis, which explicitly focuses on three key areas – awareness and education, clinical management and care, and research.
The early outcomes are promising. The establishment of specialised endometriosis and pelvic pain clinics across Australia has provided multi-disciplinary care, focusing on early intervention and comprehensive management. Additionally, the introduction of funded MRI scans has assisted in the investigation of infertility for those with severe endometriosis, facilitating earlier diagnosis and treatment.
The success of Australia’s approach cannot be ignored, which is why endometriosis sufferers, their supporters and clinicians are advocating for the development and implementation of a similar national action plan here.
A major component of such a plan needs to be education. Increasing awareness among primary healthcare professionals about the symptoms and impacts of endometriosis is essential for early recognition and intervention. Educational programmes could also extend to schools and workplaces to foster supportive environments that acknowledge the daily challenges faced by people like Holly.
Improving clinical management and care is also vital. Currently, New Zealand is suffering from a lack of gynaecologists and other specialists, meaning even when a diagnosis is forthcoming, accessing the treatment required can often take many months or even years. Increased investment in training new specialists is something a national action plan could help achieve.
Current endometriosis diagnosis techniques rely on invasive laparoscopic surgery, as non-invasive options like advanced ultrasounds or MRIs are not widely available through our public health system. Access to hormonal treatments, a cornerstone of symptom management, are also inconsistent and often expensive. A national action plan could address these equity issues.
Research is always important in advancing better healthcare outcomes. A national action plan could help facilitate New Zealand-specific research and lead to a better understanding of endometriosis and its impacts on our communities.
The implications of endometriosis are significant and broadly felt. It is difficult to quantify the cost in wellbeing and quality of life, but lost workforce productivity and increased healthcare expenses due to the condition costs Australia (with five times our population) around $10.7 billion annually.
A national action plan and the initiatives it produces will, of course, come with a price tag, but this will be a fraction of what endometriosis costs us now, and should be seen as a worthwhile and necessary investment.
By learning from Australia’s experience and tailoring our approach to the unique needs of Aotearoa’s communities, we can make a significant difference to the lives of Holly and tens of thousands of other New Zealanders.
This would give us all something to celebrate the next time Endometriosis Awareness Month rolls around.