A new study has just been released, examining the true cost of endometriosis for New Zealanders living with the condition, and the burden on the country as a whole.
It finds that the cost to those living with the condition stretches into the millions of dollars, while the overall cost to Aotearoa is in the billions, driven by lost work, reduced productivity and the cost of care.
This study draws on research our endometriosis community participated in back in 2021 and is separate from the new research project Endometriosis NZ is currently leading with the University of Canterbury.
What it shows will not be surprising to those who deal with endometriosis every day – endometriosis has an enormous effect on individuals, families, workplaces, and our economy. It affects education, earnings, relationships, mental health, fertility, and the ability to participate fully in daily life. Too many people are left navigating the condition alone, within systems that are slow, inconsistent and inequitable.
While the Cost of Endometriosis and Chronic Pelvic Pain Burden in New Zealand (Aotearoa) study quantifies the economic impact of endometriosis in New Zealand for the first time, the heart of the issue isn’t just the numbers but the impact on the people behind them. The diagnostic delays, the dismissal of symptoms, the long wait for treatment, and the sometimes-crippling financial burden.
Lilly’s story reflects this human reality. Lilly, who is 23, first experienced endometriosis symptoms at age 12. She went through countless different contraceptives and pain-relief medications, all without answers. Over the past two years her symptoms have become severe, resulting in multiple trips to after-hours clinics or emergency departments. Unfortunately, she is still waiting to see a gynaecologist through the public health system.
Lilly’s condition has significantly impacted her ability to work, with extreme bouts of pain and unsympathetic employers combining to force her out of her last job.
“This illness is deeply isolating,” says Lilly. “The constant pain, unpredictability, and limitations have taken a significant toll on my ability to hold down a job, complete basic daily errands and maintain relationships. All this is having a major impact on my mental health.”
Piper is another young New Zealander whose life has been derailed by endometriosis. She first sought help at 14 but was repeatedly dismissed. It wasn’t until she switched to a GP who recognised the symptoms, and because she had private insurance, that she finally received specialist care. At 18, surgery confirmed stage 4 endometriosis.
Now 21 and a devoted young mum, symptoms continue to disrupt Piper’s ability to study and hold down work. She had to withdraw from her social-work degree, and employers often question her reliability, despite her determination. On her worst days, even caring for her toddler is a physical battle.
“We deserve more than being told to ‘cope’ with birth control and pain meds,” Piper says. “Without private insurance, I might still be waiting for a diagnosis.”
Stories like Lilly’s and Piper’s are why Endometriosis New Zealand is calling for the Government to develop and implement a National Endometriosis Action Plan.
That is why Endometriosis New Zealand is calling for a National Endometriosis Action Plan to:
– Drive earlier diagnosis
– Ensure fair and timely access to treatment
– Address inequities in care
– Enable people to stay in education and participate in work
– Deliver more New Zealand-specific research
Addressing endometriosis is not only a women’s health priority, but also a national imperative. When thousands of people are unable to study or work because of unmanaged or undiagnosed pain, the impact is felt right across our society.
We want to acknowledge the research team for undertaking this important work and shining a much-needed light on an issue too often overlooked.