The average delay to diagnosis for those with endometriosis in New Zealand has reached almost 10 years – that’s a decade from first symptoms until endometriosis is confirmed, according to new research.
The research by the University of Canterbury and Endometriosis New Zealand includes a study of the largest cohort of endometriosis patients ever in New Zealand and reveals an average diagnosis delay of 9.7 years per patient, up from 8.7 years in 2022.
“Increasing delays for diagnosis are heartbreaking for the 10 percent of women and those presumed female at birth estimated to be affected by endometriosis in New Zealand,” says Endometriosis New Zealand Chief Executive Tanya Cooke.
“10 years is an incredibly long time to deal with what can be a very painful and debilitating condition and not knowing what is causing it. It must also be noted that while 10 years is the average, a lot of people are experiencing undiagnosed endometriosis a lot longer than that.”
“It is also concerning that people in higher age brackets are presenting with longer diagnosis delays, with the average for 45–54-year-olds now out to 13.6 years.”
“Delays for older patients support the hypothesis that more people are completely undiagnosed when they are younger and then face long diagnosis delays later in life,” says Cooke
“The research also reveals that diagnosis delays are on average a year longer in the North Island compared to the South Island.”
Typical reasons for delays to diagnosis for endometriosis both internationally and in New Zealand include a lack of understanding of the disease, the normalisation of symptoms, dismissal of suffering and longer delays through state-funded healthcare systems.
“Obviously delays to diagnosis have a significant impact on the quality of life, treatment measures and financial outcomes for endometriosis patients,” says Cooke “Financial costs including the impact on earning potential, the number and frequency of symptoms, and the amount of required treatment all increase over time.”
“A key part of the solution is to provide primary healthcare providers with better education and training when it comes to endometriosis as that will significantly improve their ability to diagnose it,” says Cooke. “This needs to be prioritised as part of the Government’s work into women’s health and the ongoing development of New Zealand’s primary healthcare workforce.”
The research paper, A decade to wait: Update on the average delay to diagnosis for endometriosis in Aotearoa New Zealand, is available by clicking this link.
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