Lack of endometriosis awareness adds years to diagnosis, report finds

New research has found a lack of awareness can delay an endometriosis diagnosis - a process which can already take nearly a decade.

In a study involving 650 endometriosis patients, those who had no awareness of endometriosis when their symptoms began experienced a median diagnostic delay of 11 years, compared with nine years for those who knew about the condition.

It's part of an ongoing research project from Endometriosis New Zealand and the University of Canterbury - 'Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand' - which investigates how the condition impacts the 120,000 New Zealanders living with it.

The survey found 47 percent of respondents had never heard of endometriosis when their symptoms first began, while less than five percent felt well informed or very knowledgeable about the condition.

Endometriosis NZ chief executive Tanya Cooke said it showed how awareness had a direct impact on how quickly people recognised symptoms and sought help.

"Too many people in New Zealand are still spending years in pain without knowing that what they are experiencing may be endometriosis," she said.

Only a third of respondents felt information about endometriosis had been readily available to them.

"When people do not know what endometriosis is or cannot recognise their symptoms, they are more likely to spend years in pain without answers," Cooke said.

Melissa Aubroeck, aged 43, experienced symptoms for 15 years before she heard about endometriosis.

"I had mentioned to several doctors over the years that I thought my pain could be hormone related, but no one ever mentioned endometriosis to me," she said.

It was raised with her by a new GP, and within six months, Aubroeck had an ultrasound and an MRI which found deep infiltrating endometriosis, adenomyosis and three fibroids.

"I am grateful that someone finally recognised what might be going on, but it is hard not to think about how different things could have been if endometriosis had been raised earlier."

The research found the most common way respondents first learnt about endometriosis was through family members or friends, followed by medical practitioners.

Cooke said it reinforced the need for a coordinated national response to endometriosis.

"New Zealand does not currently have a National Endometriosis Action Plan or any nationwide programme specifically aimed at improving awareness, diagnosis, treatment and support for endometriosis ."

Lead researcher Katherine Ellis, PhD candidate at the University of Canterbury, said the findings highlighted the importance of early and accurate information.

"Endometriosis is a complex condition with a wide range of symptoms, and many people do not immediately recognise that what they are experiencing could be part of a chronic disease."

*The Impact of Awareness on Endometriosis Journeys, by K Ellis, J F Donoghue, and R Wood, has been published on the Australian and New Zealand Journal of Obstetrics and Gynaecology (ANZJOG). Further results from the wider research project will be published over the coming months.