New research from Endometriosis New Zealand and the University of Canterbury finds that nearly half of endometriosis patients had never heard of the condition when their symptoms first started, a factor linked to delays in diagnosis.
The findings are the first published results from Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand, a major research project designed to build a clearer understanding of how the condition affects the estimated 120,000 New Zealanders living with endometriosis.
Based on the first survey, The Impact of Awareness on Endometriosis Journeys, it was found that 47% of respondents had never heard of endometriosis when their symptoms first began.
Fewer than 5% reported feeling well-informed or very knowledgeable about the condition.
Those who had no awareness of endometriosis at the onset of symptoms experienced a median diagnostic delay of 11 years, compared with nine years among those who had at least some prior awareness.
“Too many people in New Zealand are still spending years in pain without knowing that what they are experiencing may be endometriosis,” Endometriosis New Zealand chief executive Tanya Cooke said.
According to Cooke, the research indicates that individuals who had never heard of endometriosis when their symptoms began experienced, on average, a two-year longer wait for diagnosis compared with those who had some prior awareness.
“That means two more years of uncertainty, missed opportunities for care and painful impacts on their lives.”
The research also found that only one in three respondents felt that information about endometriosis was 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 explained.
The findings reinforce calls for a coordinated national response to endometriosis.
Cooke said, “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.”
“These results show why that needs to change. A National Action Plan can build greater community and clinical awareness backed by better clinical pathways, improved health professional education, adoption of best-practice guidelines and fairer access to diagnosis and treatment.”