Media Statement
A third of endometriosis patients had been advised by a medical practitioner to become pregnant to relieve their symptoms, new research has found.
The research also confirms that people with endometriosis in New Zealand experience a median wait of 10 years from the onset of symptoms to diagnosis.
The findings are contained in two reports being published together as part of Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand, a major research project from Endometriosis New Zealand and the University of Canterbury examining the experiences of people living with endometriosis.
Endometriosis New Zealand Chief Executive Tanya Cooke says the pregnancy finding is particularly concerning.
“Pregnancy is not a treatment for endometriosis, and no medical practitioner should recommend that someone become pregnant simply to relieve their endometriosis symptoms.
“Whether to have children is an intensely personal decision. It should never be presented as a treatment plan for endometriosis or other forms of pelvic pain. That one-third of participants in the study had received this advice shows that an outdated understanding of endometriosis remains in our health system.”
“This reinforces the need for improved education and training for primary health professionals who diagnose and treat endometriosis.”
Painful periods, fatigue and lower-back pain were the most commonly reported symptoms experienced by participants in this part of the study.
While 86 percent had been advised by a doctor to use over-the-counter pain relief, such as paracetamol, only around one-quarter found these medications effective for relieving their endometriosis symptoms.
“This shows how difficult symptom management can be for people living with endometriosis,” Cooke says. “Many patients need access to a wide range of evidence-based treatment options and require ongoing support to find the combination of treatments that works for them.”
The study also examined complementary and alternative therapies. No individual therapy was considered effective by more than 70 percent of those who had tried that therapy.
Cooke says this illustrates why there cannot be a one-size-fits-all approach to endometriosis care.
“Care needs to be holistic, multidisciplinary and personalised, supporting each person to find the combination of treatments and approaches that works best for them.”
Within the 10-year median delay, people waited four years before first raising their symptoms with a doctor and a further six years before diagnosis.
“Care needs to be holistic, multidisciplinary and personalised, supporting each person to find the combination of treatments and approaches that works best for them.”
Within the 10-year median delay, people waited four years before first raising their symptoms with a doctor and a further six years before diagnosis.
“Painful periods and other possible endometriosis symptoms are still too often normalised as something people simply have to put up with,” Cooke says.
“Public awareness and the right training for primary health professionals really matter. People need to be able to recognise that their symptoms may not be normal, know when to seek help and have confidence that they will be listened to.”
For more than half of participants, relief was the main emotion they experienced upon diagnosis, reflecting the validation that finally having an answer can provide.
The study also found that one in eight participants underwent a laparoscopy in which no endometriosis was identified, only for the disease to be found during a later laparoscopy. This meant at least two surgeries and more time without an explanation for their symptoms.
“Patients should not need repeated surgery before their endometriosis is identified. They deserve access to the right expertise to get an accurate diagnosis at the first opportunity,” Cooke says.
Lead researcher Katherine Ellis, a PhD candidate at the University of Canterbury, says the research shows that barriers can arise throughout a person’s endometriosis journey.
“Receiving an endometriosis diagnosis is a major challenge in itself but having that confirmation does not necessarily mean the difficulties are over. Many patients continue to face an uphill battle finding treatment approaches that work for them.”
Ellis says the research provides important New Zealand-specific evidence about where improvements are needed.
“The experiences described in this research demonstrate why patients must be listened to, properly informed and actively involved in decisions about their care.”
“GPs, practice nurses and other primary health professionals need the training, support and resources to recognise possible endometriosis, investigate symptoms appropriately, provide effective initial management and make timely referrals when specialist care is needed.”
Cooke says the research findings also strengthen the case for New Zealand to develop a National Endometriosis Action Plan.
“We need a coordinated national programme that brings together awareness, professional education, diagnosis, treatment, research and support. People living with endometriosis deserve to have their symptoms recognised sooner and receive personalised care that gives them the best possible opportunity to successfully manage their condition.”
The Impacts of Diagnosis and Treatments on Endometriosis Journeys is available here.
FAQs
What is Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand?
Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand is a major research project being undertaken by Endometriosis New Zealand and the University of Canterbury.
The project is aimed at building a clearer picture of how endometriosis impacts people in New Zealand, including their experiences of awareness, diagnosis, treatment, work, education, finances and the healthcare system.
Across the wider research series, more than 6,500 survey responses have been completed, with more than 1,650 endometriosis patients signing up to participate in future research.
What is a National Endometriosis Action Plan?
A National Endometriosis Action Plan would be a coordinated national strategy to improve awareness, diagnosis, treatment, research and support for people with endometriosis in New Zealand.
Australia already has a National Action Plan for Endometriosis, launched in 2018. The Australian Government has committed around A$127 million, including A$37 million for 33 Endometriosis and Pelvic Pain Clinics, providing multidisciplinary support for people with endometriosis and chronic pelvic pain.
Endometriosis New Zealand strongly advocates for New Zealand to develop its own National Endometriosis Action Plan.
What would a National Endometriosis Action Plan do?
A National Endometriosis Action Plan would provide a nationally coordinated, government-backed programme to improve endometriosis awareness, diagnosis, treatment, care and research.
This would include better education for the public, schools and health professionals; clearer diagnostic and referral pathways; improved access to imaging, treatment and multidisciplinary care; targeted action to reduce inequities for Māori, Pasifika and rural communities; and more New Zealand-specific research and data.
The aim would be to reduce diagnostic delays, make care less dependent on postcode or ability to pay, and ensure people with endometriosis receive timely, consistent and effective support.