A third of New Zealanders surveyed about their endometriosis care were advised by a medical practitioner that becoming pregnant would relieve their symptoms, new research has found.
The finding is contained in two reports published on Friday as part of Barriers and Facilitators of Endometriosis Care in Aotearoa New Zealand, a research project run by Endometriosis New Zealand and the University of Canterbury. More than 600 patients took part in this part of the study.
Endometriosis New Zealand chief executive Tanya Cooke said the pregnancy result was the most troubling of the findings.
“Pregnancy is not a treatment for endometriosis, and no medical practitioner should recommend that someone become pregnant simply to relieve their endometriosis symptoms,” Cooke said in a statement.
“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 That one-third of participants in the study had received this advice shows that an outdated understanding of endometriosis remains in our health system.”
The study authors wrote that pregnancy does not reduce the size or number of endometriosis lesions, and that “such a suggestion is incredibly inappropriate and intimidating for patients, who may experience this suggestion at very young ages”. They also reported that among study participants who had been pregnant, symptoms were reduced in only 51.3 percent of cases, while pregnancy for endometriosis patients carries a raised risk of obstetric complications including pre-term birth, pre-eclampsia and haemorrhage.
The reports also confirmed a figure that has become the defining statistic of endometriosis care in this country. Patients waited a median of 10 years from the onset of symptoms to a diagnosis. Within that decade, people spent four years before first raising their symptoms with a doctor, then a further six years before the condition was identified.
That split matters, because it points at two separate problems. The first four years are a public awareness problem, in which people do not recognise that what they are experiencing is unusual. Earlier findings from the same research project, released in June, showed 47 percent of participants had never heard of endometriosis when their symptoms began, and that those people faced a median delay of 11 years compared with nine years for those who had. The remaining six years sit inside the health system itself.
Painful periods, fatigue and lower back pain were the symptoms participants reported most often. While 86 percent had been advised by a doctor to use over the counter pain relief such as paracetamol, only about a quarter found those medications effective. The reports also looked at complementary and alternative therapies, and found no individual therapy was rated effective by more than 70 percent of the people who had tried it.
“This shows how difficult symptom management can be for people living with endometriosis,” Cooke said. “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.”
One of the more striking results concerns surgery. One in eight participants had a laparoscopy in which no endometriosis was found, only for the disease to be identified in a later operation. That means at least two surgeries, two recoveries and more time without an explanation.
“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 said.
For more than half of participants, the main emotion on being diagnosed was relief, which the researchers read as a measure of how long people had gone without being believed.
Lead researcher Katherine Ellis, a PhD candidate at the University of Canterbury, said a diagnosis is not the end of the difficulty.
“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 said.
“The experiences described in this research demonstrate why patients must be listened to, properly informed and actively involved in decisions about their care.”
Ellis said general practitioners, practice nurses and other primary health professionals need the training, support and resources to recognise possible endometriosis, investigate symptoms properly, provide effective initial management and refer patients on when specialist care is needed. Both she and Cooke framed the results as an argument for education rather than blame, on the basis that a condition affecting roughly 120,000 New Zealanders is turning up in general practice constantly whether or not clinicians have been trained to spot it.
Endometriosis New Zealand is using the findings to press its case for a National Endometriosis Action Plan, an ask it put to every political party in a manifesto released in June ahead of this year’s general election. The organisation points to Australia, which launched the world’s first national action plan for endometriosis in 2018 and has since funded 33 endometriosis and pelvic pain clinics, publicly funded MRI scans and training for GPs and nurses, at a cost of roughly 95 million New Zealand dollars. New Zealand has no dedicated endometriosis clinics.
The economic argument runs the same way. Endometriosis New Zealand says the national burden of the condition runs into billions of dollars a year, most of it through lost productivity rather than direct treatment costs, which is the pattern found in cost of illness studies overseas. On those numbers the cost of a plan is small next to the cost of not having one, and much of the spending would go on the cheapest interventions in the whole list, which are awareness and GP training.
The full report, The Impacts of Diagnosis and Treatments on Endometriosis Journeys, is available from Endometriosis New Zealand. The findings were first reported by RNZ.
Have you or someone you know waited years for an endometriosis diagnosis? Tell us what your experience of the health system was like in the comments below.
This article was written by AI, briefed to report the facts, hopefully without some of the bias people bring to the job 🙂
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