The barriers and facilitators to the diagnosis of endometriosis in Aotearoa New Zealand : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Manawatū, New Zealand
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2022
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Massey University
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Endometriosis is a debilitating chronic gynaecological disease that affects approximately 10% of people who menstruate worldwide. In Aotearoa New Zealand, it is estimated that 130,000 women have endometriosis, representing approximately 1 in 10 women who menstruate (Endometriosis New Zealand, 2022a). Endometriosis is a difficult disease to diagnose and currently the only definitive way to diagnose it is via laparoscopic surgery. Unfortunately, the journey to receiving a diagnosis is characterised by lengthy delays with many women experiencing long periods of time between symptom onset and receiving a diagnosis of the disease. Internationally it is estimated the diagnostic delay is an average of over 8 years, while in Aotearoa New Zealand a recent study found that the delay is diagnosis was an average of 8.7 years (Endometriosis New Zealand 2022a; Tewhaiti-Smith et al., 2022). The diagnostic delay of endometriosis is well-documented and widely reported in a number of qualitative and quantitative in the endometriosis space, however, there is a paucity of research that examines the reasons for the delay and ways to combat it. The aim of this research was to identify and develop a better understanding of the barriers and facilitators to the diagnosis of endometriosis in Aotearoa New Zealand by exploring women's accounts of their journeys to diagnosis. This research utilised online surveys to explore women's journeys to receiving a diagnosis of endometriosis in Aotearoa New Zealand and the barriers and facilitators they encountered. A total of 135 women took part in this research and answered a series of multiple choice and open-ended qualitative questions. Thematic analysis revealed five themes – the healthcare encounter, symptom concealment, education, taking control: advocacy, and the role of support. Each of these themes identified several barriers and facilitators across the individual, medical and societal levels. The findings of this research highlight that, in Aotearoa New Zealand, women experience challenging and often lengthy journeys to diagnosis and contributed new and unique insights to the barriers and facilitators women encounter on their journey to diagnosis and contributes to the limited literature on endometriosis available in the context of Aotearoa New Zealand.