An Aotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and chronic pelvic pain

Abstract

Chronic pelvic pain (CPP) causes important negative effects on quality of life. Endometriosis is the most common cause of CPP in females, and diagnostic delay is over six years internationally. Data remain scarce for CPP impact or diagnostic delay in Aotearoa New Zealand. This study used an online survey to explore the impact of CPP on various life domains for those aged over 18. Additionally, for those with an endometriosis diagnosis, diagnostic delay and factors affecting this over time were explored. There were 800 respondent (620 with self-reported endometriosis). CPP symptoms, irrespective of final diagnosis, started prior to age 20 and negatively impacted multiple life domains including employment, education, and relationships. Mean diagnostic delay for those with endometriosis was 8.7 years, including 2.9 years between symptom onset and first presentation and 5.8 years between first presentation and diagnosis. Five doctors on average were seen prior to diagnosis. However, there was a reduction in the interval between first presentation and diagnosis over time, from 8.4 years for those presenting before 2005, to two years for those presenting after 2012. While diagnostic delay is decreasing, CPP, irrespective of aetiology, continues to have a significant negative impact on the lives of those affected.

The experiences of endometriosis patients with diagnosis and treatment in New Zealand

“…The average delay was shorter, 4.6 years, for participants with working diagnoses, with a standard deviation of 2.1 years, a maximum of 8 years, and a minimum of 2 years ( Figure 2 ). The average delay of 8.6 years for a confirmed diagnosis, is not statistically significantly different to the delay to diagnosis of 8.7 years reported in a 2022 Aotearoa New Zealand survey study which included 620 endometriosis patients ( 24 ).…”

“…Endometriosis patients have more lost workdays than controls ( 27 ), and frequently use their sick leave for their chronic pain ( 28 ). In 2022 studies conducted in Australia and New Zealand, one in seven ( 29 ) and one in eight ( 24 ) endometriosis patients respectively, had lost their job as a result of their endometriosis condition. It was evident that for many patients within this study's cohort, the workplace was a difficult environment for them to experience endometriosis complications and symptoms.…”

“…These experiences took place both in the workplace and in schooling, creating a substantial hurdle to effective performance in both environments. In a 2022 New Zealand study published in Scientific Reports , 23.9% of endometriosis patients had given up on their studies because of their condition, 11.0% had changed their course of study, 53.1% had delayed their exams or assignments and 66.7% reported time lost from their education as a result of their pelvic pain ( 24 ). Many patients within this study's cohort were subjected to doubt by teachers and peers during their education who believed they must be exaggerating to gain the benefit of skipping school or assignments:…”

“…However, the danger of medicalization of these mental health struggles was highlighted by one patient (Confirmed, 36+, Parous) who was misdiagnosed with premenstrual dysphoric disorder instead of endometriosis: “The inclusion of [Premenstrual dysphoric disorder] on the [Diagnostic and Statistical Manual of Mental Disorder, Fifth Edition (2013)] is also incredibly problematic as it basically labels women with painful periods and other symptoms as having a mental health condition.” Endometriosis has impacts on all aspects of quality of life and wellbeing. In a 2022 New Zealand-based study, 77.3% of patients indicated their chronic pelvic pain had negatively impacted their social relationships ( 24 ). In this cohort, patients indicated their mental health was negatively impacted by the fear of recurrence and the disruptions to their social and sexual relationships:…”

“…Currently, there are no published studies that assess the perceptions and experiences of diagnosis and care of Māori cohorts experiencing endometriosis (mate kirikopu). In a 2022 study, 12.1% of the 620 patients identified as Māori ( 24 ) but the data was not separated for analysis from the overall cohort. Internationally, a trend has been observed of longer diagnostic delays for ethnic minorities ( 96 ) but it is not yet known whether this occurs in New Zealand.…”