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.
Highlights
Chronic pelvic pain (CPP) causes important negative effects on quality of life
There is a paucity of prevalence data for CPP and endometriosis in Aotearoa New Zealand; older prevalence studies have reported a quarter of females in Aotearoa New Zealand experience some pelvic p ain[15]
Given the high prevalence of pelvic pain, understanding the factors contributing to diagnostic delay and symptom presentation in Aotearoa New Zealand is crucial to ameliorate the negative impact of CPP on individuals’ quality of life, and fits within the international agenda for endometriosis r esearch[22]
Summary
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. Given the high prevalence of pelvic pain, understanding the factors contributing to diagnostic delay and symptom presentation in Aotearoa New Zealand is crucial to ameliorate the negative impact of CPP on individuals’ quality of life, and fits within the international agenda for endometriosis r esearch[22]. Both diagnostic delay and the impact of CPP are likely to vary between countries based on cultural factors, health literacy and access to affordable medical c are[11]. It is anticipated this will provide information to inform national health strategies, similar to the ‘National Action Plan for Endometriosis’ that has been enacted in Australia[23]
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