EndoCost Aotearoa New Zealand: a Cross-sectional Survey of Chronic Pelvic Pain and Endometriosis

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.

Understanding diagnostic delay for endometriosis: a scoping review

“…Almost a third of studies (8/22) were published relatively recently (since 2020) from a range of countries. Fifteen were conducted in high income countries including the UK (15,16), US (17-21), Netherlands (22,23), Norway (24,25), Canada (26), Australia (27), New Zealand (28), and Italy (29). Three were conducted in middle income countries; Brazil (30,31) and Iran (32) and four were conducted in multiple countries (33)(34)(35)(36).…”

“…The mean age at onset of endometriosis symptoms was 14.1 years old for adolescents (range 13-15.3 years), and 20.4 years old for adults (range 20-23.2 years). The average age at diagnosis was 16 for adolescents and 28.8 for adults (range [22][23][24][25][26][27][28][29][30][31][32]. Average age of first GP visit was 14 for adolescents and 25.8 years for adults (range 20-32.6).…”

Cut‐off scores of the Depression Anxiety Stress Scale‐8: Implications for improving the management of chronic pain

“…Chronic pelvic pain (CPP) is pain in the pelvis, which persists for more than three consecutive months, and it is unrelated to cancer, intercourse or menstruation Bruckenthal, 2011). CPP prevails globally in up to 26.6% of reproductive-age women (Tewhaiti-Smith et al, 2022). It has a lifetime occurrence of 33% (Bruckenthal, 2011).…”

“…abdominal myofascial dysfunction) and endocrine (e.g. induced by endocrine-disrupting chemicals such as phthalates) (Huntington & Gilmour, 2005;Phan et al, 2021;Terzoni et al, 2023;Tewhaiti-Smith et al, 2022;Yang et al, 2017). It takes a relatively long time (up to 10 years) to get these conditions reported and diagnosed (Huntington & Gilmour, 2005;Tewhaiti-Smith et al, 2022).…”

“…Alternatively, they seek assistance from gynaecologists, primary care physicians and urologists (Bruckenthal, 2011). Both CPP and related conditions exert significant negative impact on social, academic and sexual/romantic relationships (Armour et al, 2020;Tewhaiti-Smith et al, 2022). Different aspects of patients' health can be seriously affected, with more than 52% of women expressing poor sleep and limited ability to move or do simple daily activities (Dysvik et al, 2013;Gökyıldız & Beji, 2012).…”