Eleven Years of Cyclical Pain Before a Diagnosis of Endometriosis: A Narrative Review of Where the Delay Accrues and Whether It Is Shortening
DOI:
https://doi.org/10.5281/zenodo.22237612Keywords:
Endometriosis, Diagnostic Delay, Chronic Pelvic Pain, Referral Pathways, Evidence HeterogeneityAbstract
Endometriosis takes years to name, and the figure most often quoted for how many years is unstable. Reported averages range
from under two to over twelve, and the range is not noise: it reflects who was asked, how the interval was defined, and when the
study was done.
Objectives: To review the published evidence on diagnostic delay in endometriosis: how long it is, which segment of the pathway
accounts for most of it, why estimates differ so widely between studies, and whether the delay is shortening.
Material and Methods: Narrative review of systematic reviews, scoping reviews, multicentre chart-and-questionnaire studies,
national surveys and multi-country cohorts indexed in PubMed and the major obstetric, gynaecology and pain journals. No new
patient data were generated; every estimate quoted is one published by the original investigators.
Results: A systematic review found overall mean time to diagnosis ranging from 5.4 to 11.4 years and median from 5 to 12 years.
A scoping review reported an average of 6.6 years with a range of 1.5 to 11.3, and located the longest single segment between
gynaecology referral and diagnosis (2.8 years), followed by primary care presentation to diagnosis (2.5 years) and symptom
onset to primary care presentation (2.0 years). In a Dutch multicentre study of 837 respondents, median total delay was 7 years,
of which patient delay was 1 year, general practitioner delay 1 year and gynaecologist delay under 1 year.
Conclusion: Most of the delay accrues after the patient has presented, and the largest single segment sits after specialist referral,
which locates the problem inside secondary care rather than in women failing to seek help. There is evidence the interval is
shortening, and quoting the largest published figure without its denominator misrepresents current practice.
Abbreviations: CPP – Chronic Pelvic Pain, DALY – Disability-Adjusted Life Year, GP – General Practitioner, IQR –
Interquartile Range, SD – Standard Deviation, WERF – World Endometriosis Research Foundation.
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