Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review

Pauline De Corte; Moritz Klinghardt; Sophia von Stockum; Klaas Heinemann

doi:10.1111/1471-0528.17973

Endometriosis · Diagnosis

Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review

De Corte P, Klinghardt M, von Stockum S, Heinemann K

Published January 2025 BJOG : an international journal of obstetrics and gynaecology

DOI 10.1111/1471-0528.17973 PMID 39373298 PMC PMC11625652

RRM Academy Synopsis

Endometriosis diagnosis took 5 to 12 years in studies since 2018

A review of 17 observational studies from Western high-income countries found that overall time to diagnosis for endometriosis ranged from 5 to 12 years. The studies were published since 2018.

Key Findings

The review screened 275 publications from PubMed and Embase and included 17 observational studies: 13 cross-sectional studies and 4 retrospective cohort studies.
Overall diagnosis time, from first symptoms to diagnosis by a physician, ranged from 5 to 12 years across the studies.
Primary diagnosis time, from first symptoms to the first related physician visit, ranged from 1 to 4 years.
Clinical diagnosis time, counted from the first physician visit until diagnosis, spanned 0.3 to 8.6 years.
Times differed within single countries: the United Kingdom's studies gave overall times of 5.5 to 8 years, and the United States' gave 5 to 8 years.

Interpretation

The authors conclude that most delay occurs on the physician's side, after a woman's first related visit. Clinical diagnosis time mattered more than time to that first visit. The authors note that most studies relied on online or postal surveys with self-reported diagnosis timing. The findings support further research to close this delay.

RRM Context

Restorative reproductive medicine looks for the root cause, and that work starts with a diagnosis. The review's authors say delay can worsen symptoms and delay effective treatment. Suppressive medications can quiet symptoms while disease progression continues unnamed. Excision is the surgical standard once endometriosis is found.

Our editorial summary of this paper, not the article's abstract.

Abstract

Background

Endometriosis diagnosis reportedly faces delays of up to 10 years. Despite growing awareness and improved guidelines, information on the current status is limited.

Objectives

To systematically assess the published evidence on the status of time to diagnosis in individuals with endometriosis, with respect to the definition of time to diagnosis, geographical location and patient characteristics.

Search Strategy

MEDLINE (via PubMed) and Embase were searched for publications reporting time to diagnosing endometriosis since 2018. No restrictions to population or comparators were applied. All publications were screened by two independent reviewers.

Selection Criteria

Search results were limited to primary publications of randomised controlled trials, non-randomised trials and observational studies. Case reports, secondary publications and grey literature were excluded. No restrictions were made regarding language, provided that an English title and abstract were available.

Data Collection and Analysis

Publications were assessed with respect to time to diagnosis, diagnostic methods, study type, study country and potential bias.

Main Results

The 17 publications eligible for inclusion in this literature review were all observational studies. The publications reported diagnosis times between 0.3 and 12 years, with variations depending on the definition of time to diagnosis (overall, primary, or clinical), geographical location and characteristics of the included study population. Evidence was of poor to good quality overall.

Conclusions

Diagnostic delay is still present, primarily driven by physicians, and this review underscores the need for standardised definitions, increased awareness and targeted diagnostic interventions.

Topics

Endometriosis › Diagnosis › Diagnostic Delay · General Gynecology › Clinical Practice › Practice Patterns · Research Methods › Evidence Synthesis › Systematic Reviews

Pauline De Corte, Moritz Klinghardt, Sophia von Stockum, Klaas Heinemann

P Corte, M Klinghardt, S Stockum, K Heinemann

PMID 39373298 39373298 DOI 10.1111/1471-0528.17973 10.1111/1471-0528.17973 De Corte et al. 2025, De Corte 2025

Correction published 2025

Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review

Endometriosis diagnosis took 5 to 12 years in studies since 2018

Key Findings

Interpretation

RRM Context

Abstract

Topics

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