De Corte, P., Klinghardt, M., von Stockum, S., & Heinemann, K. (2025). Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review. BJOG : an international journal of obstetrics and gynaecology. https://doi.org/10.1111/1471-0528.17973
De Corte P, Klinghardt M, von Stockum S, Heinemann K. Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review. BJOG : an international journal of obstetrics and gynaecology. 2025. doi:10.1111/1471-0528.17973
De Corte, Pauline, et al. "Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review." BJOG : an international journal of obstetrics and gynaecology, 2025.
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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. Times varied with how each study defined the delay.
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 review reports ranges and no pooled average. All 17 studies were observational. Most studies used online or postal surveys with self-reported diagnoses, which the authors say can introduce selection bias. Where reported, participants were mostly white, highly educated women aged 30 or older. Study quality ranged from poor to fair for cross-sectional designs and fair to good for cohort designs. Subgroup differences, such as by weight or race, each came from single studies. The authors conclude that longer delays typically occur on the physician's side, and say clinical diagnosis times are more significant than primary ones.
RRM Context
Restorative reproductive medicine looks for the root cause, and that work starts with a diagnosis. The review's authors say delay can potentially 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.
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