OBJECTIVES: Endometriosis is a disabling, painful chronic disease that has a severe negative impact on women’s daily life activities, mental health, and sexual health. Although the condition is very common among women, the time from symptom onset to diagnosis is prolonged and can take between 4 and 10 years due, partly, to the lack of affordable, accurate, noninvasive diagnostic tools. This systematic literature review aimed to identify the barriers to timely diagnosis of endometriosis from the patient’s perspective.

METHODS: Qualitative studies reporting women’s journey to endometriosis diagnosis were systematically searched for in Embase, Medline, and Emcare (via Ovid) until June 2022 following PRISMA guidelines.

RESULTS: Out of 891 unique records identified, 16 met all the inclusion criteria. Evidence from the literature suggests that the first barrier to timely diagnosis from symptom onset begins with delaying seeking medical advice due to “normalization” of women’s own symptoms, fed by a profound lack of awareness of what is abnormal from women and clinicians alike. Women highlighted that the encounters with medical professionals have often left them feeling disbelieved, dismissed, and ignored, leading to mistrust and the erosion of the patient-clinician relationship. Such barriers seem to promote the delayed or missed diagnosis of endometriosis regardless of geography. Interestingly, the diagnosis of mental health-related conditions including anxiety or depression usually preceded the diagnosis of endometriosis; it is, however, unclear whether these comorbidities contributed further to delayed diagnosis or developed as a result of the untreated endometriosis.

CONCLUSIONS: The barriers described to timely diagnosis of endometriosis are similar among most patients. A strategy to address these challenges should include efforts to increase awareness of symptomology by clinicians and the general public to facilitate early recognition of endometriosis. A patient-centered approach that involves cooperation between disciplines, including gynecologists, sexologists, and psychotherapists, could significantly improve patients’ quality of life.