Women with endometriosis or adenomyosis face 10- to 11-year diagnostic delays, study finds

Women in France with endometriosis or adenomyosis experienced an average diagnostic delay of a decade or more, according to a large prospective e-cohort study published in the Journal of Women’s Health in February 2026. The findings identified multiple clinical and sociodemographic factors associated with prolonged time to diagnosis and provided insight into patient profiles that may be at risk for delayed care.

Endometriosis is a chronic inflammatory disease characterized by endometrium-like tissue outside the uterus and is estimated to affect 10% of reproductive-age women worldwide. It has traditionally been classified into 4 surgical stages, from minimal to severe disease. Pelvic endometriosis may present as superficial peritoneal lesions, ovarian endometrioma, or deep infiltrating disease. Adenomyosis, defined by endometrium-like tissue within the myometrium, has been described as a distinct condition, although it frequently co-occurred with endometriosis.

Despite debilitating symptoms and substantial effects on quality of life, diagnosis has historically remained difficult, noted the study authors. Although laparoscopy had long been considered the gold standard for diagnosis, European recommendations had shifted toward prioritizing imaging combined with clinical examination and patient history as a less invasive approach. Previous studies had reported diagnostic delays ranging from fewer than 4 years to more than 13 years across different settings, but many were limited by small sample sizes or a focus on surgically treated cases. Data on adenomyosis diagnostic delay had been particularly limited.

To address these gaps, investigators analyzed data from the Community of Patients for Research (ComPaRe)-Endometriosis, a prospective e-cohort of women in France with self-reported endometriosis and/or adenomyosis. The study included approximately 6,950 participants. Linear regression modeling was used to evaluate factors associated with diagnostic delay after adjusting for age, education level, body mass index, number of comorbidities, and family history of the disease or chronic pelvic pain.

The average diagnostic delay was 10 years for endometriosis and 11 years for adenomyosis.

Several factors were independently associated with longer delays. A more recent year of diagnosis was associated with a 0.34-year increase in delay (P < 0.0001). Unemployment was associated with an additional 0.7 years (P = 0.01), and each additional comorbidity was linked to a 0.3-year increase (P < 0.0001). A family history of endometriosis or chronic pelvic pain was associated with a 1.1-year longer delay (P < 0.0001).

Symptom-related characteristics were also associated with prolonged time to diagnosis. Severe dysmenorrhea before diagnosis, measured using a numeric rating scale, was associated with an additional 0.8 years (P < 0.0001). Consulting a higher number of health professionals before diagnosis was associated with a 0.3-year increase per provider (P < 0.0001). Presenting with multiple symptoms at the first consultation was associated with a 1.6-year longer delay (P < 0.0001).

In contrast, several factors were associated with shorter diagnostic delay. Women who perceived their financial position as comfortable experienced a 1.4-year shorter delay (P < 0.0001). Older age at menarche was associated with a 0.6-year reduction (P < 0.0001), and older age at first symptoms was associated with a 0.8-year shorter delay (P < 0.0001).

The authors concluded that diagnostic delay for both endometriosis and adenomyosis remained substantial and was influenced by a combination of socioeconomic and clinical factors. Greater awareness of patient profiles associated with prolonged delay could help inform clinical practice and public health strategies aimed at reducing time to diagnosis and improving disease management.

“Overall, an unfavorable socioeconomic situation, a higher number of comorbidities, higher pre-diagnosis pain levels, or a family history of endometriosis, adenomyosis, or CPP, were associated with a longer diagnostic delay, while a low education level, older age at menarche, and older age at first symptoms were associated with a shorter delay,” concluded the investigators.

Reference:

Endometriosis Diagnostic Delay and Its Correlates: Results from the ComPaRe-Endometriosis Cohort. J Womens Health. 2026. Jan;35(2):172-188. doi:10.1177/15409996251380129.