Updated guidance shows unmet needs in endometriosis care - EMJ

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Updated guidance highlights unmet needs in endometriosis care

endometriosis

NEW international guidance has highlighted persistent gaps in the diagnosis, management, and long-term support of people living with endometriosis, calling for earlier recognition and more integrated reproductive healthcare pathways.

Endometriosis remains underdiagnosed

Endometriosis is a chronic inflammatory condition affecting an estimated one in ten women of reproductive age. It is characterised by endometrial-like tissue growing outside the uterus, leading to pelvic pain, dysmenorrhoea, dyspareunia, and infertility. Despite its prevalence, diagnosis is often delayed by several years, with many patients reporting repeated healthcare visits before receiving appropriate evaluation.

The updated guidance emphasised that delayed diagnosis contributes to prolonged pain, reduced quality of life, and avoidable impacts on fertility and mental health.

Key recommendations for clinical practice

The guidance underscored the importance of recognising endometriosis based on symptoms rather than relying solely on surgical confirmation. Early assessment in primary care, followed by timely referral when symptoms persist or worsen, was identified as a priority.

Multidisciplinary management was highlighted as essential, integrating gynaecology, pain management, mental health support, and fertility counselling where appropriate. The recommendations also stressed that treatment plans should be individualised and revisited over time, particularly as reproductive goals change.

Fertility and reproductive considerations

Endometriosis can negatively affect fertility through inflammation, altered pelvic anatomy, and impaired ovarian function. The guidance encouraged proactive discussion of fertility preservation and reproductive planning, especially for patients with moderate to severe disease or those undergoing repeated surgical interventions.

Improved communication around reproductive options was identified as a key unmet need, with clinicians encouraged to provide clear, timely information to support informed decision-making.

Addressing stigma and health system barriers

Beyond clinical management, the guidance highlighted the broader social and systemic challenges faced by patients with endometriosis. Normalisation of menstrual pain, limited awareness among healthcare professionals, and fragmented care pathways were identified as contributors to underdiagnosis and suboptimal care.

The authors called for enhanced education across healthcare systems and public health initiatives to improve awareness of endometriosis as a serious reproductive health condition.

Implications for reproductive health services

By promoting earlier recognition and coordinated care, the guidance aimed to improve long-term outcomes for people with endometriosis. The recommendations align with broader reproductive health priorities outlined by the World Health Organization, which has emphasised equitable access to diagnosis and care for chronic reproductive conditions.

Reference

WHO. Endometriosis: key facts and updated care considerations. 2026.
Available at: https://www.who.int/news-room/fact-sheets/detail/endometriosis. Last accessed: 19 January 2026.

 

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