Endometriosis care needs a comprehensive approach

The launch of a multidisciplinary care model, EndoCare India, by the Indian Council of Medical Research (ICMR) marks a significant step towards improving treatment and management of endometriosis in Indian public healthcare settings. This integrated model promises to address the complex medical, psychological and social needs of patients across different life stages, from adolescence to menopause. It bridges the gap in care for an estimated 40-million Indian women and girls, many of whom suffer from this debilitating condition silently.

Endometriosis occurs when endometrial-like tissue grows outside the uterus, leading to inflammation, cysts, and adhesions. These changes cause severe pelvic pain, infertility, and bowel and bladder issues, disrupting daily life, work, and relationships. Women often suffer in silence due to lack of awareness and normalisation of menstrual pain. Misinformation, coupled with the widespread belief that period pain is “normal”, contributes to the significant diagnostic delays, medical dismissal and psychological distress experienced by patients. In India, cultural stigma compounds this, with many women delaying care until symptoms become unbearable.

A stakeholder consultation, “Tackling endometriosis together to improve women’s lives”, organised by the George Institute for Global Health in February last year, shed light on the profound impact of helplessness, anxiety, and depression among women and their partners. The event drew on qualitative findings from patient interviews across India, revealing how untreated endometriosis erodes economic productivity — women miss work, face career setbacks, or struggle with family planning. It informed a policy brief from the George Institute, called for comprehensive strategies to address endometriosis holistically through policy changes for s better access to care, increased research funding, and enhanced public education campaigns. This aligns with global calls, like those from the World Health Organization, to treat endometriosis as a chronic disease requiring urgent public health action. Early diagnosis and referral to specialised care can significantly enhance the quality of life for women living with endometriosis, with symptoms often going undiagnosed for seven to 10 years.

EndoCare India’s multidisciplinary approach integrates gynaecologists, pain specialists, psychologists, and fertility experts under one roof, tailored for public sector scalability. Piloted in select ICMR sites, it could reduce infertility rates (affecting 30-50% of cases) and mental health burdens by offering holistic care. Yet a standardised screening guideline for frontline healthcare workers and health providers in primary care settings will empower them to recognise symptoms and refer patients to higher health facilities in a timely manner, reducing delays in diagnosis and treatment.

The model’s success hinges on implementation. The States such as Maharashtra and Tamil Nadu, with strong public health networks, can lead rollouts, training frontline health workers, and health providers in primary care settings via modules on symptom recognition. Digital tools, such as the ICMR’s telehealth platforms, could link primary health centres to EndoCare hubs, ensuring follow-up for rural patients.

Public health response

The introduction of EndoCare India is a step in the right direction, but it must be complemented with greater recognition of endometriosis as a public health concern, dedicated resources for research on endometriosis, raising awareness in the community, and developing robust screening and referral system. The National Health Mission could integrate endometriosis into RMNCH+A programs, funding awareness via ASHA-led campaigns and school curricula. Research priorities should include cost-effective diagnostics, such as ultrasound protocols, and behavioural interventions to combat stigma.

Preety R. Rajbangshi is a senior research fellow and Sarah Suwasrawala is a research fellow on women’s health at the George Institute for Global Health India.