Endometriosis crisis

2026-03-21 - 00:46

A recently established, regionally based, international network is advocating for more urgent official action to address the pervasive life-altering incidence of endometriosis (endo) in the Caribbean. T&T-born, Grenada-based activist and endo patient, Abeesha Toussaint, chose the month of March—Global Endometriosis Awareness Month—to launch the EndoPolicy Initiative (EPI). The EPI, Toussaint explained, is an attempt to harness global interest, research, advocacy, and action on the medical condition, which is estimated to affect between five per cent and ten per cent of all women and girls in T&T. The worldwide average is ten per cent. The World Health Organisation (WHO) describes endo as “a chronic disease” with symptoms including “severe pain during menstruation; heavy menstrual bleeding; chronic pelvic pain (pain that does not go away when the menstrual cycle ends); infertility; and abdominal bloating and nausea.” “Emerging research suggests that endometriosis is associated with immune system dysregulation. People with endometriosis have higher rates of other immune-mediated conditions, such as lupus, multiple sclerosis, and inflammatory bowel disease, and a family history of endometriosis,” the WHO says. However, Toussaint and her regional colleagues argue that the condition requires far more urgent attention than is currently being extended. They say the condition now constitutes a public health crisis. Speaking at the Healthy Mind Foundation’s International Women’s Day Conference and Exhibition on March 8, Health Minister Dr Lackram Bodoe, who is himself an obstetrician and gynaecologist, made no specific mention of the challenge, but described women’s health as “a cornerstone of national development.” One study published in 2024 entitled “A cross-sectional study on the quality of life of women with endometriosis in Trinidad and Tobago” urged “a holistic approach.” Led by Dr Raveed Khan of the University of the West Indies (UWI), the research team found significant quality-of-life impacts among women with endometriosis in the country. “Improving the quality of care requires a comprehensive understanding of the factors influencing quality of life, particularly pain severity and the need for a holistic approach to support individuals grappling with endometriosis,” the study says. The EPI is focusing on these elements of the condition. “Whilst organisations and advocates worldwide have worked tirelessly to improve outcomes for people living with endometriosis, their impact is often constrained by limited resources and minimal government support, highlighting the serious health inequities faced by this community,” Toussaint said. She pointed to the fact that in countries such as T&T, there are no national plans of action, “forcing advocates to fill voids left by underfunded nonprofits.” The former Trinidad & Tobago Endometriosis Association president added that while in Barbados, a formal adoption of a Strategic Action Plan for Endometriosis was developed and awaits formal adoption, T&T has not reached that far. “Much of the (regional) progress has been driven by the advocacy and work of endometriosis organisation,” Toussaint added. “However, in many countries where such organisations do not exist, endometriosis often remains largely absent from the government policy agenda.” She cited progress in countries such as Australia, which has a 2018 National Action Plan, backed by over $127 million for research, clinics, and education; the US National Institutes of Health, which doubled funding in recent years, and Ireland, which has rolled out a 2025 National Framework and a 2026 education programme called MISE. The EPI founder said the situation in the Caribbean is particularly urgent, not only because of the high estimated numbers, but also because of the incidence of misdiagnosis. “Misdiagnosis delays average seven to ten years,” she said, “and this is exacerbated by limited specialists, cultural stigma around menstrual pain, and stretched public health systems post-COVID.” “Women miss work, drop out of school, and face mental health strains, costing economies billions in lost productivity.” Advocates also point to a shortage of specialists trained in advanced endometriosis diagnosis and treatment in the Caribbean, meaning many patients must rely on general gynaecological care or seek treatment abroad. The EPI has correspondingly prescribed “National action plans recognising endometriosis as a public health priority, legislation-backed policies to improve access to diagnosis, treatment, and care, and dedicated funding for research, education and specialised clinics.” Alongside these, it contends, “training for health professionals and stakeholder engagement” is also of significant importance. By advocating for legislation, fostering policymaker buy-in, and building collaborations, Toussaint said EPI seeks to “influence policy and legislation, creating a supportive environment in which women and girls living with endometriosis can thrive and reducing the health inequities associated with the condition.” More information, including ways to make contact, is available on the organisation’s website: https://endopolicyinitiative.org/