Some days are good, and some days are not; that is the unpredictable journey of endometriosis, a condition that deserves understanding and awareness. It is a chronic, systemic, inflammatory disease affecting up to 10% of women of reproductive age globally (~ 190 million). Those living with endometriosis often experience diagnostic delays and inadequate care pathways, leading to systemic neglect. The impact is profound, extending beyond physical health to emotional, social, and economic dimensions. The economic burden of the disease is substantial, with an estimated annual loss of billions of dollars due to reduced productivity and increased healthcare costs.
Endometriosis is characterized by the presence of endometrial tissue outside the uterine cavity, contributing to inflammation, fibrosis, and adhesion, with symptoms ranging from dysmenorrhea to infertility, dyspareunia, persistent pelvic pain, gastrointestinal distress, microbial dysbiosis, and extreme fatigue. Additionally, living with chronic pain has psychological effects. The complexity comes partly from its multifactorial origins, involving hormonal imbalance, immune dysregulation, genetic predisposition, lifestyle, and environmental factors. Recent research considers endometriosis a systemic condition and requires a broader clinical framework. Despite the prevalence and severity, endometriosis remains underrecognized and under-prioritized. According to the WHO, early diagnosis and effective treatment are limited in many settings, particularly in low and middle-income countries. Women in these regions are up to 40% less likely to receive appropriate care, and the diagnosis takes significantly longer than the global average. This disparity directly leads to differing health outcomes and reinforces the global 'women’s health gap.'
Everyday Experience of Living with Endometriosis
With endometriosis, daily life is often shaped by unpredictable and debilitating manifestations of multiple symptoms disrupting social attendance, productivity, relationships, and mental health. Chronic inflammation remains the hallmark of disease onset and progression. Women with endometriosis face an increased risk of various comorbidities, including autoimmune and atopic disorders, thyroid and cardiovascular diseases, as well as a heightened risk of ovarian and breast cancers. Many experience comorbid anxiety and depression, reflective of the cumulative burden of chronic pain and medical uncertainty. The emotional landscape becomes more significant when feeling dismissed, disbelieved, or minimized, often stemming from medical gaslighting and implicit gender bias. Thus, it is important to understand this lived reality, as advocacy begins with prioritizing the voices of patients.
The Diagnostic Odyssey
The primary issue in endometriosis care is the long diagnostic delay, ranging from 5 to 12 years on average, with younger adults facing longer waits. Despite improved imaging technologies and promising biomarkers, these innovations have not yet translated into routine clinical use and a definitive diagnosis often requires invasive laparoscopic surgery. Contributors to diagnostic delay include patient-related factors, such as normalization of severe menstrual pain, provider-related factors, such as misdiagnosis and dependence on non-specific diagnostic tests, as well as systemic issues, including inadequate referral pathways and geographic barriers. Studies also document profound global disparities reflecting structural inequities. Reducing diagnostic delay requires shifting from surgical confirmation to clinical diagnosis, a recommendation echoed by experts across Asia Pacific and Europe. For this shift to be successful, regulatory bodies need to endorse clinical diagnosis protocols. Additionally, insurance providers should adapt their policies to cover clinical diagnostic procedures. Such endorsements could significantly shorten the adoption timeline and facilitate broader acceptance across healthcare systems.
Need for Harmonization in Care Guidelines
Clinical guidance for endometriosis care varies widely around the world, with more than 25% of countries lacking publicly accessible guidelines. Even in countries with national guidelines, there are inconsistencies in diagnostic criteria, imaging recommendations, surgical protocols, pain management, and fertility treatment. This leads to unequal quality of care and highlights the need for evidence-based, culturally informed, and accessible guidance. Research shows that multidisciplinary care models involving gynaecologists, pain specialists, psychologists, fertility experts, and physical therapists improve symptom management and quality of life. However, many regions lack the necessary infrastructure for integrated care, indicating a significant opportunity for policy intervention.
National Plans
Countries are recognizing endometriosis as a major public health issue that requires national attention. According to the recent study, 48 countries have included endometriosis on their political agendas, 36 have started policy discussions, 12 have proposed national strategies, and only four have fully implemented a national strategy. Australia’s National Action Plan for Endometriosis (NAPE) is a leading model, focusing on awareness, research funding, clinical management, and advocacy by people with lived experience. However, significant global inequities persist, especially in low- and middle-income countries, where structured care pathways are often lacking. Endometriosis is increasingly seen as a matter of gender equity and economic justice. Successful collaborative efforts in global health, such as the WHO's partnerships, could serve as models for advancing endometriosis advocacy and policy development.
A Call for Change
Endometriosis is a complex condition with urgent needs. Individuals deserve early diagnosis, equitable care, and scientifically-supported treatments. As research progresses, policies and practices must adapt accordingly. Standardized clinical guidelines and supported national action plans are essential, and empathy should guide all interactions. Collaboration is crucial for improving endometriosis care among scientists, clinicians, policymakers, and healthcare systems. Meaningful change is possible through science, compassion, and advocacy. To drive change, the focus should be on increasing funding for research in women's health conditions, establishing mandatory national guidelines for diagnosing and managing endometriosis, and implementing education programs to reduce stigma and promote early detection. The good news is that growing scientific insight and international advocacy efforts are paving the way for a much-needed shift in how the disease is understood and addressed.