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Rethinking Endometriosis Care: From Early Diagnosis to Patient-Centered Strategies

Clinicians and patient advocates gathered for a session dedicated to endometriosis
09/20/2025

New York, NY — At the 2025 Women’s Health Annual Visit (WHAV), clinicians and patient advocates gathered for a session dedicated to one of the most pervasive yet often underdiagnosed gynecologic conditions: endometriosis. Led by Dr. Sandra Madueke-Laveaux (University of Chicago Medicine), Dr. Linda Bradley (Cleveland Clinic), and patient advocate Lauren Kornegay (Endo Black, Inc.), the discussion highlighted the urgent need for earlier recognition, modernized management strategies, and more equitable care models.

The Burden of Diagnostic Delay

Dr. Sandra Madueke-Laveaux emphasized that endometriosis affects an estimated 6–10% of reproductive-age women, yet the average diagnosis can take nearly a decade. During this time, patients face worsening pain, disease progression, and increasing surgical complexity. She explained that delays are driven by normalization of symptoms, misdiagnosis as gastrointestinal or urinary conditions, and gaps in provider knowledge.

The impact extends beyond physical health. Delayed diagnosis leads to reduced quality of life, interruptions in school and work, strain on personal relationships, and heightened risks of anxiety, depression, and financial hardship. Dr. Madueke-Laveaux urged providers to reframe endometriosis as a chronic, systemic inflammatory condition—one that can be recognized through patient history, careful examination, and evolving imaging techniques, rather than by surgery alone.

Expanding the Treatment Toolbox: GnRH Antagonists

Dr. Linda Bradley reviewed the evolution of medical management, highlighting the promise of oral GnRH antagonists such as relugolix. Unlike older injectable agonists, these oral agents provide rapid, reversible suppression of estrogen, with fewer side effects when combined with add-back therapy.

Clinical trials, including the SPIRIT program, demonstrated meaningful reductions in dysmenorrhea, non-menstrual pelvic pain, and dyspareunia among women receiving relugolix combination therapy compared with placebo. Many participants also decreased or eliminated their reliance on opioids and NSAIDs.

Dr. Bradley noted that patient selection is key. Therapy is most suitable for reproductive-age women with moderate-to-severe pain who may be awaiting surgery, recovering from incomplete excision, or managing recurrence. To protect bone health, calcium and vitamin D supplementation is recommended.

Surgery Reconsidered

Historically, laparoscopy has been considered the gold standard for diagnosis and treatment. Dr. Madueke-Laveaux questioned this default surgical mindset, pointing out that many patients undergo multiple procedures with limited long-term benefit. Recurrence is common, adhesions complicate future interventions, and improvements in quality of life are not guaranteed.

Instead, she advocated for a “medical-first, multidisciplinary” approach. This model integrates pharmacologic therapy, pain management, nutrition, physical therapy, and mental health support—reserving surgery for carefully selected cases aligned with patient goals.

Centering Patient Voices: Equity and Representation

Adding a lived-experience perspective, Lauren Kornegay shared her journey of misdiagnosis, emergency surgeries, and isolation before founding Endo Black, Inc., a nonprofit focused on supporting Black women with endometriosis. She underscored how racial bias and outdated myths—such as the belief that endometriosis is a “white woman’s disease”—compound diagnostic delays and undermine trust in healthcare.

Her message to providers was clear: shared decision-making, active listening, and validation are not just good clinical practices—they are essential for patient well-being. Representation in data, resources, and care models is central to achieving equitable outcomes.

Confronting Bias in Endometriosis Care

Dr. Bradley closed with a call to directly address systemic disparities. She reminded attendees that every woman’s pain deserves to be believed and investigated, regardless of race, socioeconomic status, or appearance. Communication strategies—such as affirming that “your pain is real and deserves investigation”—can counteract years of dismissal. She emphasized that providers and institutions should strengthen bias training and improve access to high-quality care for underserved groups.

Key Takeaways

  • Early recognition matters: Diagnostic delays average nearly 10 years, worsening both physical and psychosocial outcomes.

  • Medical-first approaches are rising: Oral GnRH antagonists provide effective pain relief with improved tolerability.

  • Surgery should be selective: Laparoscopy has a role but should not be the automatic first step.

  • Equity is essential: Bias, dismissal, and underrepresentation continue to harm patients, particularly women of color.

  • Patient voices lead the way: Shared decision-making and trust-building can transform care experiences.

This session ultimately underscored a paradigm shift in endometriosis management—balancing innovation in medical therapies with compassion, inclusivity, and patient-centered care.

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