Bioethics Forum Essay
Updated Endometriosis Guidelines: A Step Forward in Ethical Reproductive Healthcare
New clinical guidelines for the diagnosis of endometriosis are welcome news. The guidelines, recently issued by the American College of Obstetricians and Gynecologists (ACOG), recommend that physicians treat patients as “partners and experts about their own bodies,” aligning with reproductive justice imperatives long overdue in the care of people with this common condition.
Endometriosis and other reproductive-related conditions have largely been overlooked in reproductive ethics, which tends to focus on reproductive technologies, family planning, and policies that govern them. Understanding the lived experiences of people with endometriosis is important for elucidating the barriers to improved care and the tensions in current care management. This also supports recent work that expands the reproductive ethics canon by integrating attention to anti-racism, intersectionality, and health justice frameworks that validate the knowledge and experiences of those most impacted by reproductive inequities.
Endometriosis is an estrogen-dependent disease in which tissue similar to the lining of the uterus grows elsewhere in the body. It impacts roughly 10% of people with female reproductive organs globally. Symptoms include heavy periods, gastrointestinal issues, generalized pain, back pain, and nausea, as well as acute pain during menstruation, ovulation, bowel movements, and penetrative sex, often resulting in a significant negative impact on individuals’ health and quality of life. And yet when patients go to doctors seeking help, they often find that their symptoms and concerns are dismissed.
The new clinical guidelines state that patients’ complaints of chronic pelvic pain should be taken seriously, emphasizing that clinicians can rely on a symptom-based assessment to make a presumptive diagnosis and initiate treatment. Previous guidelines required a surgical biopsy to confirm the diagnosis. The new guidelines aim to expedite the diagnostic process, which often takes upward of 10 years. Delayed diagnosis is particularly common for minoritized groups, individuals who are especially vulnerable to injury, violence, and being dismissed in healthcare settings.
This shift toward symptom-based diagnosis does not eliminate the variability in how those symptoms are recognized and acted upon. Receiving an endometriosis diagnosis still largely hinges on an individual provider’s knowledge and ability to recognize and validate patient-reported symptoms. ACOG expands the use of imaging modalities, such as ultrasound and MRI, to detect endometrial tissue, or lesions. But the absence of observable lesions in imaging does not rule out endometriosis since small lesions may be unobservable. And clean scans have historically been used to dismiss patients’ symptoms. Unless this changes, patients may continue to face delays and uncertainty in their diagnosis, despite the updated recommendations.
ACOG’s new guidelines mark an encouraging step forward in the clinical approach to endometriosis, but they do not address the structural barriers that delay timely diagnosis and comprehensive management. Despite being one of the more common gynecologic conditions with significant health impacts, endometriosis remains poorly understood, including its potential risk factors, underlying causes, and reasons for its diverse presentations and impact. These gaps reflect a longstanding trend of limited research funding and inadequate prioritization of endometriosis research. Notably, a recent National Academies report emphasized the need for the National Institutes of Health and other federal research agencies to strengthen their research efforts to better understand chronic conditions in women. The report underscores several key conditions, including endometriosis and pelvic floor disorders.
Broader social change and improvements in medical training are required, particularly within reproductive health. Severe menstrual pain, dyspareunia, and related symptoms are often dismissed in both social and clinical contexts, shaped in part by stigma and limited discourse and education around menstrual and sexual health. The persistence of this taboo further suppresses open discussion, contributing to delayed recognition by both patients and clinicians.
Clinicians need more training to recognize the symptoms of endometriosis, particularly when diagnostic findings are inconclusive. Inconsistent training in symptom recognition and disease presentation contributes to missed or delayed diagnoses, which puts patients’ health at risk and erodes patients’ confidence in research and clinical care.
Faster diagnostic pathways alone do little to expand the limited range of treatment options for endometriosis. First-line treatments, typically hormonal contraception, may be ineffective or short-lasting or may have mental and physical side effects that lead patients to discontinue use. Many patients, feeling that their concerns are not being heard by their providers, end up trying to manage their pain on their own. Surgical excision of endometrial lesions, which remains the only definitive way to diagnose endometriosis under the 2026 guidelines, does not consistently resolve symptoms, Recurrence and persistent pain are common, and access to experienced surgeons remains limited.
Contemporary reproductive ethics frameworks demand that we move beyond narrow questions of fertility and reproductive capacity to affirm the right to bodily autonomy, symptom recognition, and relief from chronic pain. This was one of the main takeaways from the 10th Annual Reproductive Ethics Conference last month. For people living with endometriosis, earlier diagnosis is not enough; without corresponding improvements in treatment, earlier diagnosis will continue to fall short of achieving health justice.
Opinions, conclusions, and recommendations expressed in this essay are those of the authors and do not represent the views of their respective institutions.
Melanie Jeske, PhD, MS, is an assistant professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She is principal investigator of the Entanglements of Endometriosis research study, which examines how people navigate living with endometriosis, and how researchers and clinicians produce knowledge about and care for patients living with the condition.
Heather Welty, MA, is a clinical research associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine.
Meghan Larson, BS, GCert, is a first-year medical student at the Texas College of Osteopathic Medicine.
Sophie L Schott, BA, GCert, is a third-year medical student in Houston, Texas. @MyBestSchott
Faith E. Fletcher, PhD, MA, is an associate professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She is also a Hastings Center Fellow and a Greenwall Bioethics Faculty Scholar. @FaithEFletcher
