ACOG Issues First Comprehensive Clinical Guidance on Endometriosis
What the new guidance represents
The American College of Obstetricians & Gynecologists (ACOG) has released updated clinical guidelines that, for the first time, provide comprehensive recommendations for diagnosing endometriosis. This marks a notable shift in formal guidance aimed at improving recognition and management of a condition that affects a large number of people worldwide. The guidance also highlights non-clinical barriers to care, including racial and gender-identity bias, and stresses the need for collaborative, shared decision making between clinicians and patients.
Understanding the scale and nature of endometriosis
Prevalence and basic definition
According to the World Health Organization (WHO), about 190 million reproductive-age women globally have endometriosis. Endometriosis is an inflammatory condition in which tissue similar to the lining of the uterus grows outside the uterus, frequently involving pelvic organs such as the ovaries and fallopian tubes. The presence of this ectopic tissue can provoke chronic inflammation, pain, and a range of systemic symptoms that vary between individuals.
Why diagnosis has historically been difficult
Diagnosing endometriosis has long posed a challenge because its hallmark symptoms—pelvic pain related to menstrual cycles or sexual activity, chronic fatigue, nausea, and bowel symptoms such as constipation—are not unique to the condition. Those symptoms overlap with several other gynecologic and gastrointestinal disorders, including irritable bowel syndrome (IBS), ovarian cysts, and pelvic inflammatory disease (PID). This symptom overlap makes it difficult for clinicians to distinguish endometriosis from other conditions based on symptoms alone, contributing to diagnostic uncertainty and inconsistent clinical approaches.
High rates of misdiagnosis and delayed diagnosis
Extent of misdiagnosis and its consequences
Past research indicates that as many as 75% of endometriosis cases are initially misdiagnosed as other physical health or mental health issues. Misattribution of symptoms can lead to repeated consultations, ineffective treatments, and prolonged suffering. Delayed diagnosis—sometimes spanning years—can permit disease progression and reduce quality of life for patients who continue to experience pain, fatigue, and other debilitating symptoms without definitive management.
Clinical perspective on diagnostic delay
Bliss Kaneshiro, MD, MPH, FACOG, a professor in the Department of Obstetrics, Gynecology, and Women’s Health at the John A. Burns School of Medicine, emphasizes the human cost of diagnostic delay. She told medichelpline that some patients endure years of pain before receiving an endometriosis diagnosis. During that interval, disease progression can occur and negatively affect daily functioning and well-being. Kaneshiro underscores that clearer clinical guidance that facilitates quicker diagnosis will help providers intervene earlier and support patients more effectively.
Addressing barriers beyond the clinic: bias and shared decision making
Impact of racial and gender-identity bias
The updated ACOG guidance explicitly acknowledges that barriers to optimal endometriosis care extend beyond biomedical factors. Racial and gender-identity bias can impede access to timely evaluation, accurate diagnosis, and appropriate treatment. These biases may affect who is believed about their pain, which symptoms are explored, and which diagnostic pathways are pursued, contributing to disparities in outcomes. By identifying these biases as obstacles, the guidance seeks to prompt clinicians and institutions to examine their practices and work toward more equitable care.
Importance of shared decision making
The guidance also emphasizes shared decision making as a central component of endometriosis care. Shared decision making places the patient and clinician in a collaborative partnership: clinicians bring clinical expertise and evidence, while patients contribute their lived experience, preferences, and priorities. For a condition with variable presentation and multiple management options, this collaborative approach helps ensure that care plans align with the patient’s values and life circumstances, potentially improving adherence, satisfaction, and overall outcomes.
Implications for clinicians and patients
What this means in practice
The availability of comprehensive diagnostic recommendations from ACOG aims to standardize and streamline evaluation for endometriosis. Clinicians are encouraged to be vigilant for the condition when patients present with characteristic symptoms—especially when symptoms are persistent, recurrent, or poorly explained by other diagnoses—and to consider endometriosis as a potential cause rather than defaulting to more familiar alternatives. Recognizing bias and committing to shared decision making are essential complements to clinical vigilance, helping ensure that diagnostic and management decisions reflect both best practice and patient priorities.
How patients may benefit
For patients, the updated guidance offers the prospect of timelier recognition and a more patient-centered diagnostic journey. When healthcare teams apply clearer diagnostic criteria, remain aware of systemic biases, and engage patients as partners in care, the likelihood of earlier, accurate diagnosis increases. Earlier diagnosis can reduce the period of untreated symptoms and may limit progression that undermines quality of life.
Conclusion
The ACOG update represents a significant step toward improving the diagnostic pathway for endometriosis by combining clinical recommendations with attention to equity and patient partnership. Given the high prevalence of the condition worldwide and the documented rates of misdiagnosis and delay, these comprehensive recommendations aim to support clinicians in making more timely, accurate diagnoses and to improve outcomes for people living with endometriosis.