Age and Endometriosis: Understanding Flares Across the Lifespan

Endometriosis is a chronic condition that affects millions worldwide, yet its impact is not uniform across age groups. From teenagers experiencing their first painful periods to adults navigating long diagnostic delays, age plays a critical role in how endometriosis is experienced, understood, and managed.

At the 16th World Congress on Endometriosis in Sydney, Dr. Lydia Coxon from the University of Oxford shared her research on endometriosis flares—episodes where symptoms become significantly worse than usual—and highlighted how younger people, in particular, are underserved in current studies.

What Are Endometriosis Flares?

Dr. Coxon defines flares as periods when pain symptoms intensify beyond the usual baseline. While widely discussed on social media (with hashtags like #endoflare appearing in over 23,000 posts), flares remain under-researched in clinical settings. Understanding these episodes is crucial, especially for younger patients who often struggle to articulate their experiences and may not yet have a formal diagnosis.

The Impact on Young People

Dr Coxon’s research shows that flares have a massive impact on daily life, disrupting school, work, social activities, and mental health. The surveys conducted reveal that young people rate flares as highly bothersome, often preventing them from participating in normal routines.

Key challenges for younger age groups with endometriosis include:

• Diagnostic delays: Many are not formally diagnosed until years after symptoms begin, leaving a critical gap in care.
• Accessibility of research: Studies often exclude those under 18 due to ethical considerations, meaning their voices are missing from data sets.
• Social media as a lifeline: Platforms like Instagram provide spaces for young people to share experiences, but this community knowledge is rarely integrated into formal research.

Endometriosis Across Age Groups

While younger people face unique barriers, age influences endometriosis in multiple ways:

• Adolescents: Symptoms may be dismissed as “normal period pain,” delaying recognition and treatment.
• Young adults: Often navigating education, early careers, and relationships, flares can severely impact quality of life.
• Older adults: May experience changes in symptom patterns, and often carry the burden of years of misdiagnosis or inadequate care.

This highlights the need for age-sensitive approaches in both research and treatment.

Future priorities include

Dr Coxon explains that next steps include:

• Developing guidance for healthcare practitioners on managing flares across age groups.
• Expanding research to include adolescents and young adults, despite ethical challenges.

Endometriosis Australia is currently working to create age-appropriate endometriosis resources for young people and early adolescents.

This work forms part of the Priority Populations grant awarded by the Department of Health and Aged Care to Endometriosis Australia as part of the National Action Plan for Endometriosis (NAPE). The purpose of which is to support the development of endometriosis-specific media, awareness and information materials that are tailored to priority populations for enhanced accessibility and understanding of endometriosis.