I wish I had known: A preliminary study of the journey of people with early onset endometriosis in U.S

Karenina M. Paredes, Nicole Afuape, Perla A. Vargas
In: Journal of Endometriosis and Uterine Disorders · 2025 · vol. 11 , pp. 100125 · doi:10.1016/j.jeud.2025.100125 · W4411341914
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This qualitative study explored the experiences of individuals diagnosed with early-onset endometriosis before age 25, revealing diagnostic delays due to healthcare system barriers, cultural taboos, and a lack of support impacting mental health and quality of life.

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Abstract

• Qualitative insights reveal systemic barriers in adolescent endometriosis care linked to diagnostic delays • Cultural taboos and body politics hinder endometriosis symptom recognition and delay intervention. • Chronic pain, repetitive dismissal and gaslighting drive mental health decline in young patients. • Improvement in both patient and healthcare provider endometriosis education and policy reform will ultimately aid in the improvement of time to endometriosis diagnosis Endometriosis is a complex, estrogen-dependent chronic condition characterized by the growth of endometrial-like tissue outside of the uterus. Lack of Health Care Practitioners (HCPs) knowledge seems to be a key driving factor of diagnostic delays and misdiagnosis. The study's primary aim was to explore the first-hand experience of people assigned female at birth (PAFAB) with early-onset endometriosis using semi-structured online interviews. We interviewed English-speaking PAFAB recruited from virtual endometriosis support groups with a physician diagnosis of endometriosis before age 25. Twenty-four PAFAB who inquired about the study were interviewed. The interviews were conducted via Zoom conferencing, audio-recorded, transcribed, and analyzed using a thematic approach. Most participants were Caucasian (88.1%) ages 19 to 44 years (M = 31.13 – IQR 24.5 -36.5). Mean age of symptoms onset was 13.6 years, and mean age at diagnosis was 26.2. PAFAB with early-onset endometriosis struggle with the lack of reliable information and lack of support and empathy needed to cope with the disease. Their young age at the time of symptoms onset and the cultural taboos about PAFAB’s sexual health negatively impacted their clinical experience. The challenges that PAFAB with early-onset endometriosis face hinder their ability to advocate for themselves, leading to helplessness and poor quality of life. Timely diagnosis and treatment and supportive environments that accommodate public health policies would favor endometriosis patients’ quality of life.

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Condition tags

endometriosis

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