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

Abstract

Objective

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.

Materials and methods

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.

Results

Most participants were Caucasian (88.1%) ages 19–44 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.

Conclusion

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.