Exploring Early Symptoms of Endometriosis in Adolescence: A Qualitative Study to Support School-based Screening Initiatives in Palembang, Indonesia

FNU Hartati, Dwiana Ocviyanti, Yusuf Effendi, Ramzi Amin, Wiryawan Permadi, Masagus Irsan Saleh, Zen Hafy, Bella Stevanny
In: Journal of South Asian Federation of Obstetrics and Gynaecology · 2026 · vol. 18(2) , pp. 155–164 · doi:10.5005/jp-journals-10006-2871 · W7163667559
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This qualitative study explored recalled adolescent endometriosis symptoms from adult women to develop a school-based screening questionnaire for early detection and reduced diagnostic delay.

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Abstract

Aims: To explore early symptoms and lived experiences of endometriosis during adolescence, as recalled by adult women diagnosed with endometriosis, to identify indicators for a screening questionnaire for high school girls.Background: Endometriosis is a chronic, estrogen-dependent inflammatory disease affecting 10% of women of reproductive age.It manifests as dysmenorrhea, pelvic pain, and infertility.Among adolescents, early symptoms are often dismissed as normal menstrual pain, leading to diagnostic delays of 7-10 years.In Indonesia, limited awareness and the absence of adolescent-focused screening tools further contribute to underdiagnosis, particularly in cities like Palembang, where reproductive health education is minimal.Materials and methods: This qualitative study involved 15 women aged 30-45 years with confirmed endometriosis at Dr. Mohammad Hoesin Hospital, Palembang.Through in-depth interviews, participants recalled their adolescent menstrual experiences.Thematic analysis was conducted to identify recurring symptoms and contextual influences.Key findings informed the development of preliminary questionnaire items for screening.Results: Most participants reported menstrual pain starting from menarche, described as stabbing, squeezing, or radiating to the lower back and pelvis.Pelvic pain outside menstruation, painful defecation, and daily activity limitations were frequently reported.Few experienced urinary symptoms.Some noted a maternal history of similar complaints.Menstrual issues negatively impacted school attendance, social interaction, and mental well-being.These narratives were translated into 24 structured screening questions.Conclusions: Menstrual symptoms in adolescence may signal early endometriosis.Structured school-based screening using symptom-driven questionnaires could promote earlier recognition and reduce diagnostic delay, ultimately improving reproductive health outcomes in adolescents.

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