Stolen adolescence: The experience of adolescent girls with endometriosis

This study explored the experience of 16 adolescent girls, ages 15 to 19, living with endometriosis. Data collection methods included semi-structured interviews and photographs taken by the adolescents to capture the experience of living with endometriosis. Narrative analysis was used to read, interpret, and analyze participants' stories. The girls' interpretations of their photographs during interviews enriched understanding of and added a dimension to their experience with endometriosis. Narrative analysis revealed six core categories: (1) disrupted adolescent life: the struggle to be normal; (2) pain, bleeding and other symptoms; (3) searching for a cause: endo what? (4) growing up too soon: adult concerns; (5) mothers, friends, and others: comforting connections; and (6) feeling alone: disconnections. A seventh category, the struggle for control, was not part of the core experience but is discussed because it included alcohol misuse and anorexia. “Disrupted adolescent life” involved missing out on social functions, school, and feeling different from peers. “Searching for a cause” was described as lack of and conflicting information from health care providers, difficulty accessing a specialist, delay in diagnosis, and not being taken seriously by physicians. “Growing up too soon” meant having concerns about adult issues, e.g., future fertility, fear of cancer, health care insurance, assuming the role of expert and advocate. A diagnosis of endometriosis impinged on all aspects of participants' lives and may have affected their developing identity. Key implications for practice include providing accurate information about menstrual periods, emphasizing that severe menstrual pain is not normal. Assessment of pelvic pain in adolescent girls should include evaluating their activities. Complaints of missing school and being unable to participate in extracurricular activities or socialize with friends should be red flags prompting further evaluation. Nurses can help adolescents with endometriosis explore and develop ways to manage and cope with pain. Nursing students should be taught to conduct complete, accurate health histories with adolescents including exploring the menstrual cycle and sexuality, being aware of signs and symptoms of endometriosis. Future research could focus on long-term effects of endometriosis on self-concept. Longitudinal research is needed on the long-term health effects of repeated hormone therapy and long-term health status of adolescents with endometriosis. Intervention studies on lifestyle, including coping, exercise and nutrition, are also warranted. One policy implication is a macro approach to setting standards in adolescent health to explore whether endometriosis impacts the lives of adolescent females.