Women’s lived experience of endometriosis-related fertility issues

OBJECTIVE: The aim of the present study is to conduct a qualitative investigation to provide a deeper understanding of women’s views about endometriosis, fertility and their perception of reproductive options. METHODS: Semi-structured interviews were conducted by two female psychiatrists, specialized in gynecology and obstetrical consultation-liaison psychiatry, trained in qualitative procedures, with experience in qualitative studies and in psychological support of women attending infertility consultations. No prior relationship with respondents was established before data collection. Interviews were tape-recorded and transcribed. Interviews lasted 45–75 minutes. The transcripts were then analysed using thematic content analysis. RESULTS: Twenty-nine women were contacted. Twelve agreed to an interview at the hospital’s infertility clinic. Eleven women with diverse sociodemographic characteristics were included. The key findings of thematic content analysis can be grouped into four topics: (1) Diagnostic announcement and initial delay; (2) Negative perceptions of initial care: pre-diagnosis phase; (3) Struggle with endometriosis and its treatment; (4) Issues related to health problems, fertility and reproductive options. CONCLUSION: Our analysis of the interviews corroborates the distressing impact of the trivialization of pain and the uncertainty of or the long quest for diagnosis. The findings also stress various associated issues, from the diagnostic delay to the low success rates of fertility treatments. This qualitative analysis contributes to better understand the accumulation of negative emotions within the illness trajectory and the poor dyadic adjustment within the couple.