Living with an incomplete vagina and womb: an interpretative phenomenological analysis of the experience of vaginal agenesis

Abstract

The objective of this study was to explore women's personal experiences of living with vaginal agenesis to gain insight in to psychological, social and emotional consequences of diagnosis and treatment. It employed interpretative phenomenological analysis for an in-depth exploratory study of a small sample of women with vaginal agenesis. The verbatim transcripts of semi-structured interviews with seven women diagnosed with vaginal agenesis were used as data for an interpretative phenomenological analysis. Four themes emerged which are described under the following headings: dealing with loss, the experience of medical services, sharing with others, and the role of time. Participants struggled to understand the meaning of their diagnosis and to incorporate it in to a new sense of self. Contact with medical services generally enhanced feelings of uncertainty and isolation. Emotional distress was managed through cognitive strategies and choices about disclosure to others. Participants described how the experience of their loss recurred over time in different ways depending on the salience of their sexual and reproductive identities. Some implications for health care professionals are discussed.