The lived experience of females eighteen years and older with congenital adrenal hyperplasia who have undergone feminizing genitoplasty

The purpose of this investigation was to examine the lived experiences of females 18 years and older with congenital adrenal hyperplasia (CAH), who have undergone feminizing genitoplasty (FG). Feminizing genitoplasty can be clitorectomy, clitoral reduction, or vaginoplasty. The specific goal of this study was to gain insight into the experience of these women to assist healthcare providers understand the experiences of women with CAH who have undergone FG from the woman's perspective.

A hermeneutic phenomenology design based on the philosophical underpinnings of Gadamer was utilized to obtain the experiences of these women through their stories. In depth interviews were structured with a grand tour question and probes to encourage the women to share their experience. Seven women 18 years or older with CAH who have undergone feminizing genitoplasty chose to participate in the investigation. Data obtained during the interviews were analyzed using Max van Manen's method of data analysis (1990).

Six major themes emerged: (a) normalcy, (b) being different, (c) relationships, (d) decision making, (e) individual's level of interest in CAH/FG, and (f) having children.

Normalcy is conforming to a standard, of being regular and usual. All participants in the investigation wanted to be perceived as "normal" by their family, friends, and sexual partner. Individual's interest level revealed the participant's awareness of information relating to CAH and which FG procedure they have undergone. Included in this definition are the participant's memories of any hospitalizations, medications, surgical procedures, and post operative care they received. Decision-making is related to the process that occurred between the clinician and the family member who decided the participant would have feminizing genital surgery. The theme having children was derived from the probe, "Have you ever considered having children?" The majority of participants are interested in having children one day. The theme relationship is defined as a connection or association between people. In this investigation three types of relationships were explored, familial, friends, and sexual relationships which is inclusive of sexual behaviors occurring during the participants relationship with a sexual partner.