Endocrine Abstracts

Background: Many patients with 46, XX congenital adrenal hyperplasia (CAH) were born with a masculinized genital appearance. Early feminizing surgery has been offered to promote acceptance of gender, optimize social participation and to enable penovaginal intercourse. These procedures have been criticized for being unethical and harmful. The Belgian and Dutch Ministries of Health explore possibilities to legally prohibit genital feminizing and masculinizing surgery in underaged children.

Aim: TO explore the perspectives of Belgian and Dutch women diagnosed with CAH, who underwent genital surgery in childhood, on the discussion described above.

Methods: Two focus groups - one in Belgium, one in The Netherlands - to discuss participants’ experiences and perspectives on the present debate. Participants were 18 years or above, had been diagnosed with 46,XX CAH and had undergone feminizing surgery in childhood. Discussions were audio-recorded, transcribed and uploaded in NVivo, software for computer-assisted non-numerical data analysis to conduct thematic analysis.

Results: Ten women aged 24 – 65years, volunteered; five participated in the focus groups and five shared their experiences in an individual interview as they felt uncomfortable to do this in a group. Four women had given birth to nine children. All women emphasized that feminizing surgery facilitates social participation, psychological wellbeing and body acceptance. Older women stressed the psychological burden of growing up with an atypical genital appearance and the desire for congruence between body and gender identity. Women agreed that invasive and irreversible surgery had disregarded their bodily integrity and autonomy. They noticed a challenge to determine an appropriate cut-off age at which such surgeries can be done and decisional distress in adolescence.

Conclusions: Although participants reported psychological distress, physical discomfort and traumatic memories related to surgery and follow-up examinations, they valued alignment of body and gender and protection against societal harm. We observed a gap between the complex lived experience of patients with CAH and activists’ perspectives, underscoring the necessity for patient-centered management and further investigations in both surgical and non-surgical options for CAH. Important limitations in our study were the absence of participants who identified as male or non-binary and the small number of participants.