Abstract

In this study, we assessed the age of women with primary amenorrhea associa ted wi th disorders o f sex development at the time of full disclosure, examined the appropriateness of FD based on their subjective views, and investigated inhibitory factors and ethical issues of FD. The corresponding narratives from interview data of 19 women aged 25 years or older were classified. The patients were divided into two groups according to whether they considered the timing of FD to be appropriate or late. The appropriate group included nine individuals with ages at FD of 18.3 ± 2.29 years, whereas the late group comprised 10 individuals with ages at FD of 25.2 ± 5.77 years. The number of years between diagnosis and FD was significantly higher in the late group than in the appropriate group. The preference of parents and pediatricians was often the reason for delayed FD. Many patients showed confusion in their gender identity at the time of FD. These findings highlight the importance of FD and the need for careful and continuous support.