Psychological Changes and Adaptation: Primary Amenorrhea Associated with Disorders of Sex Development

  •  Kazuyo Iwami    
  •  Tomoko Sumiyoshi    
  •  Shinobu Ida    


This qualitative study investigated the psychological changes and process of adaptation among women after a diagnosis of primary amenorrhea associated with disorders of sex development (DSD). Data were obtained of 20 patients aged ≥ 25 years via interviews and analyzed using the modified grounded theory approach. Six categories were created: increasing doubt about gender identity, questioning and exploratory behaviors, feelings of loneliness and confusion, searching for self with the help of support resources, control for coexistence in society, living at peace with one’s body, and liberation from a sense of alien existence. Participants experienced fluctuations in parameters of gender identity, loneliness, and confusion. Encountering good experiences during exploration of helpful resources made them more confident of their female gender identity, thus helping them adapt. For women with primary amenorrhea associated with DSD, the process of becoming liberated from an obsession with their condition after receiving a diagnosis was characterized by the phrase “regaining confidence in being a woman.”

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