Gender assignment and medical history of individuals with different forms of intersexuality: evaluation of medical records and the patients' perspective

Abstract

Introduction: Until now, there are only few studies that focus on the specific treatment experiences of people with intersexuality and evaluate their outcome in terms of psychological, physical, and social well-being. Further, the presentation of the patients' perspective is often neglected in research.

Aim: Overview of preliminary results of the Hamburg-Intersex-Study on gender assignment and medical history of adult subjects with intersexuality (disorders of sex development), as well as the patients retrospectively stated thoughts and feelings regarding these interventions.

Main outcome measures: Medical records from participants of the study were analyzed. The subjective attitudes and evaluation of the treatment measures were assessed with a self-constructed questionnaire. Data on psychological well-being were measured with the Brief Symptom Inventory.

Methods: In total, 37 adult participants (mean age 30.6 years) with following diagnosis were included: congenital adrenal hyperplasia, complete and partial androgen insensitivity syndrome, gonadal dysgenesis and disturbances of the androgen biosynthesis, such as 5 alpha reductase deficiency and 17 beta hydroxysteroid deficiency.

Results: The majority of participants had (often multiple) genital surgery to correct the appearance of their genitalia and/or to enable sexual functioning. The diagnostic groups differ not only in amount and invasiveness of experienced surgical and medical treatment but also in the subjective and retrospective evaluation of the treatment measures and in the amount of reported psychological distress.

Conclusion: Many subjects stated to have experienced the medical procedures and care very negatively, whereby the aspects of secrecy, untruthfulness, and concealment were stated as most difficult and burdening.