Long-Term Outcome of Gender Reassignment in 46XY DSD Patients in Multicultural Society
Binyamin B. Neeman, MD, Stanislav Kocherov, MD, Jawdat Jaber, MD, Amicur Farkas, MD, Floris Levy-Khademi, MD, Boris Chertin, MD.
Shaare zedek medical center, Jerusalem, Israel.
Background: Differences of sex development (DSDs) are a constellation of conditions that result in genital ambiguity or complete sex reversal. Gender assignment for newborns with ambiguous genitalia remains one of the most controversial issues in pediatrics. The clinical data on primary gender assignment and conversion have been extremely sparse and remain difficult to obtain. 46XY DSD is a heterogeneous group typically with variable degrees of undervirilization. The decision about sex of rearing in this group is heavily connected to the shared decision-making model and multidisciplinary team. However, in spite of that, some of these patients might develop gender identity disorder (GID), when they become adults. Therefore, we have aimed to evaluate the long-term outcomes of patients with XY DSD who underwent female gender assignment at our center. Methods: We have conducted a retrospective study of all 46 XY DSD patients who underwent female reassignment in our institution over the last 30 years. We have identified 25 patients who underwent either gonadectomy and/or feminizing genioplasty at a median age of 72 months. The primary diagnosis was 3 β-hydroxysteroid dehydrogenase deficiency in 8(32%) patients, androgen insensitivity syndrome (complete or partial) in 10(40%), 5α-reductase deficiency in 1(4%), Ovotesticular DSD 3(12%) and Mixed gonadal dysgenesis in the remaining 3(12%) patients. 13(52%) patients were Jewish, 7(28%) Muslims and the remaining 5(20%) were Christians. The decision on gender rearing was made by the parents in 15(60%), by the patient in 7(28%), and in the remaining 3(12%) patients by the surgical team during hernia repair/inguinal exploration. Results: 14(56%) out of 25 patients agreed to answer questionnaires regarding sexual function and satisfaction from gender assignment. Two patients (one Christen and one Muslim) regretted the decision of female gender assignment. The first with 5α-reductase deficiency, who made the decision for reassignment herself as an adult and the other who underwent gonadectomy during inguinal exploration elsewhere as a child. The rest of the patients were satisfied with the surgical results and their gender, although three have required psycho sexual support. Five patients have had sexual intercourse on a regular basis (one of them homosexual). The Muslims and Orthodox Jews communities reported the difficulty in finding a match for their daughters and they consider committed partnership significantly later in the life. We haven't found any difference in GID regarding the different cultural background. However, in the Muslim population the decision regarding gender reassignment was done by the guardians significantly earlier in the life. None of the patients reported problems in urination or UTI. Conclusions: Despite the sensitivity of the subject and cultural differences, most patients were satisfied with the decision to undergo female gender reassignment. Over the years, patients require meticulous follow-up in order to consider additional interventions, and mental support if it is necessary. The two cases of later regret highlight the importance of proper education of patients, their families and medical providers upon decision on gender assignment.
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