Background: Few studies have addressed the question of psychological impact and long term outcomes in MRKH patients.
Objective and hypotheses: Our national multi-centric study aimed to assess MRKH patients experience concerning diagnostic announcement, treatment perception, impact on psychic functioning, socio-professional integration, affective and sexual life and quality of life.
Method: First 40 MRKH patients aged 1934 recruited from 137 included and who accepted this protocol which included a semi-directive interview and two projective tests (Rorschach and TAT).
Results: Diagnosis was made at 15.2 but understood at 16.8. Medical management took place at 17.6. 75% had surgery and 25% vaginal dilatations. Before medical treatment, 20% underwent one or more psychotherapy session(s). 30% stated diagnosis had an impact on school life; 100% displayed depressed mood and disruption of social and family life. 50% had feelings of shame, and fear of being discovered and unaccepted during an intimate encounter with a man. 100% were heterosexual but with complaints (desire, pleasure and pain) despite a normal gynecological examination. 77.5% were in couple, 15% were single and 7.5% had never had love relationships. 87.5% revealed desire for children, with one adoption and four currently in adoption processes. Interviews underline different issues: i) long wandering before diagnosis; ii) trauma to the announcement; iii) feelings of being different; iv) frequency of eating disorders in immediate post-announcement (12.5%); v) reasons for medical treatment decision: to get rid of the syndrome, be normal or have sex.
Conclusion: We suggest a psychological treatment just after the announcement (to prevent eating or others psychopathological disorders), to avoid rapid surgical correction and favor dilatations, and wait for the young womans demand for treatment fueled by her desire for a romantic and sexual life. ClinicalTrials.gov Identifier: NCT01911884 AP-HP: AOM11168-P110124.
10 - 12 Sep 2016
European Society for Paediatric Endocrinology