ESPE Abstracts (2016) 86 P-P1-354

Psychological Impact in Young Women of Announcement of a Utero-Vaginal Malformation (Mayer-Rokitansky-Kuster-Hauser - MRKH Syndrome) and its Treatment

Karinne Guenicheb,f, Chloé Ouallouchea,f, Nicole Nataf j, Maud Bideta,f, Alaa Cheikhelardc,f, Bertrand-Jean Panield,f, Christine Louis-Sylvestrei,f, Karine Morcelh, Magali Viauda,f, Caroline Eliee, Amandine Baptistee, Yves Aigrainc,f & Michel Polaka,g


aUnité d’Endocrinologie, Gynécologie et diabétologie pédiatrique, Hôpital Necker – Enfants Malades, Université Paris Descartes, Paris, France; bInstitut de Psychologie, PCPP EA 4056, Université Paris Sorbonne, Boulogne, France; cService de chirurgie pédiatrique, Hôpital Necker – Enfants Malades, Université Paris Descartes, Paris, France; dService de chirurgie gynécologique, Centre Hospitalier Intercommunal de Créteil, Créteil, France; eService de biostatistique, gynecology and diabetology, Hôpital Necker – Enfants Malades, Université Paris Descartes, Paris, France; fCentre des Pathologies Gynécologiques Rares (PGR), Université Paris Descartes, Paris, France; gImagine Institut, Paris, France; hPôle obstétrique, gynécologique et médecine de la reproduction, Hôpital Sud, Rennes, France; iService de chirurgie gynécologique, Institut Mutualiste Montsouris, Paris, France; jPsychologue clinicienne et psychanalyste, Paris, France


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 19–34 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 woman’s demand for treatment fueled by her desire for a romantic and sexual life. ClinicalTrials.gov Identifier: NCT01911884 AP-HP: AOM11168-P110124.