ABSTRACT
BACKGROUND: Uterovaginal agenesis (Mayer-Rokitansky-Küster-Hauser Syndrome; MRKH) is a congenital nonformation of the vagina and the uterus, but with normal ovaries. OBJECTIVE: The authors investigated the psychological impact of this disorder, about which very little is known. METHOD: A group of 66 women with MRKH were compared with 31 control-group women on a range of self-rating scales assessing psychological distress and self-esteem. RESULTS: Women with MRKH had significantly more pathological scores on some of the scales and subscales, such as phobic anxiety and psychoticism (interpersonal alienation), with a similar trend for subscales measuring depression and anxiety. CONCLUSION: MRKH has a lasting negative impact on affected women's level of psychological distress and self-esteem.
Subject(s)
Abnormalities, Multiple/psychology , Adjustment Disorders/psychology , Self Concept , Uterus/abnormalities , Vagina/abnormalities , Abnormalities, Multiple/genetics , Adjustment Disorders/diagnosis , Adjustment Disorders/therapy , Adult , Chromosomes, Human, Pair 16/genetics , Cognitive Behavioral Therapy , Cross-Sectional Studies , DNA Mutational Analysis , Female , Humans , Middle Aged , Personality Inventory/statistics & numerical data , Psychometrics , Psychotherapy, Group , SyndromeABSTRACT
BACKGROUND: Utero-vaginal agenesis, also called the Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH), is a congenital abnormality of the female genital tract, characterized by the non-formation of the vagina and the uterus. It is a common cause of primary amenorrhoea. Little is known about the psychological impact and management of this condition. METHOD: We describe a specific model of the core negative psychological impact of diagnosis and medical treatment of MRKH and a cognitive-behavioural therapy of MRKH based on the model (CBT-MRKH). The Medical Research Council's (2002) framework for the development and evaluation of complex health interventions was used for intervention development and evaluation. RESULTS: Evidence from a recent cross-sectional study and a small randomized controlled trial (RCT) provides preliminary support for the model and treatment (Heller-Boersma, Schmidt and Edmonds, in press; Heller-Boersma, Schmidt and Edmonds, 2007), and this is further validated by extensive qualitative material gathered over the course of the RCT from participants. CONCLUSIONS: The model and treatment described may also be applicable to a number of other congenital or acquired gynaecological conditions such as premature ovarian failure, breast cancer, early onset endometrial cancer, female genital mutilation, Turner's Syndrome, ovarian dys/agenesis or, Complete Androgen Insensitivity Syndrome, all of which have a psychological impact not dissimilar to MRKH in terms of these women's sense of self and femininity.
