Hostname: page-component-cd9895bd7-lnqnp Total loading time: 0 Render date: 2024-12-22T20:33:36.088Z Has data issue: false hasContentIssue false

A Cognitive Behavioural Model and Therapy for Utero-Vaginal Agenesis (Mayer-Rokitansky-Küster-Hauser Syndrome: MRKH)

Published online by Cambridge University Press:  10 June 2009

Jacoline G. Heller-Boersma*
Affiliation:
Queen Charlotte's and Chelsea Hospital and City University, London, UK.
D. Keith Edmonds
Affiliation:
Queen Charlotte's and Chelsea Hospital, London, UK.
Ulrike H. Schmidt
Affiliation:
Institute of Psychiatry, London, UK
*
Reprint requests to Jacoline G. Heller-Boersma, “Scaling Your Mountains” Therapeutic Practice, The Attic Room, Sandy Bay Holistic Veterinary Centre, 11 Gregory Street, Sandy Bay, Hobart 7005, Tasmania, Australia. E-mail: [email protected]

Abstract

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.

Type
Research Article
Copyright
Copyright © British Association for Behavioural and Cognitive Psychotherapies 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Aittomaki, K., Eroila, H. and Kajanoja, P. A. (2001). A population-based study of the incidence of Mullerian aplasia in Finland. Fertility and Sterility, 76, 624625.CrossRefGoogle ScholarPubMed
ACSF Investigators (1992). Aids and sexual behaviour in France. Nature, 360, 407409.CrossRefGoogle Scholar
Beck, J. S. (1996). Cognitive therapy of personality disorders. In Salkovskis, P. M. (Ed.), Frontiers of Cognitive Therapy. New York: The Guilford Press.Google Scholar
Beski, S., Gorgy, A., Venkat, G., Craft, I. L. and Edmonds, K. (2000). Gestational surrogacy: a feasible option for patients with Rokitansky syndrome. Human Reproduction, 15, 23262328.CrossRefGoogle ScholarPubMed
Brooks-Gunn, J. and Reiter, E. D. (1990). The role of pubertal processes in early adult transition. In Feldman, S. and Elliot, G. (Eds.), At the Threshold: the developing adolescent. Cambridge MA: Harvard University Press.Google Scholar
Derogatis, L. R. (1992). SCL-90-R Administrative, Scoring and Procedures Manual – II. Baltimore MD: Clinical Psychometric Research.Google Scholar
Dubas, J. S., Graber, J. A. and Peterson, A. C. (1991). A longitudinal investigation of adolescent changing perceptions of pubertal timing. Developmental Psychology, 27, 580586.CrossRefGoogle Scholar
Edmonds, D. K. (2000). Congenital malformations of the genital tract. Obstetrics and Gynecology Clinics of North America, 27, 4962.CrossRefGoogle ScholarPubMed
Edmonds, D. K. (2003). Congenital malformations of the genital tract and their management. Best Practice and Research in Clinical Obstetrics and Gynaecology, 17, 118.CrossRefGoogle ScholarPubMed
Ehlers, A. and Clark, D. M. (2000). A cognitive model of post-traumatic stress disorder. Behaviour Research and Therapy, 38, 319345.CrossRefGoogle Scholar
Ehlers, A., Clark, D. M., Hackmann, A., McManus, F. and Fennell, M. (2005). Cognitive therapy for post-traumatic stress disorder. Behaviour Research and Therapy, 43, 413431.CrossRefGoogle ScholarPubMed
Fallowfield, L. and Jenkins, V. (2004). Communicating sad, bad, and difficult news in medicine. Lancet, 363, 312319.CrossRefGoogle ScholarPubMed
Frank, R. T. (1983). The formation of an artificial vagina without operation. American Journal of Obstetrics and Gynecology, 35, 1053.CrossRefGoogle Scholar
Garner, D. M. and Garfinkel, P. E. (1997). Handbook of Treatment for Eating Disorders. London: Guilford Press.Google Scholar
Garner, D. M., Olmstead, M. P. and Polivy, J. (1983). Development and validation of a multi-dimensional eating disorder inventory for anorexia and bulimia nervosa. International Journal of Eating Disorders, 2, 1534.3.0.CO;2-6>CrossRefGoogle Scholar
Gilbert, P. (2001). Evolutionary approaches to psychopathology: the role of natural defences. Australian and New Zealand Journal of Psychiatry, 35, 1727.CrossRefGoogle ScholarPubMed
Haffner, D. W. (1995). Facing the Facts: sexual health for adolescents – national commission on adolescent sexual health. USA: Sexual Information and Education Council of the United States (SIECUS).Google ScholarPubMed
Heller-Boersma, J. G., Edmonds, D. K. and Schmidt, U. H. (submitted). A systematic review of the psychological impact of utero-vaginal agenesis.Google Scholar
Heller-Boersma, J. G., Schmidt, U. H. and Edmonds, D. K. (2007). A randomized controlled trial of a cognitive-behavioural group intervention versus waiting-list control for women with uterovaginal agenesis (Mayer-Rokitansky-Küster-Hauser syndrome: MRKH). Human Reproduction, 22, 22962301.CrossRefGoogle ScholarPubMed
Heller-Boersma, J. G., Schmidt, U. H. and Edmonds, D. K. (in press). Psychological distress in women with uterovaginal agenesis (Mayer-Rokitansky-Küster-Hauser syndrome, MRKH). Psychosomatics.Google Scholar
Horowitz, M., Wilner, A. and Alvarez, W. (1979). Impact of events scale: a measure of subjective stress. Psychosomatic Medicine, 41, 209218.CrossRefGoogle Scholar
Ismail-Pratt, I. S., Bikoo, M., Liao, L. M., Conway, G. S. and Creighton, S. M. (2007) Normalisation of the vagina by dilator treatment alone in Complete Androgen Insensitivity Syndrome and Mayer-Rokitansky-Küster-Hauser Syndrome. Human Reproduction, 7, 20202024.CrossRefGoogle Scholar
Janoff-Bulman, R. (1992). Shattered Assumptions: towards a new psychology of trauma. New York: Free Press.Google Scholar
Kaplan, E. H. (1968). Congenital absence of the vagina: psychiatric aspects of diagnosis and management. New York State Journal of Medicine, 14, 19371941.Google Scholar
Lange, A. (1994). Writing assignments in the treatment of grief and traumas from the past. In Zeig, J. (Ed.), Ericksonian Approaches: the essence of the story. New York: Brunner/Mazel.Google Scholar
Lange, A. (1996). Writing assignments with families managing legacies of extreme traumas. Journal of Family Therapy, 18, 373388.CrossRefGoogle Scholar
Medical Research Council (2002). A Framework for Development and Evaluation of RCTs for Complex Interventions to Improve Health. England: MRC Website.Google Scholar
Moorey, S. (1996). Cognitive therapy in adverse life circumstances. In Salkovskis, P. M. (Ed.), Frontiers of Cognitive Therapy. New York: Guilford Press.Google Scholar
Nadarajah, S., Quek, J., Rose, G. L. and Edmonds, D. K. (2005). Sexual function in women treated with dilators for vaginal agenesis. Journal of Pediatric and Adolescent Gynecology, 18, 3942.CrossRefGoogle ScholarPubMed
Nicholson, S. (1995). The narrative dance: A practice map of white's therapy. The Australian and New Zealand Journal of Family Therapy, 16, 2328.CrossRefGoogle Scholar
Padesky, C. A. (1994). Schema change processes in cognitive therapy. Clinical Psychology and Psychotherapy, 1, 267278.CrossRefGoogle Scholar
Pennebaker, J. W. (1997). Opening Up: the healing power of expressing emotions. New York: Guilford Press.Google Scholar
Pennebaker, J. W. (2004). Writing to Heal: a journal for recovering from trauma and emotional upheaval. Oakland CA: New Herbinger Publications.Google Scholar
Piaget, J. (1952). The Origins of Intelligence in Children. London: Routledge and Kegan Paul.CrossRefGoogle Scholar
Rosenberg, M. (1965). Rosenberg Self Esteem Scale (RSE), Society and Adolescent Self-Image. Princeton NJ: Princeton University Press.Google Scholar
Rothbaum, B. and Foa, E. B. (1996). Cognitive-behavioural therapy for post-traumatic stress disorder. In van der Kolk, B. A., McFaerlane, A. C. and Weisaeth, L. (Eds,), Traumatic Stress: the effects of overwhelming experience on mind and body. New York: Guilford Press.Google Scholar
Schalet, A. (2004). Must we fear adolescent sexuality? Medscape General Medicine, 6, 44.Google ScholarPubMed
Schmidt, U., Evans, K., Tiller, J. and Treasure, J. (1995). Puberty, sexual milestones and childhood sexual abuse: how are they related in eating disorder patients? Psychological Medicine, 25, 413417.CrossRefGoogle ScholarPubMed
Schoutrop, M., Lange, A., Duurland, C., Bermond, B., Sporry, A. and de Goederen, A. (1997). The effect of structured writing assignments on reprocessing traumatic events: an uncontrolled trial. Journal of Clinical Psychology and Psychotherapy, 4, 179185.3.0.CO;2-C>CrossRefGoogle Scholar
Stattin, H. and Magnusson, D. (1990). Pubertal Maturation in Female Development. Hillsdale NY: Lawrence Erlbaum Associates.Google Scholar
Strubbe, E. H., Cremer, C. W. and Willemsen, W. N. (1994). The Mayer-Rokitansky-Küster-Hauser syndrome, without and with associated features: two separate entities? Clinical Dysmorphology, 3, 192199.Google Scholar
Whincup, P. H., Gilg, J. A., Odoki, K., Taylor, S. J. C. and Cook, D. G. (2001). Age of menarche in contemporary British teenagers: survey of girls born between 1982 and 1986. British Medical Journal, 322, 10951096.CrossRefGoogle ScholarPubMed
Submit a response

Comments

No Comments have been published for this article.