Roger Watson, Editor-in-Chief
Young women with a disorder of sex development: learning to share information with health professionals, friends and intimate partners about bodily differences and infertility' and published in JAN set out, as the authors explain: 'To understand the experiences of young women with a disorder of sex development when sharing information about their body with healthcare professionals, friends and intimate partners.'
Thirteen women in the UK with a disorder of sex development aged between 14-19 years were interviewed and completed diaries over 6 months. Sex development disorders included chromosomal disorders, vaginal atresia, where the vagina is either absent or closed, cloacal anomalies, where only one opening is present for gastrointestinal, urinary and reproductive systems, and congenital adrenal hyperplasia, which leads to unusual genitalia in women.
It is especially difficult for young girls to find out about their conditions; most obtained information from their parents. They also found it difficult to tell friends too much for fear of the details being shared with others. For some women, normal penetrative sexual intercourse was never going to be possible leading to fears about intimacy and sexual partnership. Some women would never have children and some of those who could did not want to for fear of passing on their condition.
Concluding the article, in their own words, the authors say: 'Health professionals need to consider taken-for-granted assumptions, such as those relating to sexual intimacy; some of the young women felt that health professionals assumed they would be in heterosexual relationships while some were in same sex relationships. The development of attachment, intimacy and identity are inextricably linked. Health professionals should acknowledge the impact that bodily difference has on young women’s ability to build a secure identity and adjust to the meaning bodily differences have to them and the impact of their infertility.'
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Sanders C, Carter B, Lwin R (2015) Young women with a disorder of sex development: learning to share information with health professionals, friends and intimate partners about bodily differences and infertility Journal of Advanced Nursing doi: 10.1111/jan.1266