Experiencing infertility

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There are few studies in the extensive professional literature on TS that ask women with TS about their thoughts on the infertility, or their experiences of adoption or IVF. Sylven etal. (1993) found in semi-structured interviews with 22 women that half (11) said infertility was the most difficult part of having TS. In their study of 63 women, Wide Boman etal. (2000) reported that out of 55 (87%) who remembered their reaction to the diagnosis ofTS, 49 (78%) reported negative consequences of having TS, with infertility as one of the consequences most often mentioned. Tang (1989), in a study of 86 Chinese women, found that for 51 per cent (44) the stigma of infertility appeared a cultural barrier to marriage or relationships. Kagan-Kreiger (1999), in her qualitative study of eight women with TS aged 23-44 years, found that most of them needed to rethink or revisit their feelings about their infertility, sometimes with the help of therapy, in order to ameliorate its impact on their relationships and self-image and to come to terms with themselves as women. In my own qualitative phenomenological study of three women with TS (Loughlin 1998) one woman aged 47 felt that the lack of clarity about her infertility, along with misunderstanding of her diagnosis, was detrimental to her sexuality and marriage; another woman, aged 26, experienced infertility as a major issue that affected her adjustment to TS; and for the third woman, aged 19, infertility had a daily presence in her mind.

Orten and Orten (1994) reported on the direct effect of fertility status on adult women with TS and their relationships. They found that a persistent concern of women in the TS support group was about how to tell a prospective male partner about their infertility. A recurrent theme with adult women from the TS support group in Melbourne was continuing regret that they could not meet with what they felt was society's expectation that women should become mothers (Loughlin 1993).

No published studies of adolescent attitude to loss of fertility through TS were found.

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