Abstract
Turner syndrome (TS) is a chromosomal condition caused by a complete or partially missing second sex chromosome, with the typical karyotype for affected individuals being 45,X. Among the various clinical features associated with TS, such as short stature, cardiac and renal abnormalities and infertility, the latter has often been cited to be the hardest to deal with. Despite this, there has been a lack of research done on how infertility affects the lives of women with TS, especially exploring the circumstances surrounding learning about their infertility and conversations later on when they share the information with a romantic partner or friend. This study aimed to examine the experiences of women with TS and assess if there was any correlation between their initial conversation about infertility and those that came later with friends and romantic partners. Participants were recruited through social media to take an anonymous online survey asking about both their experiences being told about their diagnosis of TS and related infertility, and telling others about their condition. A total of 47 women with TS, whose ages ranged from 18-40 years, and all had a diagnosis of TS before adulthood, participated in the study. Nearly half of participants were diagnosed with TS by age 5, slightly over half learned of their infertility at the same time as their diagnosis and the average age at which they learned of their infertility was 12.5 years. Individuals were likely to be more satisfied with the discussion about their infertility if they were told by parents or endocrinologists than if they found out on their own. Factors that the largest proportion of participants deemed important to consider before discussing the infertility aspect of TS were the amount of information provided and comfort with the individual telling them. When disclosing to romantic partners and friends, many participants reported that both groups were accepting and supportive. The most common advice from participants on how to tell a young woman with TS about her infertility was telling them sooner rather than later. Participants also had the same advice for disclosing in romantic and platonic relationships as well as trusting your instincts with when and whom to tell. This study provides insight into the experiences women with TS have surrounding discussions of their infertility that will help both parents, health care professionals, and the women themselves be better prepared to have conversations about this sensitive subject.