Abstract
Cystic fibrosis (CF) and congenital absence of the vas deferens (CAVD) are conditions caused by mutations in the CFTR gene. Ninety-five percent of men with CF and/or CAVD have infertility due to azoospermia. Until recently, men with CF were not likely to live into adulthood and because of this, issues surrounding CF-related infertility did not receive much attention. However, as improved care and treatments continue to extend the life expectancy for individuals with CF, the need to understand how affected men are feeling about issues surrounding CF-related infertility is becoming increasingly relevant. The purpose of this study is to explore the experiences of men with CF and/or CAVD in disclosing their infertility to romantic partners, the effects that both disclosure and associated infertility have had on their romantic relationships and their thoughts on reproduction. We used an anonymous online survey and received 37 responses. We found that nearly half of our participants (44.4%) desired more information at the time of learning about CF-related infertility, and that some wished they had learned this information at an earlier age. Almost all participants (97.2%) had disclosed CF-related infertility to their romantic partner and felt supported after doing so. While many men stated they were concerned that their romantic partners would react negatively to learning about CF-related infertility, few (21.4%) felt their partners actually had negative reactions after disclosure. In addition, the majority of men (61.1%) in this study felt like CF-related infertility did not affect their ability to establish romantic relationships. Finally, 75% of men indicated they think about having or already have children, and most men discussed this with their romantic partner. This is one of the first studies to explore the issues men with CF and infertility face and the results provide valuable insight for other men affected by CF and CAVD, as well as the healthcare professionals who provide care for them.