The Sexual Experiences of People Living with Sickle Cell Disease

Sickle cell disease (SCD) affects over 8 million people globally and 1 in 365 Black infants in the United States are born with SCD. Because of recent medical advances, people are living significantly longer with SCD, with opportunities to experience romantic and sexual relationships. However, people with SCD experience medical challenges, such as pain crises, which can occur during partnered sexual activities. This study sought to understand how SCD impacts a person's sexual life. Using thematic analysis, 18 people, between 18 and 59 years old, gave an account of their experiences with solo masturbation and partnered sexual activities. Five themes were constructed: (1) Experiencing a Sex- or Orgasm-Induced Pain Crisis From Solo Masturbation and Partnered Sexual Activities; (2) Sexual Satisfaction and Orgasmic Pleasure; (3) Sickle Cell-Related Genital Pain With and Without Sexual Activity; (4) Intimate Connection With Sexual Partner; and (5) Communication About the Intersection of Sexuality and SCD. Overall, the participants described having satisfying experiences with solo masturbation and partnered sexual activities. However, a sex- or orgasm-induced pain crisis has impacted their sexual lives, including hospitalizations from said event. Additionally, participants experienced sickle cell-related genital pain with and without sexual activity.