Little is known about the impact of hidradenitis suppurativa (HS) on patients’ sexuality. The aim of this research is to investigate the impact of HS on several previously unexplored aspects of sexuality. In March 2018, we conducted a crowd-sourced cross-sectional online survey hosted by the Spanish association of patients with HS (ASENDHI) and available in Spanish. A panel of experts and patients from ASENDHI designed various questions in order to explore the extent to which HS influenced participants’ sex lives. The final sample consisted of 386 participants, 79.27% (306/386) of which were women and 20.73% (80/306) of which were men. Seventy-seven point one percent (236/306) of women and 67.5% (54/80) of men were in stable relationships; the rest of the participants were single. Forty-seven point nine percent (185/386) admitted to feeling fear of rejection. Pain was the symptom that most interfered with sexual relations in women and suppuration in men. Forty-four point three percent (171/386) of the participants considered themselves to be less attractive than average. Considering the participants in a stable relationship, women described receiving more emotional support from their partners, while men received more help with lesion dressing in intimate areas. Seventy-one point four percent (207/290) of participants stated that HS negatively affected their relationship. Among single patients, women experienced greater fear of rejection and were less willing to meet new people because of HS. Ninety-four point three percent (66/70) of women and 80.8% (21/26) of men stated that HS had a negative influence on their chances of having a relationship or sexual relations. In conclusion, HS has a significant, unrecognized and misunderstood impact on sexuality which must be addressed.
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