Hypothesis / aims of study
Priapism is a well-recognized sexual complication in men with sickle cell disease (SCD), reflecting the impact of vaso-occlusive mechanisms on genital tissues (1). However, whether women with SCD experience comparable sexual complications remains largely unexplored.
Sexuality is a key domain of quality of life and may be significantly affected by chronic pain and its psychological burden (2). SCD comprises a group of genetic hemoglobin disorders with variable clinical severity, with more severe genotypes such as HbSS and HbSβ⁰ associated with higher frequency of vaso-occlusive crises (VOCs). In this context, recurrent VOCs—painful episodes caused by microvascular obstruction—may further impair sexual function, yet sexual health remains underexplored in women with this condition.
We aimed to evaluate sexual function, sexual pain, and quality of life in women with SCD, with a specific focus on the occurrence of sexual activity–triggered VOCs and their relationship with sexual function.
Study design, materials and methods
This prospective observational single-center study was conducted between July and December 2025. Sixty-two women aged ≥18 years with confirmed SCD (all genotypes) were included. Participants completed structured sociodemographic, clinical, and gynecological questionnaires.
Sexual function was assessed using the Female Sexual Function Index (FSFI) (3) and health status using PROMIS measures (global health, anxiety, depression). Qualitative reports of sexual experiences were also collected.
Associations between clinical variables and sexual function were analyzed using correlation tests.
Results
Participants had a median age of 43 years, and 62.9% presented severe genotypes (HbSS/HbSβ⁰), which are associated with higher frequency of vaso-occlusive crises. Pain burden was high, with 87.1% reporting regular analgesic use, including opioids (51.9%).
Among sexually active women (n=59), 47.5% reported pain during or after intercourse. Importantly, more than one in four women (25.5%) reported vaso-occlusive crises triggered by sexual activity (1.7% during intercourse, 15.3% immediately after, and 8.5% within 24 hours).
FSFI scores indicated a high prevalence of sexual dysfunction, with 89% scoring below the clinical cutoff (<26.55; mean 23±2.8). The most affected domains were lubrication (mean ~2.5±0.5) and pain, with frequent reports of penetration-related dyspareunia. Lubricant use was reported by 82% of women maintaining penetrative intercourse.
Qualitative data described mechanical limitations due to joint pain—particularly in hips, knees and wrists—and difficulty maintaining comfortable sexual positions. PROMIS scores revealed impaired physical (T-score 32) and mental health (T-score 35), with elevated anxiety (T-score 63) and depression (T-score 57). Women with severe genotypes were less likely to have stable partnerships (p<0.05).
FSFI analysis (n=19) demonstrated a significant negative correlation between VOC frequency and sexual desire (r = −0.599; p = 0.006), with trends toward reduced arousal and satisfaction. Findings suggestive of clitoral priapism were rare.
Interpretation of results
Sexual dysfunction in women with SCD appears to be driven by the interaction between chronic pain, anticipatory fear of VOCs, and functional musculoskeletal limitations.
The identification of sexual activity as a trigger for vaso-occlusive crises represents a novel mechanism linking disease activity to sexual avoidance and reduced sexual desire. These findings also suggest a potential interaction between vaso-occlusive pain mechanisms and pelvic floor-related sexual dysfunction.