Menstruation and Increased Vaso-Occlusive Pain in Females with Sickle Cell Disease

Menstruation was described as a frequently reported time for disease-related pain among women and girls with sickle cell disease (SCD), and the report found that endorsement of menstrual-associated sickle cell pain was associated with higher acute care utilization over the prior six months.

In a multicenter cross-sectional survey study conducted across 13 U.S. SCD centers, 64% of participants reported SCD-related pain during menstruation. The research also reported that participants who endorsed menstrual-associated pain had higher numbers of emergency department (ED) visits and hospitalizations in the six months prior to enrollment compared with those who did not report such pain. Overall, the description frames menstruation as a commonly cited context for pain in this population, based on participant report.

The study included 211 female patients across 13 SCD centers in 11 states, with ED visits and hospitalizations summarized for the six months preceding survey enrollment. Within that timeframe, the research emphasized patient-reported pain during menstruation alongside retrospective health care utilization (ED visits and hospitalizations).

Among participants who reported menstrual-associated pain, the report described substantial acute care utilization in the prior six months: 44.3% had 1–3 ED visits and 19.1% had 4 or more ED visits. Hospitalizations were also more frequent in this group compared with participants who did not endorse menstrual-associated pain. In aggregate, the subgroup reporting menstrual-associated pain was described as having greater acute care use over the same six-month period.

Reproductive health gaps were reported alongside the pain and utilization findings: 80.8% of participants were not using hormonal contraception, and 22.1% reported that they had never heard of hormonal therapy (birth control medication).

The authors propose annual menstrual history screening in SCD clinics and suggest that brief reproductive health assessments may facilitate clinician–patient dialogue and improve personalized care. They also describe clinician-reported intended actions after reviewing patient surveys, including reproductive health education, referral to reproductive health specialists, and evaluation for iron deficiency or bleeding disorders.

Key Takeaways:

• In the multicenter cross-sectional survey study, 64.4% of participants reported SCD-related pain during menstruation.
• Participants endorsing menstrual-associated pain had higher numbers of ED visits and hospitalizations in the six months prior to enrollment compared with those who did not.
• The report identified low hormonal contraception use and knowledge gaps and describes proposed annual menstrual-history screening and clinician-intended reproductive health interventions based on survey findings.