More than half of women and girls with sickle cell disease (SCD) experience increased pain during menstruation, according to a new study published in JAMA Network Open. The research, which analyzed data from 211 female patients at 13 SCD centers across 11 states, found that 64 percent reported disease-related pain coinciding with their periods.
The study revealed a significant correlation between menstrual pain and increased healthcare utilization. Among those experiencing period-related pain, 44 percent required one to three emergency department (ED) visits, and 19.1 percent needed four or more ED visits over a six-month period. Hospitalization rates were too elevated in this group.
“Not asking women and girls with sickle cell disease about their periods as standard of care not only ignores the pain of many female patients, but, now, the research,” said Dr. Neha Bhasin, a pediatrician and director of the Pediatric Comprehensive Sickle Cell Center at UCSF Benioff Children’s Hospital Oakland, who led the study.
Sickle cell disease is a genetic blood disorder that causes red blood cells to become rigid and misshapen, obstructing blood flow and leading to severe pain, organ damage, and a reduced life expectancy. While pain is a hallmark symptom of SCD, the study highlights that female patients generally experience higher rates of pain and hospitalization compared to their male counterparts.
Researchers also noted that female SCD patients commonly face reproductive health challenges, including delayed puberty, pregnancy complications, early menopause, and abnormal uterine bleeding. Despite these issues, the study found that over 80 percent of patients were not using birth control medication, and nearly one in four reported never having been informed about reproductive health treatments related to SCD.
The National Alliance of Sickle Cell Centers (NASCC) recently developed consensus standards and recommendations for the clinical care of individuals with SCD throughout their lifespan, including preventative care, acute complication management, and disease-modifying treatments like hydroxyurea. These recommendations were based on an in-depth review of the literature and input from 41 pediatric and adult sickle cell disease experts, with expanded participation from 81 NASCC-recognized centers in the final voting stage in 2023.
The UCSF Sickle Cell Center of Excellence focuses on improving clinical outcomes and quality of life for individuals with SCD and their families through comprehensive medical care, research, and psychosocial support.
