Pain related to sickle cell disease (SCD) increases during menstruation, as do emergency department (ED) visits and hospitalizations, for many women and girls — according to a new, nationwide study led by researchers at UC San Francisco.
The study , published in JAMA Network Open , included 211 female patients from 13 SCD centers across 11 states.
Sixty-four percent of the patients reported having disease-related pain during menstruation, suggesting periods may be an important, overlooked trigger for disease-related pain. Among these patients, the pain was so severe that 44% had one to three ED visits and 19.1% had four or more ED visits, as well as higher rates of hospitalizations, over six months.
“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 pediatrician Neha Bhasin , MD, director of the Pediatric Comprehensive Sickle Cell Center at UCSF Benioff Children’s Hospital Oakland and senior author of the study.
Sickle cell disease is a genetic blood disorder that causes red blood cells to become rigid and misshapen, leading to blocked blood flow, severe pain, organ damage, and shortened life expectancy. While pain is a well-known feature of SCD, female patients experience higher rates of pain and hospitalization than male patients.
Female patients with SCD also commonly experience delayed puberty, pregnancy complications, early menopause, and abnormal uterine bleeding.
Gaps in reproductive health care
Female reproductive health treatments may help reduce bleeding and pain, yet more than 80% of the study patients were not using birth control medication. Further, nearly one in four patients said they had never heard of reproductive health treatments related to SCD.
While periods can cause severe pain in many women and girls with or without SCD, menstrual and female reproductive health histories are not a standard part of SCD care, said Bhasin. However, medical schools tend to emphasize the impact of SCD on male patients, such as how they can develop a condition called priapism that can lead to erectile dysfunction and death, she said.
“We designed the study to understand women and girls’ experiences better, and also to open up a dialogue between patients, hematologists, and reproductive health specialists about the serious pain these patients are facing,” said Bhasin.
The researchers developed a publicly accessible conversation guide on reproductive health for SCD patients and clinicians. They recommend that a menstrual history screening become a routine part of annual sickle cell care and that patients connect with reproductive health specialists — such as gynecologists, maternal-fetal medicine specialists, and genetic counselors.
The study patients came from 11 states across the country — including California, North Carolina, Michigan, Indiana, Connecticut, Louisiana, Tennessee, Pennsylvania, Delaware, Arizona, and Illinois.
Authors: Gillian Rush, BA; Rania E. Mohamed, BS; Kimberly Moffatt-Bazile, PNP, Sri Lakshmi Jamalapur, MD; Gianna G. Valenti, MD; Bindu K. Sathi, MD; Seethal Jacob, MD; Layla N. Van Doren, MD; Maria C. Velez, MD; Ugochi Ogu, MD; Gayle M. Smink, MD; Corinna L. Schultz, MD; Nicole DiVirgilio, MS; Esteban Gomez, MD; Maa-Ohui Quarmyne, MD; Jennifer Light, MD; Kalpna Gupta, PhD; Li Zhang, PhD; Elliott P. Vichinsky, MD; Ward Hagar, MD, JD; Angela Rivers, MD, PhD; Marsha Treadwell, PhD; John J. Strouse, MD, PhD; Neha Bhasin, MD.
Funding: This project was supported by University of California, San Francisco Clinical and Translational Science Institute grant UL1TR001872 from the National Center for Advancing Translational Sciences, National Institutes of Health; grant U24AT012868 from the National Institutes of Health (Gupta and Vichinsky); and a Susan Samueli Scholar Award (Gupta).
Disclosures: Please see the paper.
About UCSF Benioff Children’s Hospitals
UCSF Benioff Children’s Hospitals are among the nation’s leading pediatric specialty hospitals, according to U.S. News & World Report 2025-26 rankings. Their expertise covers virtually all pediatric conditions, including cancer, heart disease, neurological disorders, pulmonology, diabetes and endocrinology, as well as the care of critically ill newborns. The two campuses in San Francisco and Oakland are known for basic and clinical research, and for translating research into interventions for treating and preventing pediatric disease. They are part of UCSF Health, whose adult hospital ranks among the top medical centers nationwide and serves as the teaching hospital for the University of California, San Francisco, a national leader in biomedical research and graduate-level health/sciences education. Visit www.ucsfhealth.org .
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JAMA Network Open
10.1001/jamanetworkopen.2025.46345
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Role of Menstrual Bleeding Assessments in Sickle Cell Clinics
9-Dec-2025
Dr Sathi reported receiving consulting fees from Vertex Pharmaceuticals outside the submitted work. Dr Van Doren reported receiving honoraria from Pharmacosmos Therapeutics and the American Society of Hematology; speakers’ bureau fees from Sanofi, Daiichi, Pfizer, and Global Blood Therapeutics; and personal fees from Sobi outside the submitted work. Dr Ogu reported receiving personal fees from Vertex Pharmaceuticals, Fulcrum Therapeutics, Pfizer, and Novo Nordisk outside the submitted work. Dr Gomez reported receiving personal fees from Genzyme Corporation, CSL Behring, and Bayer Healthcare outside the submitted work. Dr Quarmyne reported receiving medical advisory board fees from Vertex Pharmaceuticals and Forma Therapeutics outside the submitted work. Dr Gupta reported receiving grants from Novartis outside the submitted work. Dr Strouse reported receiving scientific advisory board fees from Disc Medicine and Octapharma and consulting fees from Editas outside the submitted work. No other disclosures were reported.