Study Addresses Menstrual Pain in Sickle Cell Disease, Role of Reproductive Health Specialists

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Although more than half of female patients with sickle cell disease reported sickle cell pain associated with their menstrual cycles, only 12.5% had used ≥1 hormonal therapies within the past 3 months.

Although sickle cell pain during menstruation is very common, hormonal therapy use is minimal, even though reproductive health specialists are available in most sickle cell centers in the United States, according to a recent study presented at the 2023 American Society of Hematology (ASH) Annual Meeting and Exposition, held in San Diego, California.1

“Research suggests that sickle cell disease (SCD)-related pain associated with menstruation may be regulated with the use of hormonal therapy,” wrote lead investigator Neha Bhasin, MD, a hematologist-oncologist at University of California San Francisco Benioff Children’s Hospital, and colleagues.1 “Yet, education about safe and available contraceptive therapies is often lacking during routine sickle cell visits, leading to increased pain-related healthcare utilization and suboptimal management of menses and contraception.”

The prospective, cross-sectional study was predominantly performed by members of the Foundation for Women & Girls with Blood Disorders, Women & Girls SCD Learning Action Network (WGSCD LAN), and the Pacific Sickle Cell Regional Collaborative (PSCRC). Investigators hypothesized menstrual bleeding assessments given during clinic visits would promote more timely identification and better management of menstruation complications in this patient population. The assessment included a patient survey, provider survey, a validated menstrual bleeding questionnaire (MBQ), and the Patient Reported Outcomes Measurement Information System (PROMIS) to evaluate global health.

The patient-reported survey included questions about medication usage, education, access to, and utilization of reproductive health services, and their personal experience with sickle cell pain during menstruation. The provider survey focused on the patients’ medical data, the clinicians’ access to reproductive health services, and the management plan for each patient.

Eligible patients had reached menarche for more than 12 months, had menses in the past 12 months, and were not pregnant or breastfeeding.

A total of 56 patients with SCD from 6 institutions participated in the assessment. Most (80%, n = 45) clinicians completed the provider survey and 32 (57%) of patients completed the PROMIS surveys. The most commonly reported condition was hemoglobin SS disease (71%). Most (64%, n = 36) patients were aged ≥18 years, while 36% (n = 20) were aged 13 – 17 years. The mean MBQ score was 17.3 in adult participants and 16.1 in the adolescent cohort.

More than half (63%, n = 35) of female patients with SCD reported sickle cell pain associated with their menstrual cycles. However, only 12.5% (n = 7) mentioned using ≥1 hormonal therapies within the past 3 months, which included Depo injections (n = 5), oral contraceptives (n = 4), and/or an intrauterine device (n = 1). Additionally, 7 patients reported not knowing about hormonal therapy and aproximately 1 out of 4 (22%) patients noted using nonsteroidal anti-inflammatory drugs (NSAIDs) ≥5 days within a 2-week period.

Results from the PROMIS survey revealed only 28% of participants reported very good to excellent physical health, and less than half (47%) reported very good to excellent mental health.

The majority (n = 38/45) of clinicians were not prescribing hormonal therapies to their patients, although all had access to reproductive health specialists. After reviewing the assessments, providers noted their intent to or provision of ≥1 more of the following services: verbal education about hormonal therapy (66%), referral to a reproductive health specialist (37%), laboratory testing for iron deficiency (22.2%), and laboratory testing for bleeding disorders (14.8%)

“Menstrual bleeding assessments in the sickle cell clinic can facilitate a dialogue and recognition of reproductive health concerns among females with SCD and enhance medical attention and care from hematologists and reproductive health specialists in collaborative models of care,” investigators concluded.1


Bhasin N, Rush G, Strouse JJ, Moffatt-Bazile K, et al. Role of Menstrual Bleeding Assessments in Sickle Cell Clinics in Improving Quality of Care for Women- a Multicenter Approach. Presented at: ASH Annual Meeting and Exposition. San Diego, CA. December 9-12, 2023.