Contraceptive Methods and the Impact of Menstruation on Daily Functioning in Women With Sickle Cell Disease

Melissa E. Day, BS; Sarah-Jo Stimpson, MD; Mark Rodeghier, PhD; Djamila Ghafuri, MBBS; Michael Callaghan, MD; Ahmar Urooj Zaidi, MD; Bryan Hannan, MS; Adetola Kassim, MD, MS; Andra H. James, MD, MPH; Michael R. DeBaun, MD, MPH; Deva Sharma, MD, MS


South Med J. 2019;112(3):174-179. 

In This Article

Abstract and Introduction


Objectives: Women with sickle cell disease (SCD) are living longer as a result of advances in the care of their underlying disease. With the population growing of women living with SCD, reproductive health issues in this population have become an emphasized area of medical care. We sought to describe current patterns of contraception use, menstruation, and quality-of-life (QOL) measures in women with SCD.

Methods: Using a cross-sectional study design, we administered paper surveys at two academic medical centers to women aged 10 to 55 years with SCD to capture current contraceptive use, characteristics of menstrual cycles, and QOL metrics.

Results: Of the 103 women who participated, 12.7% (13/102) experienced a duration of menses >7 days (defined here as prolonged menstrual bleeding). Approximately half of women (51.5%, 53/103) used some form of contraception, with depot medroxyprogesterone acetate injections and condoms being the most common. During their last menstrual periods, women with both dysmenorrhea and prolonged menstrual bleeding (6.9%, 7/102) were more likely to experience more days of poor QOL, with more nights with sleep disturbance (P = 0.001) and more days with trouble taking care of themselves (P = 0.003), as well as being unable to do things they previously enjoyed (P = 0.001), compared with those with neither phenomenon (28.2%, 29/103).

Conclusions: Dysmenorrhea and prolonged menstrual bleeding negatively affect the QOL of women with SCD. Menstrual histories and preventive measures for menstruation-related morbidity should be incorporated into routine evaluations of women with SCD.


Sickle cell disease (SCD) is the most common inherited monogenic blood disorder, affecting 1 in 400 African Americans born in the United States.[1] Before the use of disease-modifying therapies, the average life expectancy for an individual with SCD in the 1970s was <20 years of age.[2] The largest multicenter prospective cohort study of SCD (n = 3764) in the 1990s, completed after the introduction of penicillin prophylaxis and hydroxyurea therapy, however, demonstrated that 50% of individuals with SCD live beyond the fifth decade.[3] As the overall survival of women with SCD continues to increase, reproductive health issues, including menstruation-related morbidity and preferences for contraceptive use, will become increasingly important as management shifts toward improving their quality of life (QOL).

Previous studies attempting to define clinical characteristics of menstruation and contraceptive use in women with SCD are either outdated or limited in scope, and none focus on QOL associated with menstruation. Studies describing menstruation in women with SCD involved data collected >15 years ago, with the most recent study including only women with SCD aged 13 to 21 years.[4] More comprehensive studies including multiple SCD phenotypes and ages were completed >30 years ago.[5] Although changes in contraceptive use have been reported in African Americans during the past 10 to 15 years,[6] similar findings have not been discussed in the SCD literature. No previous studies have investigated clinical differences in menstrual characteristics in women with different SCD phenotypes. Understanding contraceptive use in women with SCD is particularly important due to an increased risk of pregnancy complications in this population, with up to 20% experiencing acute vaso-occlusive pain episodes and 11% to 17% experiencing premature birth and preeclampsia, respectively.[7] Moreover, SCD is an inherited thrombophilia,[8] necessitating a better understanding of contraceptive use in this patient population and its relation to thrombotic risk. In addition, limited data describe QOL associated with menstruation in women with SCD, despite reports of up to 37% of women experiencing severe acute vaso-occlusive pain episodes occurring with their menstrual periods.[4]

In a multicenter cross-sectional study, we sought to describe menstrual characteristics, contraceptive use, and QOL in a sample of young women with SCD.