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


Understanding the clinical features of menstruation in women with SCD and their reproductive health concerns is important in improving their overall care. To our knowledge, this is the first study in >20 years to describe menstrual characteristics in women with SCD and QOL associated with menstruation. Previous reports of menstrual characteristics in women with SCD were published before the emergence of disease-modifying therapies (hydroxyurea and regular blood transfusions), had small sample sizes, had narrow age ranges that did not include adolescents, or only recruited those with HbSS. Furthermore, new forms of contraception have become available since 1995, including the contraceptive patch and intrauterine devices.[14] Patterns of contraceptive use have changed through the years, with the 2012 National Health Statistics Report showing that compared with 1995, from 2006 to 2010, use of the combined oral contraceptive pill by non-Hispanic black women decreased by 6%, whereas intrauterine device use increased.[6] Women with SCD are living longer into adulthood, which places a greater emphasis on understanding their unique reproductive health issues relative to the general population.

Women with SCD have a similar prevalence of prolonged menstrual bleeding compared with African American women without SCD. In a 2011 cross-sectional study involving 184 African American women, 9.4% reported experiencing menstrual bleeding >7 days.[15] In our cohort of 103 women with SCD, 12.7% reported experiencing menstrual bleeding >7 days. A 1985 case-control study of 48 women with SCD and 80 age- and race-matched controls suggested that women with SCD have slightly longer menstrual cycles (4.9 vs 4.3 days, P < 0.006) and use 4.1 menstrual products per day compared with 3.7 in the controls.[5] A 6-month prospective observational study in women with HbSS found that the mean duration of menstruation was 4.69 days;[4] however, all 42 women were between 22 and 30 years of age. Similarly, we report that the majority of women have menstrual periods lasting <7 days and use ≤4 menstrual products per day. Our data support prior studies showing that the majority of women with SCD do not experience prolonged menstrual periods. Nonetheless, prospective studies of women through their menstrual cycles will allow a better understanding of the degree of menstrual bleeding that they experience.

Our study elucidates patterns of contraceptive use not presently described in adolescents and adults with SCD. Compared with studies from >30 years ago, we found that women with SCD are more sexually active and using contraception more often than previously reported, although at a slightly lower rate than the general population. From 2006 to 2010, 54% of African American women reported using a method of contraception.[6] We report that 47.6% of our cohort was sexually active and 48.5% were using some form of contraception, with the most frequent being use of condoms and depot medroxyprogesterone acetate injections. This trend may reflect increased awareness among healthcare providers about the thrombotic risk associated with estrogen-based contraception in women with SCD, which is an inherited thrombophilia.[8] In contrast, a prior study documented that the most frequently used contraceptive method in women with SCD was a "birth control pill," although it did not specify whether this was a combined estrogen-progesterone or progestin-only pill.[16]

An important finding from this study is that menstrual history has a significant impact on the lives of women with SCD. Our results expand on prior studies that documented diminished QOL of individuals with SCD. A cross-sectional study (n = 162) of children aged 5 to 18 years with SCD who were given the Pediatric Quality of Life Inventory 4.0 questionnaire were shown to have poorer QOL in regard to physical, emotional, social, and school capacities compared with age-, race- and socioeconomic status-matched children without SCD (P < 0.0001).[17] In adults with SCD, health-related QOL also is lower, with individuals taking chronic antidepressants and opioids having decreased QOL scores;[18] however, the impact of reproductive health challenges on QOL in women with SCD has yet to be reported. Here, women with SCD with both dysmenorrhea and prolonged menstrual bleeding were at increased risk for poor QOL compared with those with neither. In women with both dysmenorrhea and prolonged menstrual bleeding, QOL was poorest during menstruation. As such, the impact that features of menstrual cycles have on physical and emotional well-being in women with SCD highlights the necessity of appropriately managing these underlying factors.