Menstrual cycles can be heavy, painful for young women with SCD

Survey study of teens and young adults in US finds need for more routine care

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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A person seated against pillows and clearly in pain crosses both arms against the belly.

Heavier menstrual bleeding and pain during menstrual periods appear to be prevalent among adolescents and young women with sickle cell disease (SCD), affecting their quality of life, but few of these patients use hormonal therapies to help regulate their cycles, a single-site U.S. survey study reported.

Knowledge of what is considered normal menstruation also “varied widely” among the study’s 48 participants, its scientists noted.

“Strategies that incorporate menstrual health assessment into routine medical care in this population would help address this important area of pediatric health,” they wrote.

The research article, “Assessment of menstrual health in adolescent and young adults with sickle cell disease,” published in the journal Pediatric Blood & Cancer.

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Bleeding complications, including heavy menstrual bleeding, have been reported in adults with SCD, as well as in an estimated 30% to 40% of all women of childbearing ages in the U.S. Researchers roughly defined heavy menstrual bleeding as “eight or more saturated fully pads a day, and greater than or equal to eight days of bleeding.”

But “whether adolescent and young adults with SCD are similarly affected by [heavy menstrual bleeding] as the general adolescent/young adult population or adults with SCD has not been well described,” they wrote.

Scientists led by those at Emory University conducted an electronic survey study of 48 menstruating females, ages 12 to 21, with a diagnosis of SCD and being followed at a blood disorder center in Atlanta.

The five-part survey was designed to collect demographic information, assess menstrual health knowledge, and to rate and gather data on menstrual bleeding medications. It also included two validated instruments of patient-reported bleeding: the Menstrual Bleeding Questionnaire (MBQ) and the Self-administered Bleeding Assessment Tool (Self-BAT).

Participants had a mean age of 16 at study enrollment, and their first menstruation was at a mean age of 13.

Most of these young women (79%) had what is considered SCD’s most severe form, with two faulty gene copies encoding hemoglobin S — a defective form of the protein responsible for transporting oxygen in red blood cells, and which causes them to acquire a sickle-like shape.

About half were taking hydroxyurea at study enrollment, a treatment to lower the frequency of vaso-occlusive crises and patients’ need for blood transfusions.

Parents and guardians were the source of menstrual health information for most of these patients (88%), followed by healthcare providers (29%), schoolteachers or programs (23%), and social media or the internet (27%).

61% of 48 respondents reported moderate or severe pain with cycles

In true or false questions regarding the established four characteristics of normal menstruation — average age for general population, normal time between cycles, normal duration of a cycle, and typical number of sanitary products used on heaviest day — “only 29% … were able to correctly identify all four criteria,” the scientists noted.

According to the MBQ questionnaire, which assesses quality of life related to menstrual bleeding over the course of one month, about a third of participants (29%) reported heavy or very heavy menstrual flow, with 50% reporting a moderate menstrual flow. Almost all (96%) indicated that their cycle lasted less than one week.

A majority, 61%, reported having moderate or severe pain.

Still, a minority, 19%, reported using or having used an hormonal therapy to regulate menstruation, mostly synthetic progesterone injections or pills.  Most also did not use any medication for pain associated with menstruation, and those who did mostly relied on ibuprofen (19%).

Questions for the Self-BAT, which evaluates bleeding symptoms over a person’s lifetime, found that 42% of these young patients had a history of heavy menstrual bleeding.

“These results support the conclusion that a substantial portion of adolescents and young adults with SCD experience [heavy menstrual bleeding] at some point in time similar to the general population of adolescents,” and support regular monitoring as part of routine care, the researchers wrote.

Patients reporting a history of heavy menstrual bleeding had significantly higher MBQ and Self-BAT scores. Patients reporting severe pain had a significantly higher MBQ score, suggesting a poorer quality of life.

No differences were seen between either set of scores in terms of patients’ age or hydroxyurea use.

“The study further highlights the critical need for improved patient and provider education, increased research efforts, and implementation of strategies that address the overlooked menstrual health needs in SCD,” the researchers wrote.