Experts urge testing for bleeding disorders in teens with heavy periods
More coordinated care, greater awareness and education also needed, they say
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- Heavy periods in teenagers can indicate underlying bleeding disorders like hemophilia rather than normal puberty.
- Risk factors include prolonged periods, frequent product changes, clotting, and iron deficiency anemia.
- Heavy menstrual bleeding in teens should prompt further evaluation for an underlying bleeding disorder, experts say
Heavy periods in teenage girls should prompt further evaluation for an underlying bleeding disorder, such as hemophilia, rather than simply being considered a normal part of adolescence, according to a call to action from an international group of experts.
Heavy menstrual bleeding, or HMB, can sometimes be the first — or even the only — sign of a bleeding disorder. Yet these conditions frequently go undiagnosed because heavy periods may be normalized, healthcare professionals may not recognize when they warrant investigation for a bleeding disorder, and referrals between primary care, gynecology, and hematology can be inconsistent.
The authors are calling for better ways of recognizing HMB and identifying its underlying causes, more coordinated care, and greater awareness and education to help adolescents with bleeding disorders receive an earlier diagnosis.
The study, “Call to action: identifying an underlying bleeding disorder in adolescents with heavy menstrual bleeding,” was published in Research and Practice in Thrombosis and Haemostasis.
‘7-2-1’ rule may help flag heavy menstrual bleeding
HMB is particularly common during adolescence. A estimated 34% to 58% of menstruating adolescents report HMB, and studies suggest that 21% to 46% of adolescents with HMB have an underlying bleeding disorder. But recognizing HMB is not always straightforward.
When an adolescent is asked, “Are your periods heavy?” the answer may simply be “no,” the international team of researchers noted. Some teenagers may feel uncomfortable talking about menstruation, while others may compare their periods with those of relatives who also have unusually heavy bleeding — potentially because an inherited bleeding disorder has gone undiagnosed in the family.
Rather than relying on whether a teenager describes her periods as “heavy,” the authors recommend healthcare professionals ask more detailed questions — such as how long bleeding lasts, how often menstrual products need changing, whether blood soaks through clothes or bedsheets, and whether periods interfere with school, sports, or other activities.
A simple “7-2-1” rule may help flag HMB. It refers to periods lasting more than seven days, needing to change menstrual products more frequently than every two hours, or passing clots larger than 1 inch. More recently, HMB has been defined as excessive menstrual bleeding that interferes with a person’s physical, social, emotional, or everyday life.
Recognizing HMB matters because it can be the first, sometimes even the only, sign of an underlying bleeding disorder. Repeated heavy bleeding can also deplete the body’s iron stores, causing iron deficiency and, when severe enough, iron deficiency anemia, in which the body cannot make enough healthy red blood cells to adequately carry oxygen.
The authors therefore emphasized that recognizing HMB should be accompanied by evaluation and prompt treatment of iron deficiency and iron deficiency anemia.
Relatively few adolescents with HMB are evaluated for bleeding disorder
Once HMB is recognized, the next step is determining its underlying cause.
Heavy periods during adolescence are often attributed to anovulatory cycles, when an egg is not released because the hormonal system controlling menstruation is still maturing. Although anovulation is the most common cause of HMB in adolescents, bleeding disorders are another major cause, and the two can occur together. Assuming anovulation is the sole explanation may therefore delay the diagnosis of a bleeding disorder.
Certain features should raise suspicion. These include HMB beginning with the first period, continuing beyond the first two years after periods begin, remaining poorly controlled despite hormonal therapies, or becoming severe enough to require hospitalization or a blood transfusion. Iron deficiency anemia and a personal or family history of unusual bleeding are other signs.
When a bleeding disorder is suspected, initial testing can include a blood count, iron studies, and clotting tests, including testing for von Willebrand disease (VWD), the most common bleeding disorder. More specialized testing should be overseen by a hematologist, preferably at a hemophilia treatment center.
Despite these warning signs, relatively few adolescents with HMB are evaluated for an underlying bleeding disorder. Data cited by the team showed that only about 10.6% were screened for VWD, while 41.2% had a blood count to screen for anemia, 14.2% underwent iron studies, and just 3.3% were referred to a hematologist.
Collective efforts of national and international organizations are critical to reframing HMB in [bleeding disorders] from an underrecognized and often normalized symptom of puberty to a clinical priority for providers, ensuring meaningful and actionable health outcomes.
According to researchers, clotting factor treatments are not widely used to prevent HMB in women with bleeding disorders. The authors noted that DDAVP (desmopressin acetate) has potential for use in HMB but has been underused in mild-to-moderate hemophilia A, despite its potential to control bleeding. Newer formulations, including a new intranasal version, may help expand access to this treatment.
The authors argue that closing these gaps requires coordinated care. Primary care providers can recognize HMB, look for iron deficiency and other bleeding symptoms, begin initial testing, and make appropriate referrals. Gynecology providers can investigate reproductive causes while ensuring a possible bleeding disorder is not overlooked, while hematologists can perform specialized testing and establish or rule out a bleeding disorder.
Better education is also central to improving recognition. Training healthcare professionals to recognize HMB as a potential sign of a bleeding disorder — alongside greater awareness among adolescents, families, teachers, coaches, and school nurses — could help affected teenagers reach appropriate care sooner.
“Collective efforts of national and international organizations are critical to reframing HMB in [bleeding disorders] from an underrecognized and often normalized symptom of puberty to a
clinical priority for providers, ensuring meaningful and actionable health outcomes,” the researchers wrote.
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