CDC Expert Commentary

Heavy Menstrual Bleeding? How to Spot von Willebrand Disease

Sally Owens McAlister, BSN


June 21, 2011

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Hello. As part of the CDC Expert Video Commentary on Medscape, I would like to speak with you today about von Willebrand disease, a bleeding disorder in which the blood does not clot properly. It is the most common bleeding disorder in the United States, affecting up to 1% of the population. However, most people who have von Willebrand disease are not aware they have it.

Blood contains proteins that help to stop bleeding. Von Willebrand disease can occur as a result of a defect or a deficiency of von Willebrand factor that prevents the platelets from becoming sticky and prevents the formation of a platelet plug to stop bleeding. Von Willebrand disease is a genetic disorder that can be passed down from either parent to the child.

Although von Willebrand disease occurs equally among men and women, women are more likely to notice the symptoms because of heavy or abnormal bleeding during their menstrual periods and after childbirth. Heavy menstrual periods are a common complaint among women. About 15% of all referrals to gynecologists and 100,000 hysterectomies per year are for heavy menstrual bleeding. Up to 20% of women with heavy menstrual bleeding are estimated to have von Willebrand disease and could be treated to lessen their symptoms.

The most common symptom is heavy menstrual periods, which are defined as

  • Bleeding for more than 7 days from the time bleeding begins before it completely stops;

  • Flowing or gushing of blood such that it limits daily activities such as housework, exercise, or social activities;

  • Passing clots that are bigger than a quarter, or

  • Changing a tampon or pad, possibly even both, every hour or more often on heaviest day(s).

Other symptoms and signs include a past diagnosis of anemia or decreased iron levels; or heavy bleeding as a result of:

  • Dental or other surgery, or childbirth;

  • Frequent nose bleeds (lasting longer than 10 minutes);

  • Bleeding from cuts or injuries (lasting longer than 5 minutes); or

  • Easy bruising (occurring weekly and presenting as raised bruises or bruises larger than a quarter in size or both).

A family history of a bleeding disorder is also an indication of von Willebrand disease. Even 1 of these signs or symptoms can suggest von Willebrand Disease. A daily journal to note the amount of menstrual bleeding over several cycles can help determine if bleeding is abnormal.

In addition to heavy menstrual bleeding, these women might experience miscarriage or postpartum bleeding, or undergo unnecessary surgical procedures such as a hysterectomy. They are prone to miss work or school and experience activity limitations, all of which can decrease their quality of life.

The American College of Obstetricians and Gynecologists has made recommendations to screen women with heavy menstrual bleeding for von Willebrand disease. Among those who should be tested are:

  • Adolescent girls with severe menstrual bleeding (and they should be tested before hormone therapy is prescribed);

  • Adult women with heavy menstrual bleeding that cannot be explained by other causes; and

  • Women who are about to have hysterectomies for heavy menstrual bleeding.

A diagnosis of von Willebrand disease can be determined by laboratory tests performed in special coagulation laboratories located in hemophilia treatment centers throughout the United States. A CDC Website on Blood Disorders can be consulted to locate a testing center throughout the United States.

Blood tests might need to be repeated because levels of clotting factors rise and fall during the menstrual cycle. Also, certain medications that can affect clotting might need to be discontinued before blood tests can be performed. The National Institutes of Health has published guidelines that outline a testing algorithm for diagnosis of von Willebrand disease. The testing algorithm can be found on the Website for the National Institutes of Health's National Heart, Lung and Blood Institute.

Treatment of bleeding signs and symptoms is determined by the type and severity of disease, so diagnosis is important. For minor bleeds, treatment might not be needed. Hormone therapy can reduce heavy menstrual bleeding but might not be effective for all women with von Willebrand disease. During the first few days of the menstrual cycle, menstrual bleeding can be reduced by administering a nasal spray that causes a release of von Willebrand factor already stored in the body.

Other medications might be given to help prevent clots from breaking down and, for severe disease, replacement of the missing clotting factor can be administered intravenously prior to surgery or at the time of a serious bleeding episode.

Many women suffer from heavy menstrual bleeding due to an underlying bleeding disorder. With proper diagnosis and treatment, menstrual bleeding can be reduced and quality of life can be restored. For more information, visit the CDC Website.

Web Resources

CDC information on blood disorders

Treatment centers

Testing algorithm

Sally Owens McAlister has been working in the bleeding disorder community for over 30 years. She began her career in hemophilia as a nurse coordinator for the University of Michigan Hemophilia Treatment Center in Ann Arbor in 1977 when comprehensive care was first being developed. She was the Executive Director for the Hemophilia Foundation of Michigan for almost 20 years and served as the Regional Director coordinating the hemophilia treatment center network in Michigan, Indiana, and Ohio. She joined the CDC in June 1996 to coordinate the newly formed national Hemophilia Treatment Center (HTC) program aimed at preventing complications of hemophilia and other bleeding disorders and served as the Director of the HTC Program for CDC from 1996-2008.

Ms. McAlister has been instrumental in developing programs for thrombosis, thalassemia, and Diamond Blackfan anemia and currently directs the Division's Prevention Research Team that administers public health translation programs for people with bleeding and clotting disorders. She has served on a number of working groups for the National Hemophilia Foundation (NHF), World Federation of Hemophilia (WFH), and the National Institutes of Health (NIH) and has received numerous service awards as well as a past title of "Humanitarian of the Year" from the National Hemophilia Foundation for her work in hemophilia.


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