Von Willebrand Disease in Women: How Is It Treated?

Von Willebrand disease affects men and women in roughly equal numbers, about 1% of the U.S. population. Women, however, are far more likely to notice it, because every menstrual period is a monthly test of the body’s ability to stop bleeding. Heavy menstrual bleeding is common in general, and in some women, the reason is VWD.

Do you or someone you know have heavy or prolonged periods without a clear explanation? Abnormal uterine bleeding has many causes, and VWD is one that is frequently missed. Here is what you should know.

What is von Willebrand disease?

Our blood contains proteins that help it clot. One of them is von Willebrand factor (VWF). When a person has too little VWF, or their VWF does not work properly, they have von Willebrand disease. It is usually inherited, and it weakens the blood’s natural ability to form a clot.

You may remember from school that platelets clump together to stop bleeding. VWF acts like glue: it helps platelets stick to the injured blood vessel and to each other. It also carries and protects factor VIII, another clotting protein.

Is VWD more common in women?

No. VWD is the most common inherited bleeding disorder, affecting an estimated 0.6% to 1.3% of people, and it is inherited equally by men and women. It is more often noticed in women because of menstruation, childbirth, and gynecologic procedures, each of which challenges the clotting system.

VWF levels also change with hormones. Estrogen tends to raise VWF levels, which is one reason estrogen-containing birth control can help. Levels are often lowest early in the menstrual cycle, right when bleeding occurs. Many women with mild VWD therefore have their most noticeable bleeding during their periods.

How VWD shows up in women

For many women with VWD, the most noticeable symptom is heavy menstrual bleeding. It is one of the most common signs of the condition. Warning signs include:

• Changing a pad or tampon every one to two hours, or more often
• Periods lasting longer than seven days
• Passing clots the size of a quarter or larger
• Heavy periods since your very first period
• Iron deficiency or anemia

Beyond periods, women with VWD may have frequent nosebleeds, bleeding gums, bruising from minor bumps, prolonged bleeding after dental work or surgery, and heavier bleeding after childbirth.

Diagnosing von Willebrand disease

If these symptoms sound familiar, see a clinician. An early diagnosis lets you manage symptoms, prevent iron deficiency, and plan safely for surgery and pregnancy.

Your clinician will ask about your personal and family history of bleeding and may use a structured bleeding questionnaire. Blood tests usually include:

• VWF antigen, which measures how much von Willebrand factor is in your blood
• VWF activity (such as the ristocetin cofactor or GPIb-binding assay), which measures how well your VWF helps platelets stick
• Factor VIII activity, since VWF protects factor VIII
• Sometimes a collagen binding assay and other tests that help identify the type of VWD

Stress, exercise, inflammation, pregnancy, and estrogen can raise VWF levels temporarily. Testing may need to be repeated, and it is often done with a hematologist.

How is VWD treated?

Treatment depends on the type of VWD and the bleeding problem being treated. For heavy periods, options include:

• Hormonal treatment: the levonorgestrel IUD or combined hormonal birth control, which reduce menstrual bleeding
• Tranexamic acid: a non-hormonal pill taken during your period that helps clots hold
• Desmopressin (DDAVP): a medicine that releases the body’s own stored VWF, used for some types of VWD under a hematologist’s direction
• VWF concentrates: replacement factor given by infusion for more severe bleeding or before surgery
• Iron: to replace stores lost through heavy bleeding

Avoid aspirin and NSAIDs such as ibuprofen and naproxen, which interfere with platelets, unless your hematologist says otherwise. If you are planning surgery, dental work, or pregnancy, your care team should create a bleeding plan in advance.

Conclusion

VWD can cause serious symptoms, but it is very manageable. With the right diagnosis and treatment, women with VWD lead active and full lives.

Be proactive about your health. If you have heavy periods, prolonged bleeding after injuries or procedures, or easy bruising, talk to a clinician and ask whether you should be tested.