Von Willebrand Disease in Women
Von Willebrand Disease in Women

Considerations for women with von Willebrand disease

Von Willebrand disease (VWD) occurs in men and women equally, but it’s often viewed as disproportionately affecting females for a number of reasons. The most likely cause is that women are more apt to experience symptoms due to increased or prolonged bleeding during menstrual periods (menorrhagia or heavy menstrual bleeding), as well as during pregnancy and childbirth.1

“Within the last few years, education around VWD, especially for women, has really come to the forefront. It’s important to know that not just men experience bleeding disorders.” — Lisa, Takeda clinical specialist

Von Willebrand disease and menstrual bleeding

Some women don’t notice symptoms of a bleeding disorder until they enter puberty and start getting their menstrual periods.2 Menstrual bleeding can be especially heavy when a girl first starts having periods. If there is a family history of VWD or other bleeding disorders, or it’s already known that a girl has the disorder, it’s recommended that she be closely followed by a medical team during puberty, including a pediatrician, gynecologist, and a hematologist with experience in treating bleeding disorders.3

It may also be helpful to inform her of what is considered “normal” menstrual bleeding, which includes2:

  • The number of days menstrual cycles typically last
  • The number of pads and tampons typically used
  • The amount of blood flow to expect
  • The time and amount of menstrual bleeding for a girl with VWD or another bleeding disorder
Signs of heavy menstrual bleeding
    Some signs of heavy menstrual bleeding include2:
  • Bleeding for longer than 7 days
  • Changing a tampon or pad every 2 hours or fewer on the heaviest day
  • Flooding or gushing blood that limits daily activities
  • Passing blood clots larger than a quarter

Heavy menstrual bleeding may lead to anemia. Signs of anemia to watch for include weakness, tiredness, and paleness.2 If a woman notices any of these symptoms, she should contact her healthcare provider.

For women with VWD who experience heavy menstrual bleeding, oral contraceptives may help.4 Additionally, a birth control pill may raise the level of von Willebrand factor (VWF) in the blood of women with Type 1 VWD. While oral contraceptives may not improve VWF levels for women with Type 2 or Type 3 VWD, they may be helpful in regulating periods and reducing blood flow.3

VWD and pregnancy

Having VWD does not typically affect a woman’s ability to get pregnant. In fact, women with VWD may actually experience fewer bleeding problems during pregnancy. The high hormone levels associated with pregnancy stimulate the production of blood-clotting proteins, causing levels of VWF and factor VIII to rise closer to normal in women with Type 1 VWD. Women with Types 2 and 3 VWD can also have children. However, more precautions may be necessary.3

Women with VWD, however, can have heavy bleeding for an extended period of time after delivery when VWF levels return to their normal levels. In fact, postpartum bleeding is more common in women with VWD than in the general population, which may mean a woman would need to be more closely monitored for bleeding in the hours, days, and weeks after delivering. Breastfeeding can keep VWF levels raised after childbirth in women with Type 1 VWD and therefore help control bleeding after childbirth.3

If a woman with VWD feels her postpartum bleeding is excessive or long in duration, she should immediately let her obstetrician or hematologist know.3

VWD and menopause

The body’s erratic regulation of hormones during menopause can actually cause heavy menstrual bleeding. Yet, for other women, levels of VWF may actually rise and help reduce bleeding problems related to menses. Regular consultations with a gynecologist can help women with VWD manage any additional problems that may arise as they enter menopause.5

Multiple ways to treat VWD

How von Willebrand disease (VWD) is treated depends on the type and severity.

Learn more

What if it runs in the family?

Genetic tests and counseling can help your family prepare for the future.

Plan ahead

Healthy living can help

Find tips for maintaining a healthy weight, managing pain, and more.

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  1. Von Willebrand disease. National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/von-willebrand-disease/. Accessed August 20, 2019.
  2. Effects of puberty on girls with a bleeding disorder. Steps for Living website. https://stepsforliving.hemophilia.org/next-step/maintaining-a-healthy-body/growing-up-puberty/effects-of-puberty-on-girls-with-a-bleeding-disorder. Accessed August 20, 2019.
  3. Canadian Hemophilia Society. All about von Willebrand disease…for people with von Willebrand disease and their families. http://www.hemophilia.ca/files/AllAboutVWDRevisedEng.pdf. Accessed August 20, 2019.
  4. Committee on Adolescent Health Care; Committee on Gynecologic Practice. Committee opinion no. 580: von Willebrand disease in women. Obstet Gynecol. 2013;122(6):1368-1373.
  5. Haemophilia Foundation Australia. A guide for people living with von Willebrand disorder. https://www.haemophilia.org.au/HFA/media/Documents/von%20Willebrand%20Disorder/A-guide-for-people-living-with-von-Willebrand-disorder.pdf. Accessed August 20, 2019.

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