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 women, likely because of symptoms related to heavy menstrual bleeding.1

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Von Willebrand disease and menstrual bleeding

Some women don’t notice symptoms of a bleeding disorder until they begin puberty and start getting their menstrual periods.2  If there is a family history of VWD or other bleeding disorders, it’s recommended that you be monitored during puberty by a pediatrician, gynecologist, and a hematologist with experience in treating bleeding disorders.3

It can also be helpful to talk about what’s considered to be “heavy" menstrual bleeding1:

  • Bleeding for longer than 7 days
  • Bleeding through a tampon or pad every 1 or 2 hours
  • Flooding or gushing blood, or passing blood clots larger than a quarter
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Heavy menstrual bleeding may lead to anemia. Signs of anemia to watch for include weakness, tiredness, and paleness.2  If you notice any of these symptoms, be sure to contact your doctor and get checked out.

Get the VWD bleeding tracker

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 Community Education Specialist

How oral contraceptives may help

Oral contraceptives may be an effective treatment for women with VWD who experience heavy menstrual bleeding.3 A birth control pill may raise the level of von Willebrand factor (VWF) in the blood of women with type 1 VWD. And 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

Overview of oral contraceptives

VWD and pregnancy3

Having von Willebrand disease does not typically affect a woman’s ability to get pregnant. In fact, women with VWD may experience fewer bleeding problems during pregnancy. When considering pregnancy, it’s important to note:

  • Women with type 1 VWD may see near normal levels of VWF and factor VIII caused by high hormone levels that stimulate the production of blood clotting proteins
  • Women with type 2 or 3 VWD can also have children. However, additional precautions may be necessary
  • After delivery, VWF levels return to their normal levels which can result in women with VWD experiencing heavy bleeding for an extended period of time after delivery. 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.

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

Pregnancy icon.

VWD and menopause5

Before menopause (that is, the cessation of menstrual bleeding), most women transition through perimenopause, and may experience physical symptoms such as hot flashes and cold sweats, and perhaps acne and weight gain, along with nonphysical symptoms like irritability and disrupted sleep.

Perimenopause is often difficult, and it can be even more so for women with bleeding disorders, as menstrual bleeding becomes even more irregular and unpredictable.

Most women have fewer and lighter menstrual periods during perimenopause, but women with bleeding disorders can experience the opposite.

This means that you may need to consult your doctor and consider a combination of treatment and lifestyle changes.

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  1. Centers for Disease Control and Prevention. What is von Willebrand Disease? https://www.cdc.gov/ncbddd/vwd/facts.html. Accessed February 12, 2023.
  2. National Hemophilia Foundation. Effects of puberty on girls with a bleeding disorder. https://stepsforliving.hemophilia.org/next-step/maintaining-a-healthy-body/growing-up-puberty/effects-of-puberty-on-girls-with-a-bleeding-disorder. Accessed February 12, 2022.
  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 February 12, 2023.
  4. Dasharathy SS, Mumford SL, Pollack AZ, et al. Menstrual bleeding patterns among regularly menstruating women. Am J Epidemiol. 2012;175(6):536-545. doi:10.1093/aje/kwr356
  5. Thomas K. Transitioning through menopause. HemAware. April 16, 2012. https://hemaware.org/transitioning-through-menopause. Accessed February 12, 2023.