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Effects of Puberty on Girls with a Bleeding Disorder

For a girl, getting her first period is a physical milestone and a sign of becoming a woman. It can also be confusing and scary, particularly if she has heavy menstrual bleeding (called menorrhagia) due to a bleeding disorder. Some women first notice the symptoms of a bleeding disorder because of heavy or abnormal bleeding during their menstrual periods or after childbirth.

If not diagnosed and treated properly bleeding disorders in women can be dangerous. Early and correct diagnosis can help prevent complications, such as unexpected or prolonged bleeding after surgery, accidents, dental procedures, or childbirth, and avoid an unnecessary procedure like a hysterectomy. Because bleeding disorders like von Willebrand Disease (VWD) are mainly inherited, other family members should consider getting checked.

For more information, go to von Willebrand Disease.

Signs that may indicate heavy menstrual bleeding:

  • Bleeding for longer than seven days, from the time the period begins until the time it ends.
  • Flooding or gushing blood that limits daily activities, such as social activities, school, or exercise.
  • Passing blood clots that are bigger than a quarter.
  • Changing a tampon and/or pad every two hours or less on the heaviest day.

You may need to monitor your daughter for any signs of anemia due to heavy periods.

Signs of anemia:

  • Weakness
  • Tiredness (called lethargy)
  • Paleness (called pallor)

The Emotional Impact of Heavy Periods

Heavy menstrual bleeding (called menorrhagia) can be extremely stressful and can negatively affect a girl's quality of life. Long, heavy periods can interfere with physical activity, sports, social events, and sexual activity. They can be particularly stressful for girls who worry that they cannot control the bleeding while in public. Teenaged girls with heavy menstrual periods may feel excluded or isolated.

Speaking openly about menstruation can be uncomfortable for both parents and children. However, these conversations are important and can help girls feel independent and confident.

Suggestions to help your daughter successfully manage her heavy periods:

  • Check with your local hemophilia chapter or Hemophilia Treatment Center (HTC) to learn about special programs for girls with bleeding disorders. Some chapters offer female-only events where girls can bond, learn about more their condition, and get tips on how to deal with heavy periods.
  • Ask for handouts and materials from your local hemophilia chapter or HTC.
  • It may help to let your daughter know what is considered normal menstrual bleeding:
    • The number of pads/tampons typically used.
    • The number of days a normal period lasts.
    • The amount of blood flow to expect.
    • The time and amount of menstrual bleeding for a girl with a bleeding disorder like von Willebrand Disease (VWD).
For more information, go to What's a Normal Period?
  • Discuss any anxiety she may have about her heavy periods, particularly if she's grown up watching her mom, sister, or other relative suffer with heavy bleeding.
    • If you also have a bleeding disorder, you may want to tell your daughter about your experiences and share your management strategies with her.
  • Prepare your daughter for her monthly periods.
    • Get her a personal supply of feminine hygiene products.
      • Buy a cute purse for her to carry these products.
    • Help her walk through her day and problem-solve how she'll handle needing to change hygiene protection several times during the day.
    • Talk about how to handle accidents.
    • Encourage her to change tampons regularly.
    • Ask her to keep a record of the number of pads or tampons she uses.
      • This will give her physician an idea of how much bleeding she is having.
  • Speak with your daughter's school staff about her bleeding disorder. They should be able to help facilitate bathroom breaks and keeping a change of clothes in her locker.
For more information, go to Engaging School Faculty and Staff.
  • Talk about menstrual cramping.
    • Don't take aspirin or certain nonsteroidal anti-inflammatory drugs (NSAIDs), including ibuprofen and naproxen, because they interfere with clotting.
    • Discuss alternative pain relief options with the HTC healthcare providers or gynecologist. Simple measures, such as taking a warm bath or placing a hot water bottle or heating pad on the abdomen, often help to relieve discomfort.
  • Encourage your daughter to exercise. Periods shouldn't get in the way of being active and participating in sports. Exercise has been shown to relieve cramps. Aerobic exercise releases beta-endorphins, which are the body's own pain relievers.
  • Include your daughter in consultations with the hematologist and HTC healthcare providers about any difficulties she might have and how she can prepare for heavy menstrual bleeding. A gynecologist who has experience treating bleeding disorders should be able to help.
Parents and health care providers should let girls know that heavy periods can be managed.

Body Image and Self-Esteem

Body image becomes very important during preadolescence. Preteens and teens begin to pay more and more attention to their appearance and they often compare themselves to their peers. They may wonder how their bleeding disorder affects their physical appearance, function, and mobility. For a developing young woman with a bleeding disorder, excessive menstrual bleeding can have a serious psychological impact on her body image and self-esteem.

If a bleeding disorder affects their appearance or attracts unwanted attention, children may be more likely to face emotional struggles. They may be self-conscious about bruises, needle marks, or swollen joints. Needing crutches or a wheelchair can worsen feelings of being different.

Remind your child that she is a normal human being who just happens to have a bleeding disorder.

Help your child focus on strengths, not on any physical limitations.

Here are some tips on how to help your child build self-esteem:

  • Encourage your child to express feelings about her bleeding disorder and its treatment.
  • Encourage safe physical activity.
    • Participation in physical activities and sports is an important way of encouraging independence, promoting teamwork, and enhancing self-esteem and a healthy body image.
  • Help your child
    • Identify personal characteristics and abilities that enhance self-esteem.
    • Cope with negative reactions from others.
    • View the bleeding disorder as only one aspect of her body image.