Michigan attorney Mindy Buurma, 36, is the mother of four children under age 10. She has type III von Willebrand disease (VWD), and her two daughters (ages 5 and 3) have type I. She plans to tell her daughters about menstruation when they are 8 or 9. “I want to make sure the information is coming from us and the doctors rather than from school or other children,” she says.
Buurma has the right approach, say experts. Although girls can start their periods at 8 years old, the American College of Obstetricians and Gynecology (ACOG) says 90% experience their first period, or menarche, between 12 and 14. For young women with bleeding disorders, their menstrual flows can be especially heavy, long and painful, a condition called menorrhagia. Typically, their periods continue longer than seven days—the top range of what is considered normal.
Impending menstruation can cause nervousness in young women. Girls and teens worry the blood will leak, staining their clothes, says Danna Merritt, MSW, LMSW, a social worker at the hemophilia treatment center at the Children’s Hospital of Michigan in Detroit. That’s why it’s important to prepare young women early on. They need to know what to expect and what to do if they later have a heavy flow, severe cramps or other complications.
Starting the Discussion
Mothers should have ongoing discussions about puberty and bodily changes with their daughters. They should avoid one long talk, says Lisa Perriera, MD, MPH, assistant professor of obstetrics and gynecology at University Hospitals in Cleveland, who treats young women with bleeding disorders. Experts suggest having the talk when your daughter is 8–12 years old. The initial discussion should cover what menstruation is, what happens in the body, what products to use and how to handle cramps, moods and fatigue. Chances are your daughter may already have had a previous discussion in her physical education or health class at school. And some tampon and pad manufacturers sell first-period kits for mothers to use when they ”have the talk” with their daughters.
Parents should answer all questions truthfully, says Perriera. Because young women can be shy or embarrassed to talk about their bodies around their parents, they should be encouraged to talk to their gynecologist or primary care physician privately. Merritt notes that doctors, nurses and social workers at your hemophilia treatment center also can talk to girls about menstruation and guide parents on what to say at home.
Complications and Treatments
Unlike Buurma’s older sisters, who have type I VWD—the most common and the mildest type—she has the most severe type. “We all knew that it would be a problem when I started menstruating,” she says. “I bled for about two months straight and was hospitalized for about three and a half weeks.”
Knowing what’s normal or out of the ordinary is important for a young woman with a bleeding disorder during her first few menstrual cycles. “It’s not normal to be soaking a pad in an hour,” Perriera says. Other complications that require a physician’s attention include severe cramps that interfere with school or activities, and bleeding between periods.
To reduce heavy bleeding, hormonal medications may be needed. But hormonal medications are also prescribed as birth control for sexually active women, which can sometimes present religious, cultural and other concerns for parents. When she was younger, Buurma’s doctors prescribed “the pill” as continuous hormonal medication to relieve her symptoms. “We are Catholic. In our religion, birth control is not an acceptable practice,” she explains. But her parents made it clear that taking the pills wasn’t against church doctrine because she was not using them to prevent pregnancy. Other hormonal options include certain intrauterine devices (IUDs) or hormonal implants.
“I wish hormonal medicines weren’t marketed as birth control. They are period control. They are bleeding control,” says Perriera. Still, she realizes some parents have concerns and may request nonhormonal treatments first. That’s when hematologists can help.
Because each girl with a bleeding disorder experiences a different degree of severity with menstrual bleeding, it may be wise to meet with her hematologist to discuss treatments. “For example, women with von Willebrand disease can be prescribed a hormone called DDAVP in the form of a nasal spray during menses to decrease the flow of bleeding,” says Sanjay Ahuja, MD, MS, a pediatric hematologist and oncologist who works with Perriera. “Women with type III von Willebrand disease may need von Willebrand factor replacement during menses.” Further, physicians will also combine hormonal and nonhormonal medications in patients with severe bleeding, he says.
No young woman should suffer in silence. “I think the messages ‘you’re going to be OK’ and ‘we will deal with any issues together’ are huge,” Merritt adds.
To receive a PDF of Time to Talk Puberty: A Guide for Girls with Bleeding Disorders contact HANDI by phone at 800.424.2634 or by email: [email protected]. The 48-page book provides a comprehensive overview of bleeding disorders, how they are affected in puberty, treatment options, and tips and tricks.