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Women and Bleeding Disorders: Building Awareness

Blood disorders do not discriminate on the basis of gender. Women are just as likely as men to bleed. But the effects may not be equal.

Women with bleeding disorders face added challenges, including serious impacts to their reproductive health and delayed or failed diagnosis.

At the forefront of the problem is lack of awareness. The U.S. Department of Health and Human Services estimates that up to 4 million women in America suffer from a bleeding disorder, although roughly half of these women are undiagnosed.

Why do so many women go undiagnosed?
Many women feel embarrassed about their bleeding issues and may never seek medical help. And those who do see a medical professional may have their concerns minimized, or even dismissed. For example, physicians may tell them their bleeding is normal, hereditary, or hormonal.

Alarmingly, many healthcare providers are not familiar with bleeding disorders in women and may not recognize the symptoms. Efforts to educate physicians and healthcare providers are underway, led by the Foundation for Women & Girls with Blood Disorders and Victory for Women. But even more progress is needed. Likewise, women and adolescent girls must be their own advocates and know the symptoms of bleeding disorders.

Gynecologic challenges
Men and women both face complications from bleeding disorders; however, additional consequences surround the menstrual cycle and other female reproductive stages.

From adolescence through menopause, women with blood disorders can encounter severe reproductive issues ranging from endometriosis and abnormal contraception to risks with pregnancy and childbirth.

Because abnormal menstrual bleeding can be one of the earliest signals of a bleeding disorder, it is important for women and adolescent girls to identify what is considered a normal menstrual cycle. Similarly, women and adolescent girls should identify patterns in their periods and be on the lookout for abnormal menstrual bleeding.

Types of bleeding disorders in women
The most common bleeding disorder in women is von Willebrand disorder (VWD), which is marked by a deficiency in the body’s ability to produce a specific blood-clotting protein. Whereas VWD occurs equally in men and women, women are more likely to experience the symptoms.

Heavy or abnormal bleeding during menstruation or after childbirth is often the first sign of the condition.  VWD in women can contribute to repeated fetal loss, heavy bleeding with dental procedures, frequent nosebleeds and excessive bleeding during or after surgery.

Women with VWD or heavy menstrual bleeding have a higher risk of developing anemia and may experience pain during menstruation or require hospitalization or blood transfusions.

Other bleeding disorders can cause similar issues for women, including certain types of hemophilia A and B and rare platelet disorders.

A public health issue
The effects of bleeding disorders in women constitute a very real public health concern.  Women with bleeding disorders face challenges that can ultimately limit many of their daily activities and, quite possibly, lead to a poor quality of life.

Effects of bleeding disorders on women and adolescent girls include:

  • Physical issues – headaches, lethargy, anemia
  • Increased incidence of surgical treatment – hysterectomy, uterine ablation
  • Emotional and social issues – low self-esteem, anger, fear, isolation, anxiety, depression
  • Absenteeism from school, often leading to academic and social struggles
  • Difficulty obtaining and maintaining employment, often due to missed work days
  • Financial issues arising from employment issues and/or costly medical interventions

Empowering women
Organizations within the blood disorder community are making important strides in addressing women and bleeding disorders. But progress must be accelerated to ensure women know when and how to seek proper treatment.

Women must first empower themselves with the facts about blood disorders. The U.S. Department of Health and Human Services developed a fact sheet that provides important information about women and blood disorders, including diagnosis and treatment methods and links to additional resources.

With millions of women impacted by blood disorders, it is absolutely essential that women and healthcare providers arm themselves with the knowledge and resources to address the problem – for their own benefit and for the benefit of future generations.

Mark Helm owns and operates Herndon Pharmacy, a specialty provider of factor products to individuals with hemophilia and other rare bleeding disorders. A lifelong hemophilia patient, Helm has dedicated his life and career to advancing care and treatment options for patients with chronic blood conditions.