Spreading the Word About Bleeding Disorders in Women and Girls

As a woman affected by the bleeding disorders hemophilia B and von Willebrand disease, I realize that increasing awareness about bleeding disorders in undiagnosed women and girls is essential. All women should be aware of the symptoms of a bleeding disorder and be tested if warranted. Bleeding disorders, even mild ones, can cause life-threatening bleeding problems at all stages of life.

Bleeding Disorders Awareness Month, observed each year in March, is meant to bring awareness to patients and families with hemophilia, von Willebrand disease, and other rare factor and platelet disorders. Members of the community are encouraged to share their stories on social media to spread awareness and educate others. If you relate to my experiences and think you may have a bleeding disorder, I encourage you to share your concerns with your doctor.

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Menorrhagia

The most prevalent symptom of women and girls living with a bleeding disorder is heavy menstrual bleeding, called menorrhagia. I would bleed so much I often couldn’t make it through class without bleeding through my clothing. I often passed golf-ball-sized clots that were no match for a super plus tampon.

The cramping was horrible, too. I would sweat and become nauseous. My gynecologist told me it was like giving birth to a golf ball each menstruation. This type of bleeding often limited my daily activities and caused anemia. Sometimes the bleeding would last more than seven days. I had no trackable cycle.

My gynecologist knew of my bleeding problems and worked with staff at my hemophilia treatment center, a specialized treatment center with various specialists focused on hemophilia. However, some gynecologists and family practitioners may be unfamiliar with the signs and symptoms of bleeding disorders. They may attribute heavy periods to other causes or have little empathy for the situation. Many women struggle to be diagnosed, even with a family history of bleeding disorders.

What to watch for

Besides menorrhagia, other problems may exist in a person with a bleeding disorder. Following are some of the issues I have experienced.

I have been iron deficient and anemic throughout my life. Hard-to-digest iron tablets did not work for me. A few years ago, I had an infusion of iron, where iron is infused intravenously. For the first time, I am not iron deficient.

Many people with bleeding disorders suffer from abnormal or frequent nosebleeds. We think of nosebleeds as being part of childhood. Sometimes my nosebleeds would last for 10 minutes or longer. 

Next is easy bruising. Sometimes my bruises have lumps under them, and they’ll appear spontaneously, with little or no trauma. My bruising is better today, but there was a time when touch with medium pressure, such as a handshake, would leave a mark.

I have bled excessively after medical procedures, too, sometimes even after receiving preventive treatment. Biopsies, tooth extractions, gynecological procedures, and a hernia repair were all made more eventful by bleeding issues. The bleeding often wasn’t excessive during surgery but would start again in the days following surgery. Bleeding several days after a tonsillectomy led to my diagnosis of von Willebrand disease and hemophilia B.

I have experienced muscle and joint bleeding without a physical injury. For example, I was walking one day and thought I stepped on a nail. It turns out I had a bleed.

I have had blood in my stool for no apparent reason. As embarrassing as heavy menstrual bleeding, I have had to receive treatment for this bleeding, which at times has been excessive.

Minor wounds can bleed for a long time. At a birthday party once, there was blood all over the floor in the kitchen. A group of us walked around following the blood trail to figure out where the injured person was. Eventually, I realized I had a minor cut on my foot, and my bleeding was creating the trail.

What should you do?

If you think you may have a bleeding disorder, talk to your doctor. This online test can help with your bleeding assessment score. Laboratory testing should be the next step if you have an abnormal score. Hemophilia treatment centers across the U.S. specialize in bleeding disorders and are an excellent place to start.