Hemophilia is a chronic, genetic bleeding disorder in which the blood has low levels of certain clotting factors. This can lead to symptoms such as prolonged bleeding, bruising, or excessive blood loss. Because people with hemophilia have blood that doesn’t clot correctly, any bleeding needs to be carefully managed. Periods in particular can pose a unique challenge. If you have monthly bleeding from periods, hemophilia can lead to heavy menstrual bleeding and related complications. Here’s what to know.
Hemophilia can lead to heavy periods. In fact, along with frequent nosebleeds and easy bruising, heavy menstrual bleeding is a symptom that commonly leads to the diagnosis of hemophilia.
Heavy menstrual bleeding, or menorrhagia, is excessive bleeding or prolonged bleeding (more than seven days) during your monthly cycle. One MyHemophiliaTeam member commented, “It’s that time of the month for me, and sometimes it’s like it never ends.”
Excessively heavy menstrual periods are characterized by the following:
Because of the genetic inheritance pattern of hemophilia, women should make up around 30 percent of hemophilia diagnoses. However, the World Federation of Hemophilia reports that women make up about 3.5 percent of people with hemophilia, suggesting that women may often go undiagnosed or experience delays in diagnosis.
Undiagnosed or untreated blood disorders have medical consequences that can be bothersome or even dangerous if not attended to. These include anemia, fatigue, and other effects that can impact your quality of life.
If you have a bleeding disorder, your doctor may suggest that you undergo routine testing for anemia, which may involve monitoring your iron levels, especially during your period. Diagnosing and treating iron deficiency anemia is important for feeling stronger and helping you avoid other complications such as delayed growth, heart problems, or issues with pregnancy.
Periods are nothing to be ashamed of, but for some people, periods are a private or even taboo matter. Heavy periods may be stressful if you worry about visible breakthrough bleeding in public. Long, heavy periods; cramping; and discomfort can also interfere with day-to-day activities, such as exercise, school, work, social events, and sexual intimacy. Teenagers with hemophilia, in particular, may be more prone to feelings of exclusion, isolation, or low self-image related to their heavy periods.
Different treatment options are available to help control abnormal bleeding due to hemophilia.
Pharmaceutical treatment options for heavy menstrual bleeding include:
Sometimes, medication may not provide appropriate relief. Surgical options are also available. These surgical options are more invasive, but they may be more effective for some people. “I’ve seen some women on here say birth control elevates factor levels. … I had a hysterectomy after bleeding every day for eight months straight,” one MyHemophiliaTeam member shared. Another member said, “After years of horribly heavy bleeding every month, there was nothing else the doc could try. I had a hysterectomy a few years ago.”
Some surgical procedures to address heavy periods include:
These procedures can affect your ability to have biological children to varying degrees. You should speak to your hematologist or hemophilia treatment center team about all your options to control your heavy menstruation.
Psychological and social support are important components of comprehensive care for hemophilia. MyHemophiliaTeam is the social network and online support group for those living with hemophilia and their loved ones. Thousands of members come together to ask questions, give advice, and share their experiences with others who understand life with hemophilia.
Do you have heavy menstrual bleeding from hemophilia? What helps you manage it? Share your experience in the comments below, or start a conversation on MyHemophiliaTeam.