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.

How Hemophilia Affects Menstruation

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:

• Needing to change your tampon or pad every two hours or more often
• Losing more than 80 milliliters (approximately one-third of a cup) of blood per menstrual period
• Passing clots that are the size of a quarter or larger
• Gushing or “flooding” blood
• Limiting daily activities, such as exercise or social activities

Negative Effects of Abnormally Heavy Periods

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.

Iron Deficiency Anemia

Heavy periods can lead to iron deficiency anemia. Having low iron in the blood may mean your body can’t circulate enough oxygen throughout your body. Signs of anemia include:

• Weakness or fatigue
• Tiredness or lethargy
• Paleness or pallor

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.

Emotional Stress

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.

How To Address Heavy Periods With Hemophilia

Different treatment options are available to help control abnormal bleeding due to hemophilia.

Medication

Pharmaceutical treatment options for heavy menstrual bleeding include:

• Contraceptives or hormonal birth control (combined oral contraceptives and intrauterine devices) that decrease or stop periods via hormones
• Antifibrinolytic drugs, which reduce bleeding by stopping blood clots from breaking down
• Factor replacement therapies (delivered intravenously as preventive, maintenance, or on-demand treatments) that help the blood clot normally

Surgical Intervention

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:

• Dilation and curettage (D&C), which removes the top layer of the uterus’ lining to reduce bleeding — A D&C procedure may need to be repeated to maintain effectiveness.
• Endometrial ablation or resection, which removes all or part of the lining of the uterus to reduce or stop menstrual bleeding
• Hysterectomy, which removes the uterus entirely

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.

Connect With Others Who Understand

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.