Bleeding is the best-known symptom of hemophilia, but it is not the only symptom. Pain, mobility issues, fatigue, and depression affect many people with bleeding disorders.

Types of Hemophilia Symptoms

Some symptoms of hemophilia are caused directly by bleeding, while others may result as complications of bleeding.

Bleeding Symptoms

People with hemophilia can have internal or external bleeds. Bleeding symptoms vary with the level of clotting factor a person has — more severe symptoms are likely when levels of clotting factor are very low. Some people may only experience bleeding problems after surgery or dental work. People with more severe cases of hemophilia may experience spontaneous bleeds. Intracranial bleeds (bleeds in the brain) are among the most dangerous and life-threatening.

People assigned female at birth were long considered to be asymptomatic carriers of hemophilia. However, doctors have begun to realize they can also have low levels of clotting factor that lead to heavier-than-normal menstrual periods, a higher risk for anemia (low levels of red blood cells), and a risk for bleeding during or after surgery or childbirth.

Low levels of clotting factor may cause symptoms like:

• Bleeding into the joints and muscles
• Blood in stool or urine
• Bruising
• Excessive bleeding during or after surgery
• Excessive bleeding during or after childbirth
• Eye bleeds
• Gastrointestinal bleeds
• Heavy menstrual periods
• Intracranial bleeding
• Nosebleeds
• Prolonged bleeding after injuries
• Spontaneous bleeding
• Throat bleeds

Pain Symptoms

According to the results of a survey of MyHemophiliaTeam members, 57 percent of people with bleeding disorders experienced pain severe enough to make it difficult to leave the house. About 71 percent reported pain that impacted their sleep and ability to perform household chores.

During a bleed, the affected limb or body part may feel painful, warm, tight, and swollen. Over time, bleeds may gradually cause damage to joints that contribute to chronic pain. Some people with bleeding disorders also report frequent headaches.

Mobility Symptoms

Bleeding can gradually damage joints to the point where movement is difficult and the joint becomes deformed. Approximately 57 percent of those surveyed by MyHemophiliaTeam said that difficulty walking and other mobility issues impeded their day-to-day routines. Joint damage can become severe enough that some people with bleeding disorders need surgery to repair or replace a joint.

General Symptoms

The results of the MyHemophiliaTeam survey revealed that 65 percent of those with hemophilia report depression severe enough to affect their daily life. Many people with bleeding disorders also report experiencing fatigue and anxiety. Depression, anxiety, and fatigue are common symptoms for many people with chronic illnesses.

If you feel hemophilia is affecting your mental health, talk to your doctor. They can recommend a therapist or counselor to help.

What Are the Early Signs of Hemophilia?

Babies with severe hemophilia A may be diagnosed at birth or shortly after. Bleeding disorders may be diagnosed in children or adults when a small cut continues to bleed for longer than usual, they have multiple nosebleeds with no known cause, they bruise very easily, they bleed excessively during dental procedures, or their joints become swollen or painful.

For those with mild or moderate bleeding disorders, the condition may not be diagnosed until later in childhood or even adulthood. Some people with bleeding disorders may only be diagnosed when they experience excessive bleeding during menstruation, pregnancy, or childbirth.

A bleeding disorder is not diagnosed based on symptoms alone. The process of diagnosing hemophilia involves a blood test to check levels of clotting factors, as well as finding out about your health and family history. Other health conditions and some medications can cause symptoms similar to those of bleeding disorders. Before reaching a diagnosis of hemophilia, the doctor will consider other issues that could potentially cause the symptoms.

Complications of Hemophilia

Some people with bleeding disorders develop inhibitors. Inhibitors are antibodies — proteins made by the immune system — that attack and destroy replacement clotting factor, making hemophilia treatments less effective. Between 20 percent and 30 percent of people with severe hemophilia A develop inhibitors. It is less common for people with hemophilia B to develop inhibitors — about 4 percent do — but inhibitors are much harder to treat in those with hemophilia B. Inhibitors are most likely to develop during the first 50 hemophilia treatments.

The risk for developing inhibitors is higher for those whose hemophilia is severe, those with a family history of inhibitors, and people who are Black or Asian. Read more about how hemophilia and inhibitors are treated.

Many older adults with hemophilia live with HIV or hepatitis, having contracted it during the 1970s or ’80s from a transfusion of contaminated blood products, before modern testing and safety procedures came into practice. Treating these viruses, and any other health conditions, is a vital part of hemophilia treatment.

Find Your Team

MyHemophiliaTeam is the social network for people with hemophilia and their loved ones. On MyHemophiliaTeam, more than 6,600 members come together to ask questions, give advice, and share their stories with others who understand life with hemophilia.

What hemophilia symptoms do you experience? How are you managing them? Share your ideas in the comments below, or start a new conversation on MyHemophiliaTeam.