Bleeding is the best-known symptom of hemophilia, but it is not the only symptom. Pain, mobility issues, depression, and fatigue (exhaustion that doesn’t improve with rest) 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 living with hemophilia may experience both internal and external bleeding. Symptoms can vary depending on how much clotting factor is present in the blood. Some people may only bleed more than usual after surgery, dental work, or an injury.

Others — especially those with more severe forms of hemophilia — may have spontaneous bleeding, which happens without any clear cause. One of the most serious and life-threatening complications is intracranial bleeding (bleeding in the brain).

Common bleeding symptoms of hemophilia include:

• Bleeding into the joints and muscles (which may cause swelling, pain, or limited movement)
• Blood in stool (poop) or urine
• Frequent or prolonged nosebleeds
• Bruising easily
• Heavy or prolonged bleeding after injuries, surgery, or dental procedures
• Spontaneous bleeding (without obvious injury)
• Eye bleeds
• Gastrointestinal bleeds
• Intracranial bleeding (which can cause headaches, confusion, or other neurological symptoms)
• Nosebleeds
• Throat bleeds

Although hemophilia is more commonly diagnosed in males, females can also experience symptoms. For many years, they were thought to be asymptomatic carriers — meaning they carry the gene for hemophilia but do not show signs of the condition.

However, research now shows that some females have low levels of clotting factor, which can lead to:

• Heavy menstrual periods
• An increased risk for anemia (low red blood cell count)
• Bleeding complications during or after surgery or childbirth

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
• 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 be diagnosed only after 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, according to the National Bleeding Disorders Foundation.

Read more about how hemophilia and inhibitors are treated.

Many older adults with hemophilia live with human immunodeficiency virus (HIV) or hepatitis, having contracted it during the 1970s or 1980s 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

On MyHemophiliaTeam, people share their experiences with hemophilia, get advice, and find support from others who understand.

What’s helped you the most in managing your hemophilia day to day? Let others know in the comments below.