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Symptoms of von Willebrand disease

What are the symptoms of von Willebrand disease?

Common symptoms of VWD are:

• easy bruising
• bleeding from nose and gums
• prolonged bleeding from skin lacerations 
• bleeding from the gums when baby teeth fall out or after tooth extractions
• heavy or prolonged bleeding during menstruation, called menorrhagia.

However, many people with VWD do not notice anything is wrong. They realize they have a bleeding problem only when another person in the family is diagnosed with VWD or after they have a serious injury or surgery.

When are symptoms of von Willebrand disease first seen in children?

Symptoms of VWD can begin at any age. The signs are:

• bruises from minor bumps
• nose bleeds
• prolonged bleeding from minor cuts.

In cases of severe Type 3 VWD, bleeding can occur in newborns, especially from the umbilical cord and at the time of circumcision. These types of bleeding can also occur with Types 1 and 2 VWD, but only in rare cases.

Are symptoms of von Willebrand disease the same for everybody?

No. The symptoms of VWD vary greatly from person to person. Even members of the same family will have different symptoms.

The type of VWD affects the severity of the symptoms, too.

• The symptoms of Type 1 VWD are usually very mild. However, it is possible for a person with Type 1 VWD to experience serious bleeding episodes.
• The symptoms of Type 2 VWD are moderate.
• The symptoms of Type 3 are more severe. People with Type 3 VWD can have bleeding into muscles and joints, sometimes without injury.

Symptoms of bleeding into a joint or muscle are:

• a feeling of tightness in the joint or muscle
• a puffiness to the touch
• heat at the site of the bleeding
• a limitation in movement of the joint
• increasing pain.

What’s more, because of the menstrual cycle and childbirth, women tend to have more symptoms than men do.

What other signs of a bleeding disorder are seen in women?


Menorrhagia, metrorrhagia

Heavy, prolonged menstrual bleeding is the most common symptom for women with VWD. Some women have heavy bleeding throughout the normal menstrual period. This is called menorrhagia.

Other women bleed unpredictably throughout the month. This is called metrorrhagia. If women lose enough blood over a long period, they suffer from iron deficiency anemia.

It can be hard for any woman to tell if her bleeding is unusually heavy compared to others. In a woman with VWD, comparison to other family members can be misleading as they, too, may be affected by VWD. Sisters, mothers, aunts and grandmothers often have the same problem. Nobody sees it as special or, if they do, they say, “All the women in our family bleed a lot during their periods.” The following guidelines should alert a woman to a potential problem:

• flow which lasts longer than 7 days
• flow soaking one maxipad in less than 2 hours
• unpredictable bleeding
• menstrual bleeding which affects quality of life
• periods heavy enough to cause anemia.

Menstrual bleeding can be especially heavy at the time of a girl’s first periods. For this reason, when there is a family history of a bleeding disorder, she should be closely followed through puberty. The medical team should include:

• a gynecologist
• a hematologist with experience in treating bleeding disorders and
• a family physician or pediatrician.

Dysmenorrhea and mid-cycle pain

Some women with VWD have pain during their menstrual periods. This is called dysmenorrhea. Dysmenorrhea is usually worse in women with heavy flow such as those with VWD. They can also have pain at mid-cycle at the moment of ovulation. With ovulation slight bleeding of the ovary is common. For women with VWD this bleeding can be significant and cause severe pain.

Some women can have a separate condition called endometriosis. With this condition endometrial tissue forms outside the uterus, for example, around the abdomen. When a woman menstruates, endometrial tissue, wherever it is in the body, bleeds. If these women also have VWD, the bleeding may be heavy. The blood can irritate the abdominal wall, causing pain. Typically, this pain starts a few days before the onset of vaginal bleeding.

How many women with menorrhagia actually have a bleeding disorder?

A study by Kadir et al (The Lancet, February 14, 1998) reported that 1 woman out of 5 who went to see their doctors because of heavy, prolonged bleeding during their periods (menorrhagia) actually has a bleeding disorder. This means that menorrhagia caused by bleeding disorders is much more common than doctors thought in the past.

The most common bleeding disorder diagnosed in this study was von Willebrand disease.

Careful questioning by doctors showed that many of the women with bleeding disorders could report a family history of bleeding problems.

In the general population less than 10% of women have menorrhagia. However, Kadir et al (Haemophilia, May 1998) found that 73% of women with von Willebrand disease suffer from menorrhagia.

How does menopause affect a woman with von Willebrand disease?

After many years of battling heavy periods, one might expect women with VWD to look forward to menopause. In fact, hormone regulation becomes more chaotic as a woman enters menopause and this increases her risk of unpredictable and heavy bleeding. This is particularly true of a woman with VWD where the consequences of poor hormone regulation can be catastrophic. It is important that a woman with VWD maintain a strong relationship with her gynecologist even after childbearing as she enters her forties so as to anticipate the combined issues of menopause and VWD.

How does menorrhagia affect a woman’s quality of life?

Menorrhagia seriously affects a woman’s quality of life. Here are some examples. Women with menorrhagia caused by VWD may…

• limit the amount of time they work
• change careers as a result of bleeding problems
• be unable to work normally during their menstrual periods
• have lost faith in the medical profession after being told for years that their problems were not real
• suffer constant fatigue from iron deficiency anemia
• suffer from depression as a result of the strain of their bleeding disorder
• suffer pain during their menstrual periods and times of ovulation
• have increased episodes of ovarian cysts, pain, internal bleeding and risk of subsequent surgery with potential loss of the ovaries
• live with the embarrassment of staining due to heavy bleeding
• have had hysterectomies because doctors did not diagnose a bleeding disorder. This meant they had unnecessary surgery and could not have any more children.

Happily, with proper diagnosis and treatment, these problems can be dramatically reduced and even eliminated.