Bleeding Disorders

What is menorrhagia?
Menorrhagia is defined as the loss of more than 80 cc of blood per menstrual cycle. This is approximately twice the normal blood loss for each monthly period.

Is menorrhagia common?
It is a very common complaint - affecting about 1 in 5 of all women of reproductive age. In the United Kingdom, for example, it accounts for about 12% of all patients referred to a gynecologist.

What can cause menorrhagia?
There are a number of causes of menorrhagia. These include physical problems, for example, fibroids, hormonal problems and the presence of an underlying bleeding disorder.

Menorrhagia is often a problem for women with inherited bleeding disorders and the time when they start their periods may also be the time when the diagnosis is made. Because other females in the family may also suffer from the inherited bleeding disorder, the affected women may consider the heavy periods 'normal', and never seek medical help.

What are inherited bleeding disorders?
The blood clotting system is comprised of proteins (clotting factors) and cells (known as platelets) in the blood. The platelets are required to stick to the site of injury and temporarily stop the loss of blood. The clotting factors act in a specific sequence to form a solid blood clot, which reinforces the temporary plug of platelets and makes a permanent repair to the damaged blood vessel. Both systems need to work properly to avoid excessive bleeding.

The most common inherited blood clotting disorder is a condition known as von Willebrand Disease. This is due to deficiency of a blood protein (known as von Willebrand Factor) that is necessary to help the blood platelets stick to a wounded area. This may be present in between 1 and 3% of the general population. The condition may occur with a wide spectrum of severity - from very mild (often undiagnosed, especially in males) to very severe (with symptoms very similar to those in hemophilia).

How common is an inherited bleeding disorder as a cause of menorrhagia?
Recent studies have shown that as many as 10-20% of white women with menorrhagia may actually have von Willebrand Disease, and that this is the cause of the heavy bleeding. This was nicely reviewed in an article by Dr. C. Lee (London, England) in 1999. Von Willebrand Disease is less common in African-American females and those of Hispanic or Native American origin. As well as von Willebrand Disease, other disorders, for example, abnormal blood platelets or a deficiency of clotting factor XI (eleven) may cause menorrhagia. Factor XI deficiency is especially common in the female Jewish population.

Why hasn't my gynecologist already suggested this?
The blood clotting disorders are complicated problems and most gynecologists are not trained to consider them as a possible diagnosis. In a recent survey in the United States, almost one half of gynecologists stated that they had never seen a case of menorrhagia that was due to a bleeding disorder. This is in spite of the fact that several studies have shown that these conditions are more likely to occur among females with heavy periods.

How can I find out whether my menorrhagia is caused by an inherited bleeding disorder?
The only way to tell whether you have von Willebrand Disease or another blood disorder that affects your platelets or clotting factors, is to have your blood specifically tested for these conditions. A relatively simple and inexpensive screening test for von Willebrand Disease and blood platelet disorders, known as the Platelet Function Analyzer (PFA)-100 test, is now available.. If this is normal, it is unlikely that you have von Willebrand Disease or a significant problem with your blood platelets. Other tests will be necessary to tell whether you have a problem with your blood clotting factors. Ask your doctor to have these tests done for you. The Florida Hospital Center for Hemostasis and Thrombosis would be happy to advise your doctor on the appropriate tests to order in case he is not familiar with them.

Should I be tested?
Certainly. In fact, as long ago as 1997, the National Hemophilia Foundation said: "Von Willebrand Disease and other inherited bleeding disorders should be considered in the differential diagnosis of all females presenting with menorrhagia".

In addition, in 2001, The American College of Obstetricians and Gynecologists Committee on Gynecologic Practice published its opinion. As well as confirming the need to screen adult women with menorrhagia of unknown cause for bleeding disorders, they said:

"Adolescents presenting with severe menorrhagia should be screened for von Willebrand disease. This screening should be performed before the initiation of hormonal therapy, because oral contraceptives may mask the diagnosis. As many as one third of adolescents presenting with menorrhagia at menarche have been found to have von Willebrand's disease";

and

"Hysterectomy for excessive menstrual bleeding should not be performed without the consideration of bleeding disorders. Women with von Willebrand disease have in the past undoubtedly been given the diagnosis of dysfunctional uterine bleeding and have had hysterectomies for therapy, with resultant increased risks from bleeding at the time of surgery."

What if I have fibroids?
The fibroids may be the cause of your bleeding. However, just because you have fibroids, does not mean that they are the cause of your menorrhagia. It is possible that you could also have a bleeding disorder and, therefore, it is still worth getting tested.

My doctor prescribed hormone therapy and the bleeding got better. Could I still have an inherited bleeding problem?
Yes. Hormones can elevate the levels of the von Willebrand Factor protein in the blood that is usually low in patients with von Willebrand Disease. This may be enough to control the bleeding in your case. It can be difficult to diagnose mild von Willebrand Disease while a patient is on hormone therapy.

What happens if an inherited bleeding disorder is the cause of my menorrhagia?
This will depend on exactly what the problem is. The most common type of von Willebrand Disease, for example, may be treated with a nasal spray containing a drug known as DDAVP. This usually increases the von Willebrand factor levels in the blood to the point where the bleeding is controlled. DDAVP is often more effective in doing this than hormone therapy. More severe forms of bleeding disorder will need to be treated by a physician that specializes in these types of medical problems (a hematologist).

Where can I go to get more information?
An excellent source of information is the National Hemophilia Foundation or the Centers for Disease Control who published a study on this issue in 2000. The National Hemophilia Foundation web site has helpful information that is specifically designed for women affected by bleeding disorders. Similar information is available from the National Women's Health Information Center. Read one woman's personal account of menorrhagia that was due to Vitamin K deficiency (which results in a bleeding disorder).

You can get more information on blood clotting and its disorders (including von Willebrand Disease) elsewhere on this Internet site or contact us directly with your questions.