Heavy periods? You may have an undiagnosed bleeding disorder

About 30% of women report having heavy menstruation at some point during their reproductive years. Up to 15% of them have an underlying bleeding disorder and yet, most have never been diagnosed, leaving thousands of women with a treatable problem.

Hematologist and clinical scientist at Queen's University, she is involved in patients with inherited bleeding disorders. It is a major source of frustration for me that women with bleeding disorders can wait until they are 15 years old to get the appropriate tests and treatments.

I worry even more about what happens to those who are never diagnosed. These women are at risk of acute hemorrhaging leading to blood transfusions and the need for a hysterectomy.

Because April 17 is the 29th World Hemophilia Day – a day focused on awareness and education about hemophilia – I would like to share factual information about heavy times What does it mean to be a "woman carrier" of hemophilia and can easily test you for a bleeding disorder.

Iron deficiency and abnormal periods

The bleeding disorders that affect women include von Willebrand disease and hemophilia. Both diseases are hereditary and are caused by a low level of "clotting factors" (proteins necessary for normal blood clotting).

In families with a bleeding disorder, it is common for women not to realize that their periods are plentiful because other women in the affected family have similar problems. For them, the abundant rules seem normal.

There are also social stigmas against open discussion about hard times to overcome. And there is a lack of accurate information about normal times versus abnormal times.

Some of the main features of heavy and abnormal menstruation include having to change towel or tampon over an hour, iron deficiency anemia, frequent bedtime diapers, and bleeding that lasts longer. seven days.

Iron deficiency anemia is of particular concern because it causes fatigue and shortness of breath, as well as poor academic and professional results.

Iron deficiency and heavy menstruation are all too often ignored, but may be signs of an underlying bleeding disorder. Both are easily treated once the diagnosis is made.

Women may also have hemophilia

Women with hemophilia are very often considered as "sole carriers" – capable of transmitting a mutant gene to their children. This can be said by their doctor. At that time, their bleeding is often untreated because of this misconception.

My own research however showed that about 30 to 40% of hemophilia carriers had abnormal bleeding, including heavy periods, postpartum hemorrhage, and joint bleeds. Some, but not all, have low clotting factor levels.

Effective treatments for heavy periods in women with bleeding disorders are widely available. These include the oral contraceptive pill and medications such as tranexamic acid (which prevents clot decomposition) and desmopressin (which increases clotting factor levels).

Gynecological options such as the levonorgestrel intrauterine device (IUD) and endometrial ablation also exist.

In rare cases, women with bleeding disorders need infusions of clotting factor to control heavy periods. In case of iron deficiency, iron supplementation is a key element of treatment as it improves the quality of life. Feeding iron alone is not enough to correct iron deficiency, especially once it has caused anemia.

Historically, research and education on hemophilia were focused primarily on improving the treatment of boys and men with the disease. The pillar consists of frequent intravenous infusions of the missing coagulation factor. Significant progress has been made, including the development of better treatments and the possibility of healing.

Are your bleeding symptoms normal?

Many organizations are now working to increase the public's knowledge of bleeding disorders. The recognition that women can also be afflicted with hemophilia is increasing thanks to the efforts of organizations like the World Federation of Hemophilia.

The role of new therapies for women with hemophilia is unclear and further research is needed to understand exactly why these women are bleeding. A recent study from my lab showed that the blood coagulation system of carriers of hemophilia did not respond to hemostatic stress (such as trauma) as well as in healthy controls. A rapid and sustained increase in blood clotting factors is required to stop bleeding after injury, which has been significantly altered in carriers of hemophilia.

If you are wondering if you have a bleeding disorder, the Self-BAT tool is available free of charge and can tell you if your bleeding symptoms are normal or abnormal.

This tool badyzes information about your bleeding symptoms to generate a bleeding score. A high bleeding score is badociated with an increased risk of having an underlying bleeding disorder and needs to be discussed with your doctor.

Significant progress has been made in understanding the problems faced by women with bleeding disorders. More research and education are needed to ensure that all women are diagnosed and treated properly.