Addressing clinical and psychological issues surrounding menstruation and hemophilia

Hemophilia has traditionally been viewed as a condition that affects men but not women. However, both males and females carry the hemophilia gene from one generation to the next. Claire McLintock, MD, an obstetric physician and hematologist at Auckland City Hospital, New Zealand, added that women who carry the hemophilia gene can still experience abnormal bleeding. Consequently, women at risk of being hemophilia carriers should be tested.

In contrast to hemophilia, other bleeding disorders, such as von Willebrand disease, are over-represented by women. One of the biggest problems facing women with a bleeding disorder is heavy menstrual bleeding affecting nine out of ten women. In addition, women with a bleeding disorder tend to bleed for longer and experience heavier bleeding.

McLintock went on to describe the specific questions healthcare providers should ask women when assessing the presence and extent of heavy menstrual bleeding (defined as heavy blood loss that interferes with a woman’s physical, social, and/or material quality of life). Many treatment options are available to women with heavy menstrual bleeding. However, barriers to accessing healthcare exist for these women, in part due to reluctance to accept their condition or to approach their doctor about this health issue.

Certain cultures and religions impose many restrictions on women who are menstruating because they are viewed as impure. However, some societies—such as the Maori society in New Zealand and some North American tribes—consider menstruation to be sacred. McLintock discussed the challenges facing both menstruating women and girls in the developing world, and also those with bleeding disorders and heavy bleeding. She touched on the new Haematology in Obstetrics and Women’s Health (HOW) Collaborative in New Zealand and Australia that aims to improve health outcomes in women with abnormal bleeding related to obstetric or gynecological conditions.

To change attitudes to heavy menstrual bleeding in women with bleeding disorders, it will be necessary to first recognize the problem. “Education is a great way to start and organizations like the WFH with its global outreach are perfectly placed across the world to lead the change,” concluded McLintock.

Mitch Semienchuk, Editor, Hemophilia World Online, wishes to thank Georghia Michael. PhD, for her contributions to this article.