While some bleeding disorders are often associated with men, women also experience significant impacts from these disorders. However, bleeding disorders in women are frequently underdiagnosed or misdiagnosed. This can be due to a lack of awareness and the misconception that these conditions primarily affect males. Women can be affected by von Willebrand’s disease (VWD), haemophilia A and B, and other rare inherited bleeding disorders like platelet disorder.

The most common bleeding disorder is von Willebrand’s disease (VWD). This inherited disorder affects approximately 1% of the population and occurs equally in men and women. However, because women face unique bleeding challenges such as menstruation, childbirth, and gynaecologic surgeries, the symptoms can be more pronounced and disruptive. Women with VWD often experience heavy or prolonged menstrual bleeding (menorrhagia), which can lead to iron-deficiency anaemia, fatigue, and a diminished quality of life. Despite this, many women with VWD go undiagnosed for years, often being told their heavy periods are “normal.”

Women also face issues when they have the haemophilia gene, typically haemophilia A or B. Haemophilia is an X-linked recessive disorder, meaning it is more acute in males, as they only have 1 copy of the X chromosome so are fully affected by the haemophilia mutation on the gene. Women have 2 copies of the X chromosome, so they can have the gene mutation but may have better clotting, as they can get some assistance from their un-affected X chromosome. However, this is very variable and so some women can experience abnormal bleeding symptoms. Historically, women with the haemophilia gene were thought to be asymptomatic, due to their “normal” copy of the gene, but research now shows that a significant percentage of these women have low levels of clotting factors and are at risk of abnormal bleeding.  This lack of understanding can mean they still struggle to get proper diagnosis or treatment.

Women with bleeding disorders may experience symptoms including:

• Heavy menstrual periods: Bleeding for more than 7 days, soaking through a tampon or pad every 1-2 hours, and passing clots larger than 25mm.
• Easy bruising: Bruises that are larger than 25mm or occur with no apparent injury.
• Frequent nosebleeds: Nosebleeds lasting longer than 10 minutes, occurring frequently.
• Prolonged bleeding: Bleeding from minor cuts or wounds lasting longer than 5 minutes, excessive bleeding after dental procedures or surgery.
• Anaemia: Low red blood cell count, often associated with heavy bleeding.

The effects of bleeding disorders are not just physical, they also have significant emotional, social, and economic impacts. Women often face the stigma of “complaining too much” about their symptoms, leading to delayed or dismissed concerns. Heavy menstrual bleeding, for example, can interfere with school, work, and social life, and without proper treatment, this can contribute to chronic health issues and psychological distress.

Pregnancy and childbirth can present serious risks for women with bleeding disorders. There is a higher likelihood of postpartum haemorrhage, which can be life-threatening if not properly managed. Prenatal care for women with known bleeding disorders involves a multidisciplinary approach, including haematologists and clinicians familiar with these conditions, to ensure the safety of mother and child.

Despite these challenges, increased awareness and advocacy are leading to improvements. The World Federation of Hemophilia and national member organisations like HNZ are actively working to raise awareness about women with bleeding disorders. Education campaigns, better diagnostic tools, and research into female-specific symptoms are helping close the gap in care.

Women with bleeding disorders have historically been overlooked, but this is changing. Improved recognition of their unique symptoms and experiences is essential for timely diagnosis and effective treatment. Continued education, research, and patient advocacy will ensure that women receive the care and support they need to live healthy, fulfilling lives. Raising awareness is not just a medical issue, it’s a matter of equity and quality of life.

 

References

Center for Disease Control and Prevention. (n.d.). Bleeding Disorders in Women. https://www.cdc.gov/female-blood-disorders/index.html

Haemophilia Foundation of Australia. (n.d.) Women with bleeding disorders. https://www.haemophilia.org.au/bleeding-disorders/women-with-bleeding-disorders/

Srivastava, A., Santagostino, E., Dougall, A., Kitchen, S., Sutherland, M., Pipe, S. W., Carcao, M., Mahlangu, J., Ragni, M. V., Williams, S., & the WFH Guidelines Committee. (2020). WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia, 26(S6), 1–158. https://doi.org/10.1111/hae.14046

World Federation of Hemophilia. (n.d.). Women and girls with hemophilia. https://elearning.wfh.org/elearning-centres/women-and-girls-with-hemophilia/