Heavy Periods Can Be a Sign of a Bleeding Disorder—Why You Shouldn’t Ignore Them

Over 11,000 people in Canada have a bleeding disorder*—and too many women don’t know they have one.

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Here’s why women are disproportionately affected and what you need to understand to be proactive with your health.

Having a bleeding disorder means that the blood clotting process doesn’t work properly. You may bleed for longer than normal and experience spontaneous bleeding into joints, muscles or other body parts.

Bleeding disorders include hemophilia, von Willebrand’s disease, clotting factor deficiencies and platelet function disorders. They can be inherited from your parents or develop over time.

In this Facebook Live event, Lisa Thibeault, an inherited bleeding disorders nurse coordinator, and Sidney Hryciuk, a Canadian living with Hermansky-Pudlak syndrome, discuss bleeding disorders, why women are particularly at risk and where to find resources and support.

Heavy periods and long-lasting periods are symptoms of bleeding disorders.

In fact, about 1 in 3 people who see their doctor about heavy periods discover they have a bleeding disorder.* There are other symptoms to look for: easy bruising, nosebleeds and blood in the urine and stool.

Historically, women with bleeding disorders have faced greater misconceptions, dismissal of symptoms by healthcare professionals and lack of access to treatment information and resources.

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There’s a misconception that women are silent carriers of hemophilia, that they can have the hemophilia gene but not the abnormal bleeding symptoms. The reality is that many hemophilia carriers experience abnormal bleeding and heavy periods. Women may think their periods are normal because it’s what they’re used to and it runs in the family — their sisters, aunts and mothers also have heavy periods. Such mistaken beliefs can delay diagnosis and treatment.

This echoes the experience of Sidney Hryciuk, who was diagnosed with a bleeding disorder called Hermansky-Pudlak syndrome at age 12. “Even with diagnosis, I didn’t know that I had heavy menstrual bleeding or what it was for almost a decade. I thought it was normal to be on the first day of your period and feel intense fatigue, change super plus tampons frequently or double up on protection. I definitely experienced the type of self-normalization and family normalization that typically occurs. The women in my family have heavy periods too. The lack of dialogue around what a normal period is certainly played into that.”

Diagnosis of bleeding disorders can be difficult.

Bleeding disorders can be undiagnosed due to lack of knowledge by healthcare providers and the general public. Many women have experienced misdiagnosis or are dismissed and told that their symptoms are normal. Women may not bring it up with their healthcare provider because they experience menstrual stigma. But menstruation shouldn’t be a taboo topic. Having open discussions can increase awareness and recognition for all people who menstruate.

“We really need to get rid of the misconceptions and take women seriously,” says Lisa Thibeault, an inherited bleeding disorders nurse co-ordinator for the Inherited Bleeding Disorder Program of Southeastern Ontario at Kingston Health Sciences Centre—one of 26 such clinics across Canada that provide enhanced specialized care, treatment, education and support for people with bleeding disorders. (Find a treatment centre near you here.)

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Women & Bleeding Disorders Clinics across Canada are devoted to providing multidisciplinary care to people who menstruate. The clinics are comprised of a hematologist, gynecologist/obstetrician, and nursing. “We provide care to those with an inherited or acquired bleeding disorder who need treatment for heavy menstrual bleeding, we help individuals who require gynecologic surgery and procedures, and we also help individuals who are pregnant and make recommendations to assist with their care and the babies’ care during labour and delivery,” explains Lisa. “Individuals who menstruate and have an inherited or acquired bleeding disorder are disproportionally affected by bleeding disorders because they bleed every month. Our goals with the Women & Bleeding Disorders clinics are to provide timely, multidisciplinary care to those affected with a bleeding disorder who may have faced misconceptions, dismissal of symptoms by healthcare providers and lack of access to information and resources.”

Women face particular challenges and risks in managing bleeding disorders.

Without proper diagnosis, heavy periods can lead to reduced quality of life. Women with heavy periods can have chronic iron deficiency, are at risk for hemorrhaging during childbirth, and may require hysterectomies and blood transfusions.

Managing a bleeding disorder may mean restricting certain activities or sports to prevent injury, taking medication during and after medical procedures to prevent prolonged bleeding, and avoiding medications like aspirin that worsen bleeding.

Aging with a bleeding disorder also has its struggles. For women with an underlying bleeding disorder, their periods get heavier with age. Issues with balance, strength and vision mean increased risk of falls. For those with bleeding disorders, this carries more potential risks of injury and blood loss.

Novo Nordisk Img4 1000x750Photo: Hemophilia Ontario

It’s important to advocate for your health and reach out for support and available resources.

Hemophilia Ontario recently released Heroixx, a revolutionary tool for women with bleeding disorders. The website is specifically designed with resources, education and support for women and those who menstruate with bleeding disorders. It’s a welcome space for everyone, regardless of gender identity or reasons for being there.

Know Your Flow: A guide to periods when you have a bleeding disorder is the first inclusive educational booklet to help guide and prepare for the first menstrual period, particularly for those who have, or whose family members have, a bleeding disorder. The booklet was developed by Novo Nordisk.

And, of course, learn the signs that your period might be too heavy. If you’re concerned you may have abnormal bleeding, speak to your healthcare provider. Bleeding disorders can be managed with proper treatment.

For more information and support, visit Hemophilia Ontario.

This article is sponsored by Novo Nordisk Canada and Hemophilia Ontario.

* DATCH (Developmentally Appropriate Tools for Children with Hemophilia). (n.d.). Know your flow: A guide to periods when you have a bleeding disorder. https://www.mydatch.com/_files/ugd/259e13_75b99426bdc64ff2a3e3421f8291e6c5.pdf

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