Illustration by Emma Günther
Everything you need to know about bleeding disorders
Does your period last longer than eight days? It could be due to a bleeding disorder.
Note from our Science Team: When it comes to your period volume, there’s some terminology used by healthcare providers that can sound clinical and even scary. If you’re looking up heavy periods, you may have come across terms like “irregular” and “abnormal uterine bleeding.” Healthcare providers use these terms to describe when measurements are outside a certain range (1). However, having measurements outside of these ranges is not always a sign of a problem. Measurements that can be a problem for one person can be normal and healthy for someone else, and vice versa. The only way to know for sure is to see your healthcare provider about your specific symptoms and concerns.
Many people who menstruate experience heavy periods lasting longer than eight days. Often, periods like this seem completely normal, but long and heavy periods could be a sign that something else is going on in the body.
What’s “normal” anyway?
The menstrual period, commonly called just a “period,” is the shedding of your uterine lining (your endometrium). A typical period lasts between two and eight days* (2). During a typical period, even on your heaviest days, your pad or tampon should last for more than an hour or two before soaking through (3).
Long and heavy periods, called heavy menstrual bleeding (HMB), are not typical. Sometimes women think that HMB is normal because they’ve always had heavy and long periods, or the women in their family have a history of heavy periods.
*According to the International Federation of Gynecology and Obstetrics. Sometimes, a typical period is considered to be between 2 and 7 days. However, if the length of your period concerns you or disrupts your life, you should seek medical advice.
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You may be experiencing HMB if you have any of the following (3-5):
You need to change your tampon or pad after less than two hours
You need to double up by wearing one pad and a tampon because of heavy bleeding
You need to change an overnight pad while you’re sleeping
You fill a small menstrual cup to the brim within one day or nearly fill a medium menstrual cup multiple times during the period
You need to change period underwear more than twice in 24 hours
You have a menstrual flow with blood clots the size of a quarter/€1 coin or larger
You have a menstrual flow so heavy that it keeps you from doing the things you would normally do, such as going to work or school
You have periods longer than eight days
You are tired, lack energy, or are short of breath
What can cause heavy, long periods?
If you deal with HMB every cycle, you could be at risk of having a bleeding disorder. As many as 1 in 100 women and 1 in 5 women with HMB may have a bleeding disorder, and many are undiagnosed (6). A bleeding disorder is a condition when your blood doesn’t clot properly. This may be due to low levels or lack of clotting proteins. Sometimes, the sticky cells in the blood that plug bleeding points called platelets do not work properly causing continued bleeding. There are many different types of bleeding disorders, including Von Willebrand disease (VWD), Hemophilia, Rare Factor Deficiencies, and Rare Platelet Disorders. VWD is the most common bleeding disorder, even though all bleeding disorders are considered rare disorders (4).
In addition to HMB, signs of a bleeding disorder can include (4):
Bruising easily, often without any injury, and/or bruises that are larger than a quarter/€1 coin
Bleeding from cuts or injuries that last longer than 10 minutes
Nosebleeds that happen out of the blue, last longer than 10 minutes, or need medical attention
Low iron levels in your blood or you’ve been diagnosed with anemia
Experiencing heavy bleeding after any surgery including dental surgery
Experiencing heavy bleeding after childbirth or miscarriage
Having someone in your family with these symptoms
Having someone in your family who has been diagnosed with a bleeding disorder such as Von Willebrand disease or Hemophilia.
There may be other reasons for heavy bleeding beside a bleeding disorder. Other possible causes for heavy periods include conditions like endometriosis and fibroids. Heavy periods can also be caused by hormonal imbalances, thyroid disease, and certain medications (2).
What does a path to diagnosis look like?
Sometimes it can take a long time, even years, for people with symptoms to be diagnosed with a bleeding disorder. Talking with your healthcare provider if you have HMB or symptoms of a bleeding disorder can be a good first step to finding out what is causing your symptoms. The process of getting a diagnosis can include gathering a family history, getting a referral to see a specialist, and going through screening and laboratory testing on a sample of blood. Know that those with a bleeding disorder can get treatment to reduce their heavy periods and feel better.
Tools to talk with your healthcare provider
It may be hard to talk to a healthcare provider about your symptoms, especially when not all providers may be aware of bleeding disorders. Healthcare providers may not always understand what you mean if you say, “I bleed a lot during my period.” Numbers and data can be helpful, so tracking your period in the weeks and months leading up to your visit is important. You can use the Clue app to track your period length and volume. On Betteryouknow.org there is a downloadable menstrual chart to help you measure how much blood you are losing and gives your provider a clearer understanding of your bleeding.
Other resources, like a completed bleeding assessment tool (BAT), give your healthcare provider more evidence of your overall experiences so your symptoms can be addressed. BATs are completed by you, and the results when given to your provider can be used for screening and diagnosis. These tools and resources can help you advocate for your needs. Feeling prepared and comfortable talking with your healthcare provider, can help you get the most out of your visit to get the best treatment and care. Remember, you’re the expert on your body and bleeding experiences.
Where can I go for more information?
There are many organizations for both you and your healthcare provider with helpful resources and tools. Below is a list of partners with videos and materials to help you on your path to a diagnosis.
National Hemophilia Foundation’s Better You Know
Betteryouknow.org has a series of videos about how to advocate during a visit with a healthcare provider and a guide to help your provider understand more about bleeding disorders. You can also join Journey to Know, a program to support those with the symptoms of a bleeding disorder but who haven’t been diagnosed yet. You can get more information about the different types of bleeding disorders as well.
Denmark’s bleeding disorder association’s Blødt igennem
Blødtigennem.dk has several articles with personal stories about experiencing symptoms, receiving a diagnosis, and living your life. You can also find information on symptoms, types of bleeding disorders, and treatment. A section is dedicated to healthcare professionals to help identify the information they need to care for you.
The European Haemophilia Consortium
The European Haemophilia Consortium (EHC) provides information on bleeding disorders. It features a movie with women from Holland, Portugal, Sweden, and Serbia, sharing their stories of diagnosis and how they live with different bleeding disorders. You are not alone, and you can find links to resources in several European countries.
World Federation of Hemophilia
The World Federation of Hemophilia (WFH)’s eLearning platform has many resources available in multiple languages to answer your questions about bleeding disorders. Check out this page for women and girls with hemophilia, including an FAQ for women and girls with bleeding disorders, or this video series on intimacy and bleeding disorders.
Let’s Talk Period’s Self-BAT
Let’s Talk Period is a Canadian organization that aims to increase awareness of the signs and symptoms of bleeding disorders. They’ve developed a self-administered bleeding assessment tool (self-BAT) which helps individuals score the degree to which they bleed and recommend medical consultation or further testing, depending on the score received. This self-BAT, available in both English and French, was created to help inform people about their bleeding and guide them toward the help they need.
Resources for your healthcare provider
What to track in Clue app
Essential to track
Bleeding patterns (including spotting)
Period heaviness
Energy
Helpful to track
Custom tags (e.g., clots, number of pads used, menstrual cup total volume)
Contraceptive use
Download the Clue app to track your period and learn more about your health.
