Women with Bleeding Disorders

There are 17,000 women and girls in the UK living with a diagnosed bleeding disorder and at least 35,000 undiagnosed.  Women and girls routinely put up with heavy menstrual bleeding, often accompanied by other tell-tale symptoms, such as bruising and prolonged bleeding after dental work or childbirth, without realising that they could have a genetic bleeding disorder.

We advise all women and girls with possible bleeding disorder symptoms to ask their GP to be referred to their local haemophilia centre for specialist testing. Basic tests done through a GP are unlikely to pick up some disorders – particularly von Willebrand Disorder (VWD). Check your symptoms with our Talking Red Symptom Checker. You’ll find support and information in our Talking Red section, which is dedicated to raising awareness and providing support for women and girls with genetic bleeding disorders.

What bleeding disorders do women get?

The most common bleeding disorder is von Willebrand Disorder. There are about 7,000 women in the UK with this disorder with about 270 women diagnosed every year.

Other bleeding disorders that affect women are Factor VII (seven) deficiency, Factor XI (eleven) deficiency, Glanzmann’s Thrombasthenia, Bernard-Soulier Syndrome and other platelet disorders.

Women who carry the haemophilia gene may also have mild or moderate haemophilia, meaning some have low factor VIII (eight) or factor IX (nine) levels and require treatment.

Heavy periods and bleeding disorders

Heavy periods (menorrhagia) are common in women with bleeding disorders. We know that 20 per cent of adolescent girls who seek medical help with heavy menstrual bleeding will have a bleeding disorder and yet the majority will never be tested. If your period lasts for more than seven days, you are soaking through sanitary protection every two hours or less, or your clots are bigger than a 50p piece, then you should contact your haemophilia centre. If your heavy periods are affecting your quality of life, this is classed as ‘excessive’ menstrual bleeding.

Bleeding disorders don’t run in my family, so can I have one?

As many as a third of bleeding disorder diagnoses have no known family history and can be the result of a random gene mutation. This means a bleeding disorder diagnosis can come completely out of the blue. Also, some people may not be aware of a bleeding disorder within their family if other relatives are undiagnosed or if their symptoms are different.

Find more information in our Women living with bleeding disorders and Girls living with bleeding disorders booklets.

Talking Red – supporting women with bleeding disorders

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