Women with Bleeding Disorders
Women with bleeding disorders tend to have more symptoms because of their monthly periods (menstruation) and because they go through childbirth. Heavy, prolonged periods are the most common symptom for women with bleeding disorders (called menorrhagia). Other important symptoms include prolonged bleeding after dental work or childbirth, frequent nosebleeds or a tendency to bruise easily.
Affected girls may have especially heavy or excessive bleeding when they first start their monthly periods. The most common bleeding disorder that women and girls with heavy periods will have is Von Willebrand’s Disease (VWD), but other factor deficiencies such as Factor VII (seven) or XI (eleven) as well as haemophilia A and B or platelet disorders are possible.
Often, because a woman has always bled a lot during her monthly periods, and because many other women in the family also bleed a lot, she does not realise the amount of blood lost during her monthly period is more than is normal in most women.
These heavier and longer monthly periods can mean that women and girls have low levels of iron in their blood. This is known as anaemia. Anaemia causes weakness and tiredness. Women with bleeding disorders should be checked regularly for anaemia. Iron supplements may be prescribed for this.
Living with heavy periods should not be dismissed as being a minor issue. Heavy periods can have a dramatic effect on a woman’s health, her sense of well-being and her ability to work. Personal relationships can also be affected. GPs have a vital role to play in signposting women to the right specialist care and can offer immediate help by prescribing tranexamic acid which will help with heavy menstrual bleeding, regardless of the diagnosis.
The Haemophilia Society advises all women and girls who have 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 VWD.
What is ‘excessive’ bleeding?
It’s important that people who experience heavy menstrual bleeding are asked how it affects their quality of life. Every woman is different, and what is considered ‘normal’ bleeding during a period for one woman may be ‘excessive’ for another. The average amount of blood lost during a ‘normal’ period is 30–40 mL. Blood loss of 80 mL or more is considered to be ‘heavy’.
Heavy periods (menorrhagia) are common in women with bleeding disorders. If your period last for more than 7-days, you are soaking through sanitary protection every 2 hours or less or your clots are bigger than a 50p piece then you should contact your haemophilia centre. Girls and young women can also have heavy irregular periods when their menstruation begins. However, this may improve slightly but if you have a bleeding disorder you are more likely to continue to experience heavy menstrual bleeding. Keep a diary of your periods (track your blood loss during your period) and bring this with you when you attend your haemophilia centre.
Bleeding after sex
Vaginal bleeding can occur during and after sex. The amount of bleeding varies for each women. However, if this persists for more than a couple of days or you need to use more than two sanitary pads a day, then call your local haemophilia centre for advice.
If you have a bleeding disorder, then you are at increased risk of having endometriosis. This affects women regardless of race or ethnicity. Endometriosis is when the cells like the ones in the lining of the womb (uterus) are found elsewhere in the body, e.g. bladder and bowel. Symptoms include heavy periods (with or without clots), prolonged bleeding, irregular periods, painful bowel movements, back pain and leg pain. It is important to note that these symptoms may not necessarily be caused by endometriosis. Contact your haemophilia centre to discuss any concerns you have about how to manage bleeding caused by your bleeding disorder.
Pregnancy and childbirth
If you have a bleeding disorder and you are pregnant is important for the doctors and midwives looking after you to be aware of this. It should be assumed that your baby may also have a bleeding disorder and delivery methods used should be as gentle as possible. It’s also important that everyone knows about your bleeding disorder if you need a caesarean delivery. The healthcare professionals looking after your pregnancy and your haemophilia centre should develop a plan for your delivery, treatment needed and in case of bleeding after the birth.
This is the surgical procedure to remove your womb (uterus) so that your menstrual bleeding stops. Sometimes your fallopian tubes, cervix or ovaries are removed as well. A hysterectomy is not the first line treatment for women with bleeding disorders, this is the only option if you do not respond to medical treatment suggested by your gynaecologist. A hysterectomy is a major operation with increased risk of bleeding during and after the operation. Recovery times also depends on the type of hysterectomy being undertaken. If your gynaecologists recommends you undergo a hysterectomy you need to contact your haemophilia centre for advice.
Women with bleeding disorders entering the menopause (the end of their monthly periods, usually between the ages of 45 and 50) are likely to be at much higher risk of unpredictable and heavy bleeding.
People with bleeding disorders must not take any form of aspirin because it makes bleeding worse. Some medicines, such as warfarin, affect the clotting factors and are therefore not suitable. Other drugs, such as ibuprofen and non-steroidal anti-inflammatory medicines may need to be avoided. Paracetamol is safe for people with bleeding disorders, as it does not affect the way that platelets work.
It is important to get medical advice before using any other medication or herbal remedies.