In this section we will give a brief overview of:

It is a common misunderstanding that bleeding disorders affect exclusively men, however women also suffer from bleeding disorders. Some women have similar symptoms to men and bleeds that can be amplified during menstruation and childbirth, while others carry the gene and do not experience any symptoms, although like men they can pass on the gene to their children.

Moreover, some women with a defective gene for haemophilia can have similar symptoms to severe haemophilia even though their clotting factor levels are above 40 per cent. In this case this individual will be called a symptomatic carrier.

Besides the ‘regular’ bleeds that are experienced by men with a bleeding disorder, women experience other symptoms. Women may experience heavier and longer menstrual flows, which besides causing iron deficiency, weakness and fatigue can also be debilitating. Women with bleeding disorders are also more likely to experience more significant pain during their menstrual bleeding and they may also experience a small amount of internal bleeding during ovulation, which can cause abdominal and pelvic pain. Moreover, during ovulation, women with bleeding disorders are also more at risk of developing haemorrhagic ovarian cysts. The development of ovarian cysts in healthy women is a common and benign phenomenon. However, in women with bleeding disorders, they put the individual at greater risk of internal bleeding. This bleeding can be severe or even life-threatening, especially in carriers with very low clotting factor levels and may require urgent medical attention.

Women with bleeding disorders also suffer from endometriosis, a painful condition in which endometrial tissue, the tissue that lines the uterus, forms in the abdomen or other parts of the body. Although we do not yet understand the cause of endometriosis, women who experience heavy menstrual bleeding are more at risk of developing this condition.

Finally, during perimenopause, the three- to ten-year period before menopause when hormones are ‘in transition,’ heavy and irregular menstrual bleeding occurs more commonly. This may lead to gynaecological conditions (such as fibroids, polyps, etc.) and women with bleeding disorders and carriers of haemophilia are at risk of more severe bleeding symptoms during this phase of their life and may require treatment.

Because of the common misconception that bleeding disorders only affect men, many women who suffer from bleeding disorders still remain undiagnosed. Both patients and physicians in many European countries have been developing programmes to raise awareness so that these women can be properly diagnosed and cared for. You can find some examples of these programmes here:

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Family planning

Women with clotting factor deficiencies and families with a history of bleeding disorders should receive genetic counselling about the risks of having an affected child well in advance of any planned pregnancies, and should see an obstetrician as soon as they suspect that they are pregnant. The obstetrician should work closely with the staff of the haemophilia/bleeding disorder treatment centre in order to provide the best care during pregnancy and childbirth and to minimize the potential complications for both the mother and the newborn.

Haemophilia and other bleeding disorders can be diagnosed early on in the pregnancy. Several testing techniques are available to families, which include:

Prenatal testing can help families to make informed decisions and preparations for the pregnancy and delivery. Today families at risk of giving birth to children with genetic defects can also make use of pre-implantation genetic diagnosis (PGD), a technique that involves testing cell(s) from embryos created outside the body by in vitro fertilisation (IVF) for a genetic disorder. Tests are carried out for the specific disorder that the embryos are known to be at significant risk of inheriting. Unaffected embryos are selected for transfer to the uterus in the hope that a normal birth will ensue.

Women with certain factor deficiencies (such as factor XIII deficiency and afibrinogenemia) may be at greater risk of miscarriage and placental abruption (a premature separation of the placenta from the uterus that disrupts the flow of blood and oxygen to the foetus). Therefore, these women require treatment throughout the pregnancy to prevent these complications.

The main risk related to pregnancy is postpartum haemorrhage. All bleeding disorders are associated with a greater risk of increased bleeding after delivery. The risk and the severity of the bleeding can be reduced with appropriate treatment. This treatment is different for each woman and depends on her personal and family history of bleeding symptoms, the severity of the factor deficiency, and the mode of delivery (vaginal birth vs. caesarean section). Factor replacement may be necessary in some cases.

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Resources

For further information about women and bleeding disorders we recommend that you consult the following websites:

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