Women with bleeding disorders

Haemophilia is a disease which primarily affects men because of how it is inherited. However, women who carry haemophilia A or B genes, often known as haemophilia carriers, might have low levels of factor VIII (8) or IX (9). These women would be diagnosed with mild haemophilia and might have abnormal bleeding symptoms.

Women and men are affected equally by von Willebrand disease, platelet disorders, and the rare bleeding disorders.

Women with bleeding disorders often have heavy and prolonged menstrual periods.

Bleeding disorders can also have implications for pregnancy. There is an increased risk of excessive bleeding during and after childbirth. There is also a chance of the baby being affected by the bleeding disorder. We run dedicated clinics for women with bleeding disorders.

Management of heavy periods (menorrhagia)

Sometimes, affected women do not realise that their periods are heavier than many other women’s. Generally, the menstrual cycle is abnormally heavy if:

• the periods last more than 7 days
• sanitary pads have to be changed more often than every 2 hours
• clots bigger than a 10p coin are passed 

We encourage all women with heavy periods as part of a bleeding disorder to try taking tranexamic acid. Usually the dose is 1g (2 tablets), 3 times a day, on the days of heavy bleeding. This often reduces the amount of blood lost. If just taking tranexamic acid alone is not enough, or you cannot tolerate it, another option is hormonal contraception, as this usually reduces blood loss or stops periods completely.

Contraceptive options include:

• an oral (by mouth) contraceptive pill (combined or progesterone only)
• an intrauterine coil or device (such as Mirena^® or Kyleena^®)
• a contraceptive injection or implant

The NHS has more information about types of contraceptive.

Other options for reducing menstrual losses include:

• desmopressin injections (in haemophilia A and some cases of von Willebrand disease)
• injections of factor replacement
• gynaecological procedures

It is also important to watch out for iron deficiency anaemia. Iron tablets or iron infusions can treat or prevent this.

If you have a bleeding disorder and have heavy periods, please tell the haemophilia team. We can see you in one of the women’s bleeding disorder clinics. It is also important to check there are no other gynaecological causes of heavy periods, so we might suggest that you have a pelvic ultrasound scan or see a gynaecologist.

The Haemophilia Society has more information about women living with bleeding disorders.

Read the NHS information about heavy periods.

Pregnancy and bleeding disorders

There can be complications with pregnancy in women who:

• are carriers of haemophilia
• have any bleeding disorder
• have a family history of a bleeding disorder
• have a partner with a bleeding disorder

The complications include:

• an increased risk of excessive bleeding at childbirth
• a possible chance of the baby inheriting the bleeding disorder

For women who would like to know more about possible complications of a bleeding disorder in future pregnancies, we offer pre-pregnancy (or ‘pre-conception’) counselling appointments in clinic.

When there is a chance that future children could inherit a severe bleeding disorder, we can sometimes refer you to the clinical genetics team for a preimplantation genetic diagnosis (PGD). This can also be called a preimplantation genetic treatment (PGT). This is a special form of IVF (in vitro fertilisation), where only embryos that are unaffected by the bleeding disorder are implanted. This makes sure that a baby created from these embryos is unaffected.

You can read more about having PGD at our hospitals.

We can also advise women with bleeding disorders who are already pregnant. There are 2 main parts to this.

Determining if the baby could be affected by the bleeding disorder

If there is a chance that the baby could inherit a severe or significant bleeding disorder, we can test the baby, before it is born, to see if it is affected. This is known as ‘prenatal diagnosis’.

• For women who are carriers of haemophilia: we can determine the sex of the baby by either a maternal blood test from 9 weeks of pregnancy (free fetal DNA, or ffDNA), or at the second trimester routine scan.
• For all pregnant women whose baby might be affected by a significant bleeding disorder: either chronic villus sampling (CVS) or amniocentesis can be arranged in our fetal medicine unit to check if the baby is affected.

For babies who are at risk of having a bleeding disorder, we can usually take a blood sample from the umbilical cord after birth. We can test this to find out if they have inherited the condition. This is known as taking ‘cord bloods’.

Devising a bleeding disorder delivery plan

It is very important to carefully plan any delivery of a baby for people who are affected by a bleeding disorder, or who are carrying a baby with a chance of inheriting a bleeding disorder. This is to minimise the risk of excessive bleeding for the mother, and for the baby (if appropriate).

We carefully discuss and create a written bleeding disorder delivery plan. This is given to everyone who may be involved in the birth, usually in the third trimester, before the delivery.

A bleeding disorder delivery plan includes:

• the planned location of the birth
• the planned method of delivery of the baby
• whether spinal or epidural analgesia (anaesthetic) can be safely used
• whether any specific bleeding disorder treatment will be needed for the mother
• whether forceps and ventouse (‘kiwi’) can be used to deliver baby, if needed
• whether cord bloods should be taken to determine if the baby is affected by a bleeding disorder
• whether the baby should receive vitamin K via the normal intramuscular injection, or orally (by mouth)
• whether the mother can receive blood-thinning injections if needed
• contact details for the haemophilia team

You should let the haemophilia team know if you would like to be seen in the women’s bleeding disorder clinic for pre-pregnancy counselling.

The Haemophilia Society have more information about pregnancy and bleeding disorders.