Sexual health, contraception and preparing for pregnancy: Information for patients with thalassaemia and sickle cell disorder : University College London Hospitals NHS Foundation Trust

Why is this important?

Awareness of sexual health and contraception is important to all sexually active people. If you have SCD or thalassaemia, it’s particularly important that you:

prevent sexually transmitted infections and any unplanned pregnancies
prepare for pregnancy, and
understand the risk of having a child with a major haemoglobin disorder.

Contraception allows you to choose whether and when to have a baby. Male and female condoms also protect you from sexually transmitted infections (STIs). For this reason, you should use condoms in addition to any other contraception you are using.

Why you should reduce your risk of sexually transmitted infections:

Your spleen may not work (hyposplenia) or it may have been removed (asplenia). Spleen is an important organ that helps to prevent infections.
You may have excess iron in your blood due to regular transfusions. This can cause bacteria to grow.
Infections can trigger a sickle cell crisis.

These are the things you can do to reduce your risk:

Protect yourself by using the right contraception. Condoms work well when used consistently and in the correct way.
Limit the number of sexual partners you have.
Talk to your partner openly before sexual activity about preventing STIs.
Be aware that alcohol and drugs affect your judgement. They reduce your ability to make good decisions or to knowingly consent to any activity, including sex.

If you are unsure whether you may have an STI, don’t rely on symptoms. Get tested instead.

Tell the health professionals you see about your contraception that you have SCD or thalassaemia. You should also let them know about any problems you may have had with contraception in the past. You can give them our contact details so we can discuss any concerns with them.

The full range of contraceptive choices is available to you. Here are some examples:

Barrier contraceptives, such as condoms (male or female), protect against STIs. They also reduce the risk of unplanned pregnancy.
Progesterone-only contraceptives for women are available in different forms. These can be tablets, injections and implants.
The combined oral contraceptive pill contains both progesterone and oestrogen. It is known as ‘the pill’ and it is one of the most effective contraceptives. The new generation pill contains lower oestrogen levels than the older version, and doesn’t cause blood clots.
Intrauterine devices, such as the Mirena® coil, are also used successfully in women with SCD or thalassaemia.

Each of these methods of contraception has their own advantages and disadvantages. To find out more, please contact your haematology doctor, your GP or a local sexual health clinic.

You can also request an appointment with a fertility consultant who sees patients in our Wednesday evening clinic. Please talk to your haematology doctor or clinical nurse specialist (CNS). Or call the haematology advice line on 020 3447 7359.

Emergency hormonal contraception is known as ‘the morning-after pill’. You can take it up to 72 hours after unprotected sex but it works best the earlier it is taken. It’s available free of charge from your GP and some chemists.

It’s important that you are aware of possible complications pregnancy can cause and how they can affect both you and your baby. For example:

People with SCD may have severe crises when pregnant.
Both people with thalassaemia and people with SCD are at risk of giving birth prematurely.

Some of the medicines you may be taking can also harm the developing foetus. These include hydroxyurea (hydroxycarbamide), bisphosphonates, deferasirox and deferiprone.

Your haematology doctor will give you more information. You can also find more information on our web pages 'Thalassaemia and pregnancy' and 'Sickle cell disorder and pregnancy'.

Follow the steps below before you get pregnant to reduce the risks to both you and your baby

1. Tell your doctors in the sickle cell or thalassaemia clinic that you are planning a pregnancy. They can make sure that:

Your partner has the appropriate screening tests.
Both you and your partner know about the chances of your baby having SCD or thalassaemia, and the options available to you. Your doctor will refer you to the relevant clinic for this. You can have an appointment, with or without your partner, at a very short notice.

2. Your haematology team will review your vaccinations and medicines. Some of the medicines may not be safe to your baby and will need to be stopped. For example, you should stop hydroxyurea three months before conception.

3. If you are receiving regular transfusions, we will need to optimise your iron levels. This is because chelation therapy will be stopped for most of pregnancy.

4. We will also carry out extra tests, such as your red cell antibody status. This is important as some antibodies may have formed after previous blood transfusions or pregnancies. We can then stop these antibodies from crossing into your baby’s blood.

If you get pregnant unexpectedly, tell both your haematology doctor and your GP as soon as you can. We can then reduce the risks to both you and your baby as much as possible.

You will have a consultant-led care in the high-risk obstetrics clinic. You will regularly see a consultant obstetrician in this clinic. This is a doctor who looks after pregnant women. You will also have an appointment with an anaesthetist with an interest in pregnancy.
You will see your sickle cell or thalassaemia doctor monthly.
If you are at a high risk of a thrombosis (blood clot) during pregnancy, you may see a different haematology doctor who specialises in this area.
The blood for your transfusions will need to be prepared in a specific way. We will need to screen it for cytomegalovirus (CMV), a virus that can be harmful to the unborn baby.

Sickle Cell Society

Tel: 020 8961 7795

Email: info@sicklecellsociety.org

Website: sicklecellsociety.org

UK Thalassaemia Society

Tel: 020 8882 0011

Email: office@ukts.org

Website: ukts.org

University College London Hospitals NHS Foundation Trust cannot accept responsibility for information provided by external organisations.

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