Sickle Cell Disease and Women's Health: Periods, Contraception and Pregnancy

TL;DR: Sickle cell disease (SCD) is most common in sub-Saharan Africa, and it touches every part of women's health. Many women with SCD notice pain crises around their periods. Most contraceptive methods are safe, and UK guidance rates progestogen-only pills, the implant and the hormonal coil as the most straightforward choices. Pregnancy with SCD carries higher risks, so planning ahead with a specialist team makes a big difference. Knowing your genotype, and your partner's, helps you make informed choices about children.

If you live with sickle cell disease, you already know your body better than most textbooks do. You know what dehydration, cold weather or a long, stressful week can set off. What often gets less attention is how SCD and your reproductive health shape each other: your period, your contraception, and what happens if you decide to have a baby.

This guide is for women with SCD, for women with sickle cell trait (AS), and for anyone in a genotype conversation with a partner or family. The aim is information you can take into the room with your doctor, so you can plan rather than worry.

How common is sickle cell disease?

Sickle cell disease is one of the most common inherited conditions in the world, and Africa carries most of it. The World Health Organization estimates that about 7.7 million people live with SCD worldwide, around 80% of them in sub-Saharan Africa. Nigeria has the highest burden of any country, with an estimated 150,000 babies born with SCD every year.

Sickle cell trait, where you carry one sickle gene and one usual gene (AS), is far more common. A 2025 review of studies across Nigeria found that about 21% of children and adolescents had sickle cell trait. In the United States, the CDC reports that about 1 in 13 Black or African American babies is born with sickle cell trait. Carrying the trait does not mean you have the disease, and the trait never turns into it.

Periods and sickle cell crises

If your crises seem to cluster around your period, you are not imagining it. In a 2025 study of 211 women and girls with SCD across 13 US sickle cell centres, 64% reported sickle cell pain around their periods, yet only about 19% were using contraception. Some women find it hard to tell where period cramps end and a crisis begins, because the two can arrive together.

Researchers are still working out why this happens, but the message is clear: menstrual pain in SCD deserves attention from your haematology team, not just a shrug and a painkiller.

A few things that can help:

• Track the pattern. Note when crises start relative to your period, how heavy your flow is, and what helped. Patterns over three or four cycles are far more useful to a clinician than memory alone.
• Keep up the basics around your period. The NHS advice for preventing crises, such as drinking plenty of fluids, dressing warmly and avoiding sudden temperature changes, matters just as much during your period.
• Ask about heavy bleeding. SCD already lowers your blood count, so heavy periods can push anaemia further. Our guides on heavy periods and iron deficiency anaemia explain the signs, but check with your team before taking iron, because not everyone with SCD needs it.
• Ask whether hormones could help. Some contraceptive methods lighten periods or stop them altogether, which may ease period-linked pain. That is a conversation worth having even if you are not worried about pregnancy.

Which contraception is safe with sickle cell disease?

Most methods are safe with SCD. The UK Medical Eligibility Criteria (UKMEC), the guidance UK clinicians use, puts the progestogen-only pill, the implant and the hormonal coil in category 1 (no restriction), and combined methods, the injection and the copper coil in category 2 (benefits generally outweigh risks).

Here is how the UKMEC 2025 summary tables rate each method for sickle cell disease:

• Category 1 (no restriction): progestogen-only pill, implant, hormonal coil (LNG-IUD).
• Category 2 (benefits generally outweigh risks): combined pill, patch or ring, the progestogen injection (Depo-Provera), and the copper coil.

A few details are worth knowing. Combined methods contain oestrogen, which raises the risk of blood clots, and SCD already carries a higher clot risk. The injection moved from category 1 to category 2 in the 2025 update because of evidence of a small increase in clot risk, although UKMEC also notes limited evidence that it may reduce sickle crises. And the copper coil can make periods heavier, which matters when you already live with anaemia. The hormonal coil, by contrast, is generally linked to lighter bleeding.

If you have sickle cell trait rather than the disease, UKMEC 2025 notes a small increase in clot risk with the trait and suggests prioritising alternatives to combined hormonal contraception. For a side-by-side look at every option, see our guide to contraception methods compared.

Pregnancy with sickle cell disease

Many women with SCD have healthy pregnancies and healthy babies. It is also true that the risks are higher, and being clear about them is what keeps you safe. The WHO says that pregnant women with SCD are 4 to 11 times more likely to die than those without the condition. In 2025 it issued its first global guideline on caring for women with SCD in pregnancy.

The Royal College of Obstetricians and Gynaecologists (RCOG) lists more frequent pain crises, worsening anaemia, chest and lung problems, blood clots, pre-eclampsia, slower growth of the baby, and early labour as the main risks. None of these are certain. They are the reasons your care looks different.

Planning before you conceive

If you can, talk to your sickle cell team before you start trying. RCOG advice includes:

• Reviewing your medicines. If you take hydroxycarbamide (hydroxyurea), RCOG advises stopping it and continuing contraception for 3 months before trying to conceive. Do not stop any medicine without talking to your team first.
• High-dose folic acid. Women with SCD are advised to take 5 mg of folic acid daily, which is higher than the usual pregnancy dose. The NHS confirms this needs a prescription from a GP.
• Vaccines and antibiotics. Making sure flu, pneumonia and hepatitis B vaccines are up to date, and usually taking a daily antibiotic to lower infection risk.
• Testing your partner. If your partner is not a carrier and does not have SCD, your baby will not have SCD.

During pregnancy

Expect more appointments, extra scans to check your baby's growth, and care from a team that includes an obstetrician, a midwife and a haematologist. RCOG advises low-dose aspirin to lower the risk of pre-eclampsia. The WHO guideline also covers iron and folic acid, infection and clot prevention, transfusions and closer monitoring of mother and baby. If you are unsure what each specialist does, our guide to pregnancy care specialists explains the roles.

Tell your team straight away if you have a crisis, a fever, chest pain or breathlessness, or any bleeding. These are reasons to be seen urgently, not to wait for your next clinic visit. Because Black women already face higher risks in pregnancy, our piece on Black maternal health covers how to speak up and be heard.

Genotype, carrier testing and the conversations that follow

In Nigeria, "What is your genotype?" is a question many couples hear long before a wedding, sometimes from parents, pastors or imams as much as from doctors. It can feel heavy, but the science underneath is simple.

If both partners carry the sickle gene (for example, both are AS), each pregnancy has a 1 in 4 chance of a child with SCD, a 2 in 4 chance of a child with the trait, and a 1 in 4 chance of a child with neither. Those odds reset with every pregnancy.

Knowing your status gives you options:

• Get tested. A simple blood test tells you your genotype. In the UK, you can ask your GP for carrier testing at any time, and pregnant women are offered screening as part of antenatal care.
• Talk to a counsellor together. A genetic counsellor or specialist can explain your results and the tests available during pregnancy. Our guide to genetic screening in pregnancy walks through what those tests involve.
• Make the choice that fits your life. Couples respond in different ways, and all of them deserve respect. A genotype result is information for planning. It is never a judgement of your worth or your love.

Living fully with sickle cell

SCD asks a lot of you, and it is fair to want care that sees all of you, including your periods, your contraception and your plans for a family. Keep a record of your crises and your cycle, bring your questions, and ask for a haematologist and a gynaecologist to talk to each other if your care feels split.

Asele can help with the record-keeping. Cycle tracking and symptom logging let you see whether crises line up with your period, and the Asele Health Brief turns those notes into a pre-visit summary you can hand to your doctor. If you want to talk something through first, Amara can chat with you in Yoruba, Hausa, Igbo, Swahili, French or English. You can find us at Asele.

This post is education, not medical advice. If you have sickle cell disease, always follow the advice of your own specialist team, and seek urgent care for severe pain, fever, chest pain, breathlessness or bleeding in pregnancy.

References

1. World Health Organization. "WHO issues first global guideline to improve pregnancy care for women with sickle cell disease." 2025. who.int
2. Centers for Disease Control and Prevention. Data and statistics on sickle cell disease. cdc.gov
3. Centers for Disease Control and Prevention. What is sickle cell trait? cdc.gov
4. Issa A, et al. "Prevalence of sickle cell disease and sickle cell traits among children and adolescents in Nigeria: a systematic review and meta-analysis." Systematic Reviews, 2025. pmc.ncbi.nlm.nih.gov
5. Oluwole EO, et al. "Feasibility and acceptability of early infant screening for sickle cell disease in Lagos, Nigeria: a pilot study." PLOS ONE, 2020. pmc.ncbi.nlm.nih.gov
6. Rush G, et al. "Role of Menstrual Bleeding Assessments in Sickle Cell Clinics." JAMA Network Open, 2025. pmc.ncbi.nlm.nih.gov
7. College of Sexual and Reproductive Healthcare. UK Medical Eligibility Criteria for Contraceptive Use (UKMEC) 2025, summary tables. cosrh.org
8. Royal College of Obstetricians and Gynaecologists. Sickle cell disease and pregnancy (patient information). rcog.org.uk
9. NHS. Sickle cell disease. nhs.uk
10. NHS. Pregnancy vitamins and supplements. nhs.uk