Contraception, fertility and pregnancy with epilepsy

Here young people talk about their experiences of different contraceptive methods and their thoughts on and experiences of fertility, pregnancy and having children.

Contraception

For women, there are interactions between some contraceptive methods and certain AEDs, whereas for men, their epilepsy medication does not interfere with contraception. Some methods of contraception are less effective when a woman is taking particular types of AED. However, there are many safe and effective contraceptive methods available for women with epilepsy (see the resources section for links to more information).

Most young women we spoke with who used a form of contraception were on the contraceptive pill. Those who were on the pill as well as particular types of AEDs said that they couldn’t rely only on the pill but had to use other methods to avoid pregnancy, usually condoms. This is because ‘enzyme-inducing’ AEDs (such as Tegretol; carbamazepine, Topamax; topiramate, Trileptal; oxcabazepine) can reduce the effectiveness of the pill. Lamotrigine can also interfere with the pill but the contraceptive pill may also reduce the effectiveness of lamotrigine.

Many women said that they and their boyfriends were fine about using condoms. One woman summed it up as’ ‘condoms are better than getting pregnant’.

Kirsty and her boyfriend are using condoms until her seizures are better controlled because the…

Age at interview 20

Gender Female

Age at diagnosis 19

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Charli’s on lamotrigine and the combined contraceptive pill. Her doctor suggested increasing the…

Age at interview 23

Gender Female

Age at diagnosis 18

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Bex is on two AEDs which could cause birth defects in babies. She says it’s important, but also…

Age at interview 20

Gender Female

Age at diagnosis 13

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Other contraceptive methods that women used were Depo contraceptive injections, the coil (also known as Intrauterine devices (IUD’s) or Intrauterine systems (IUS’s or Mirena coil)) and contraceptive implants. The injections and the coil are not affected by any AEDs, whereas the implant can be.

Rachael had bad experiences with the pill and the Depo injections but says the coil is the ‘best…

Age at interview 25

Gender Female

Age at diagnosis 21

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Many women we spoke with had been given information about contraception and AEDs by their doctors but several also said they had researched and read about it themselves from reliable sources, for example Epilepsy Action and Epilepsy Society websites. They said it was important to take the initiative to ask the doctor about contraception if the doctor hadn’t brought it up first. One woman had been given conflicting information about her AEDs and contraceptive choices by her neurologist and the epilepsy nurse, and found this really confusing. Another was on lamotrigine and the pill for years and nobody had told her she might get pregnant without extra contraceptive precautions.

Fertility

Certain AEDs may reduce sperm production in some men, which could reduce their fertility. Some women with epilepsy may have irregular periods or a condition called polycystic ovary syndrome. These can be side effects of some AEDs and are treatable, but can make becoming pregnant more difficult.

Nick is slightly worried about the effect of epilepsy medication on his fertility.

Age at interview 21

Gender Male

Age at diagnosis 15

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Pregnancy

Many young people we talked with said they wanted to have children one day in the future. Some said that they would think it through carefully with their partner and discuss it with their doctor. Many said that they were concerned about the effects their epilepsy medication, or having a seizure during pregnancy, could have on the baby, or how they would cope with labour.

Carole has always wanted to have children. She is concerned about the possible effects of her…

Age at interview 20

Gender Female

Age at diagnosis 18

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There are AEDs which are not usually prescribed for pregnant women or those trying to get pregnant because they can affect the baby’s growth and development. Discussing plans about pregnancy with a neurologist or epilepsy nurse is recommended well in advance. It is important never to suddenly stop taking AEDs but to discuss this first with a neurologist or GP.

Several women we spoke with were taking folic acid, even if they were not planning to get pregnant, in case of an unplanned pregnancy. Folic Acid reduces the risk of neural tube defects in a baby. All women planning a pregnancy are recommended to take Folic Acid and women with epilepsy are recommended a higher dose because some AEDs add to the risk of neural tube defects.

We also spoke with a couple of women who had been pregnant and had children. Both had healthy babies but their experiences of pregnancy had been very different. One woman described her pregnancy as ‘a constant worry’ and she also had several seizures during her pregnancy and also had a bad fall with a seizure. Another said she had no concerns during pregnancy and felt really well the whole time. Both women said they had received excellent NHS health care during their pregnancies.

When Donna and her husband started to plan for pregnancy, Donna had to gradually come off Epilim…

Age at interview 28

Gender Female

Age at diagnosis 3

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Donna fell down the stairs when she had a seizure during her pregnancy but the baby was fine.

Age at interview 28

Gender Female

Age at diagnosis 3

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Donna says her pregnancy was a constant worry and she had many seizures. She was well cared for…

Age at interview 28

Gender Female

Age at diagnosis 3

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Charli enjoyed being pregnant and felt really healthy.

Age at interview 23

Gender Female

Age at diagnosis 18

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See more experiences of pregnancy and women who have epilepsy.

Life with a baby or children can be difficult if the parent is having a lot of seizures or feeling tired and fatigued from the side effects of medication. Both women we spoke with had a lot of help from their families.

Donna was ‘over the moon’ when she had a healthy baby. She felt she missed out on a lot with her…

Age at interview 28

Gender Female

Age at diagnosis 3

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Charli describes how she explained to her 4-year-old son what epilepsy is and how ‘mummy’s brain…

Age at interview 23

Gender Female

Age at diagnosis 18

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See more experiences of parenting with epilepsy.

A few people we spoke with were worried about whether their children would have an increased chance of having epilepsy. Some very rare forms of epilepsy can be inherited but generally the relationship between epilepsy and inheritance is very complex and depends on the seizure type, age of onset and several other factors, many of which are unknown.