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of everyone affected by epilepsy

 

For the girls

There are some particular things you’ll need to know about if you’re a female with epilepsy. The list includes:

  • Puberty
  • Periods
  • Sex life
  • Contraception
  • Your epilepsy, epilepsy medicine and pregnancy

Puberty

Puberty is when your body starts to change from a child to an adult. You begin to produce sex hormones and these make your body change. For example, you start to grow more body hair, your breasts grow and you start having periods. You might also feel more emotional and have mood swings. Most girls begin puberty around the age of 12, but some start earlier and some later. Everyone grows and changes at different rates.

Can my epilepsy affect puberty?

Having epilepsy doesn’t usually affect puberty. But if you haven’t shown any signs of starting puberty by the time you’re 14, talk to your doctor or specialist nurse. They’ll try and find out the possible reasons for this.

Can puberty cause epilepsy?

Puberty doesn’t cause epilepsy. But some girls find that changes in their hormones can trigger seizures. Some types of epilepsy syndromes usually begin during your teenage years. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. Epilepsy syndromes that may begin during teenage years include juvenile myoclonic epilepsy and juvenile absence epilepsy.

Find out more about juvenile absence epilepsy and juvenile myoclonic epilepsy.

Can puberty affect my epilepsy?

The changes in your hormone levels during puberty might cause you to have more seizures. And you might feel more stressed and anxious. There could be a few different reasons for this. Your hormone changes can affect how you feel. Having more seizures than usual can be stressful and can make you feel anxious. And just being a teenager can be pretty stressful in itself.

Periods

General information about periods

When you go through puberty, you start having periods (also known as the time of the month). This is when the lining of your womb breaks down and this blood comes out of your vagina. This lasts for a few days, usually each month. The time between the start of one period and the start of the next is called the menstrual cycle. Most girls have a menstrual cycle that is between 24 and 35 days. The average is 28 days.

Will epilepsy affect my periods

If you have epilepsy, your periods might happen more often than every 24 days or less often than every 35 days. Most girls have regular periods. This means that the number of days between the start of one period and the start of the next is the same each time. If you miss a period, this is sometimes a sign that you’re pregnant. However, there are lots of other reasons why you might not have a period or why your period is late. Some girls don’t have regular periods. The number of days between the start of each period can be different each time. Some girls may even go for several months without having a period, even though they aren’t pregnant.

If you have epilepsy, you have a slightly higher risk of having irregular periods then other girls, especially if you have frequent seizures.  Irregular periods may be caused by epilepsy itself, or your seizure pattern or even epilepsy medicine. It’s not unusual for periods to be irregular when you start having them. It can take up to two years for your body to settle into a regular pattern. If you’re still having irregular periods after two years, it would be a good idea to talk to your doctor. They’ll look into all the possible reasons for this.

Will my periods affect my epilepsy?

You may notice that you have more seizures than usual at certain times of the month. This could be at the start of your period, around the middle of your menstrual cycle, or in the week before your period. These seizures could be caused by the changing levels of hormones in your body.

If you think there’s a link between your seizures and menstrual cycle, it’s a good idea to keep a seizure diary for three months. This will help you and your doctor to see if there is a pattern. Your doctor may then be able to discuss possible treatments with you.

Epilepsy Action has more information about keeping a seizure diary

Premenstrual tension (PMT)

It’s not unusual to feel moody, bad tempered, bloated, stressed and anxious in the days leading up to your period. This is known as premenstrual tension (PMT).

Some people with epilepsy find that feeling stressed or anxious makes them more likely to have seizures. So you might notice that you have more seizures if you have PMT. Talk to your GP if your PMT is causing you problems.

Polycystic ovary syndrome

For some girls, irregular periods are caused by a medical condition called polycystic ovary syndrome (PCOS). Girls with PCOS have lots of tiny cysts on their ovaries and unusual hormone levels. This can cause symptoms like weight gain, spots and more hair than usual on your face and body.

Any woman or girl can be affected by PCOS, but it’s slightly more common if you have epilepsy.

There may be more chance of developing PCOS if you take the epilepsy medicine sodium valproate. Sodium valproate has other names, including Epilim and Epilim Chrono.

It’s worth talking to your doctor if you notice any of the following:

  • Your periods are often less than 21 days apart
  • Your periods are often longer than 35 days apart
  • Your periods last longer than seven days

Your doctor can look into the possible causes and suggest treatments that may help you to have more regular periods. If you do have PCOS, your doctor may advise you to change your epilepsy medicine. Or they may suggest you take the combined oral contraceptive pill, which may help to protect against PCOS.

It is important that you don’t suddenly stop taking your epilepsy medicine, as your seizures might return or get worse. You should talk to your doctor, who can help look at other possible epilepsy medicines, if that is the right thing to do.

See below for more information on sodium valproate.

Sex life

There’s lots of pressure these days around sex. It’s really important to know that if and when you want to have sex, this should be completely your choice. It should not be something you do because someone else thinks it’s a good idea. This is of course true whether you have epilepsy or not.

It’s not unusual to worry that your epilepsy might affect your sexual relationships. But sex is not a problem for many people with epilepsy.

Seizures during sex

Some people with epilepsy do worry that they’ll have a seizure during sex. But it’s very rare to have a seizure triggered by sex. It’s important that you don’t feel stressed, worried or pressurised into having sex. Stress and worry might make you more likely to have a seizure.

Sexual problems

Most people have problems with their sex life from time to time. This might include having no interest in having sex. Common reasons for the lack of interest can be stress, tiredness, illness and alcohol. If you have epilepsy and feel like you’re having sexual problems, there could be some other reasons why.

Here are some examples:

  • Your own feelings about your epilepsy might make you lose interest in sex
  • You may be taking certain epilepsy medicine which can result in some women having less interest in sex
  • Your seizures might affect the way your body releases sex hormones

If you have any worries about your sex life, you’re not alone. It’s really worth talking to your doctor about your worries. They’ll look for ways to help you.

Contraception

If you’re having sex and don’t want to get pregnant, you need to find contraception that works well for you. If you do want to get pregnant, it’s important to make sure that your pregnancy is well planned. 

If you take epilepsy medicine, some types of contraception won’t work as well for you as for other women. For example some epilepsy medicines reduce how well the Pill works, which could lead to an unexpected pregnancy. And some contraception can make epilepsy medicines work less well. This could lead to you having more seizures.

Remember that all the advice you hear about “safe sex” and sexually transmitted infections applies to you as well as anyone else. It is good advice always to use a condom. 

Your epilepsy, epilepsy medicines and pregnancy

If you have epilepsy, medical advice is to avoid pregnancy until you’ve had pre-conception counselling. This is because having seizures during pregnancy, and also taking some epilepsy medicines, can cause possible risks for an unborn baby.  If your pregnancy is planned, these risks can be reduced. 

So if you’re still a teenager and think you may want to have children at some point in the future, it would be good to talk to your epilepsy nurse or neurologist. You could decide together whether you’re on the best epilepsy medicine for this. You’ll want an epilepsy medicine that gives you the best seizure control balanced against the fewest risks to an unborn baby.

If you do find you’re pregnant, and it was unplanned, try not to panic! And whatever you do, make sure to keep taking your epilepsy medicine at least until you’ve been able to talk to a health practitioner about this. This could be your GP, but would ideally be your epilepsy nurse or neurologist. If you suddenly stop taking your epilepsy medicine, you’ll be at a high risk of having a seizure. This in itself could be a risk to you and the baby. 

Epilepsy Action has more information about epilepsy medicines and pregnancy

Information about sodium valproate

The Medicines and Healthcare Products Regulation Agency (MHRA) have published some detailed information about sodium valproate. Doctors in the UK have been advised not to prescribe valproate to girls, women who could get pregnant, or women who are pregnant. If you fit into one of these groups, your doctor should only prescribe valproate to you if other epilepsy medicines do not suit you.

 

Emergency contraception or the morning after pill

Emergency contraception can be used after unprotected sex or when your planned contraceptive has failed, to prevent pregnancy. Before you use it, check with the pharmacist whether it goes with your epilepsy medicine.

Find out more about epilepsy and pregnancy.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact the Epilepsy Action Helpline on freephone 0808 800 5050.

Code: 
F118.03
Event Date: 
Thursday 26 November 2015 - 13:43

Epilepsy Action would like to thank epilepsy specialist nurses Neil Williamson at University Hospital Lewisham and Ruth McNulty at St Luke’s Hospital, Bradford for their contribution to this information. They have declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated June 2018
    To be reviewed June 2021

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