There are some particular things you’ll need to know about if you’re a female with epilepsy. The list includes:
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 have delayed puberty (starting after the age of 14), this may be because of your epilepsy. Having lots of seizures during childhood or taking anti-epileptic drugs (AEDs) can sometimes make your body start producing sex hormones later than in some other girls.
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.
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!
General information about periods
When you go through puberty, you start having periods (also known as the time of the month). This is when you bleed from your vagina 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.
Periods and epilepsy
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 anti-epileptic drugs. 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 are 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.
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.
If you have temporal lobe epilepsy, there’s slightly more chance that you’ll develop polycystic ovary syndrome (PCOS) than other girls.
Find out more about temporal lobe epilepsy
There may be more chance of developing PCOS if you take the anti-epileptic (AED) drug sodium valproate, especially if you’ve taken it since you were young. If sodium valproate may be part of the cause of the PCOS, it goes away when you stop taking that drug.
Sodium valproate can also be called Epilim or Epilim Chrono. It is important that you don’t suddenly stop taking your AEDs, as your seizures might return or get worse. You should talk to your doctor, who can help look at other possible AEDs.
Sodium valproate is associated with an increased risk of harm to babies if taken during pregnancy. If you are a woman capable of becoming pregnant, sodium valproate should only be prescribed if no other epilepsy medicine suits you.
If you are pregnant or planning a pregnancy and you take sodium valproate, seek advice from your doctor and do not stop taking your medication.
Information about sodium valproate
The Medicines and Healthcare Products Regulation Agency (MHRA) have published some more detailed information about sodium valproate. If you are taking sodium valproate, or your doctor is considering prescribing sodium valproate for you the MHRA advise you to read this booklet along with the patient information leaflet. This is because they are advising that, if you are a woman capable of becoming pregnant your doctor should only prescribe sodium valproate if nothing else works for you.
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 polycystic ovary syndrome (PCOS), your doctor may advise you to change your AEDs. Or they may suggest you take the combined oral contraceptive pill, which may help to protect against PCOS.
Seizures and your menstrual cycle
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.
Find out more 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.
Find out more about epilepsy and periods
There’s lots of pressure these days around girls and 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. The fact is, you’re no more likely to have a seizure during sex than at any other time. 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.
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 anti-epileptic drugs 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.
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 AEDs, some types of contraception won’t work as well for you as for other women. For example some AEDs reduce how well the Pill works, which could lead to an unexpected pregnancy. And some contraception can make AEDs 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.
Find out more about epilepsy and contraception
Anti-epilepsy drugs and pregnancy
If you have epilepsy, a doctor’s advice is to avoid pregnancy until you’ve had pre-conception counselling. This is because having seizures during pregnancy, and also taking some AEDs such as sodium valproate, can cause possible risks for an unborn baby. If your pregnancy is planned, these risks can be reduced.
So if you are 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 AEDs for this. You’ll want ones which give you the best seizure control balanced against the fewest risks to an unborn baby.
If you do find you’re pregnant, try not to panic! And whatever you do, make sure to keep taking your AEDs 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 them, you will be at a high risk of having a seizure. This in itself could be a risk to you and the baby.
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 one of these, check whether they go with your epilepsy medicine.
Find out more about epilepsy and pregnancy.
Epilepsy Action would like to thank epilepsy specialist nurses Roz Atkinson, Janine Winterbottom and Carmel McGinn of Cardiff, Liverpool and County Fermanagh for their valuable contributions to this information.
This information has been produced under the terms of The Information Standard.
- Updated December 2014To be reviewed December 2017