- Introduction to Girl Talk
- Puberty
- Periods and epilepsy
- Epilepsy and your sex life
- Contraception
- Anti-epileptic drugs and pregnancy
- Becoming a mum
Introduction to Girl Talk
If you’re a teenage girl with epilepsy, you might have all sorts of questions about how epilepsy could affect you and your body. Will epilepsy affect your periods? Will epilepsy affect your choice of contraception? Will you be able to have children? Will they inherit your epilepsy?
In this section, we’ll try to answer all of your questions. If you still have some unanswered questions, here’s a list of ways you can find out more.
- Ask Debbie or Danny, our agony aunt and uncle for young people with epilepsy
- Text your question to an epilepsy adviser – 07797 805 390
- Send an email to an epilepsy adviser – helpline@epilepsy.org.uk
- Speak to someone on the Epilepsy Helpline, freephone 0808 800 5050 (if you live in the UK) or +44 113 210 8850 (if you live outside the UK). Your call will be totally confidential.
- Speak to your doctor or epilepsy nurse
- Send a tweet to @epilepsyadvice
Remember, no question is silly. It’s your life and you have a right to know how epilepsy might affect it.
Puberty
Puberty is when your body starts to change from a child to an adult. Your body begins to produce sex hormones and these cause your body to 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. However, if you have delayed puberty (starting after the age of 14), this may be due to your epilepsy. Having lots of seizures during childhood or taking anti-epileptic drugs can sometimes cause your body to 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. They’ll look into 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.
Can puberty affect my epilepsy?
You might have more seizures than usual during puberty, caused by the changing levels of hormones in your body. You might also feel more stressed and anxious than usual during puberty. Stress and anxiety trigger seizures in some people.
If, for any reason, you start to have more seizures than normal, it’s worth making an appointment with your doctor or epilepsy specialist. They’ll look into ways they can help.
Periods and epilepsy
What are 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.
If you have epilepsy, you might find that your periods happen more often than every 24 days or less often than every 35 days.
Many 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 many 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, seizure patterns 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
In a small number of 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 the 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. There’s also more chance if you take the anti-epileptic (AED) drug sodium valproate, especially if you’ve taken it from a young age. If sodium valproate is thought to be the cause of the PCOS, it goes away when you stop taking sodium valproate.
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 would help you and your doctor to see if there is a pattern. Your doctor may then be able to discuss possible treatments with you.
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.
Epilepsy and your sex life
Many people with epilepsy have normal sexual relationships. But, it’s not unusual to worry that your epilepsy might affect your sex life.
Before starting a sexual relationship
It’s not uncommon to worry that you’ll have a seizure while you’re having 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.
Sexual problems
Most of us have problems with our sex life from time to time. This might include having no interest in having sex. Common causes include stress, tiredness, illness and alcohol. If you have epilepsy and experience 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 cause some women to have less interest in sex.
- Your seizures might affect the way that 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. They’ll look for ways to help you.
Contraception
Contraception is used across the globe, to stop unwanted pregnancies. Planning your contraception before you have sex is a really good idea, especially if you have epilepsy. This will help to protect you from an unplanned pregnancy.
Anti-epileptic drugs and contraception
Some anti-epileptic drugs (AEDs) make certain types of contraception work less well than they should. It’s important to know which types would and wouldn’t work for you.
Your family doctor or staff at your local family planning clinic can help you choose the best contraception for you. Make sure they know which AEDs you take.
Contraception choices
The following tables will help you work out which forms of contraception work best with your anti-epileptic drugs (AED). If you take more than one AED, you need to check the advice for each of them.
If you take clobazam, clonazepam, ethosuximide, gabapentin, lacosamide, levetiracetam, pregabalin, sodium valproate, tiagabine, vigabatrin or zonisamide, go to Table One.
If you take carbamazepine, eslicarbazepine acetate, oxcarbazepine, phenobarbital, phenytoin, primidone, rufinamide or topiramate, go to Table Two.
If you take lamotrigine, go to Table Three.
Table one
| If you take clobazam, clonazepam, ethosuximide, gabapentin, lacosamide, levetiracetam, pregabalin, sodium valproate, tiagabine, vigabatrin or zonisamide |
These types of contraception should work well for you:
The following type of contraception may work for you (but follow the link for further information): These types of contraception would not work well for you:
|
Table two
| If you take carbamazepine, eslicarbazepine acetate, oxcarbazepine, phenobarbital, phenytoin, primidone, rufinamide or topiramate |
These types of contraception should work well for you:
These types of contraception may work for you (but follow the links for further information):
These types of contraception would not work well for you:
|
Table three
| If you take lamotrigine |
These types of contraception should work well for you:
The following type of contraception may work for you (but follow the link for further information):
These types of contraception would not work well for you:
|
Additional contraception safety measures
If you’re having sex and are worried that your anti-epileptic drugs (AEDs) might make your contraception less effective, get advice from your doctor. You could use extra contraception like a condom or Femidom until you’ve had some advice. But whatever you do, don’t stop taking your AEDs. This could cause you to have more seizures.
Becoming a mum
You might not be ready to have children yet, but it’s something you might think about in the future. As a woman with epilepsy, it’s a really good idea for your pregnancies to be planned.
Planning for future pregnancies
Many women with epilepsy have normal pregnancies and healthy children. But it’s important to know that taking anti-epileptic drugs (AEDs) while you’re pregnant can sometimes cause problems for an unborn child. In severe cases this can include physical or learning disabilities. The risks of this happening are quite small, but it’s important to be prepared and have your facts straight.
If you’ve had epilepsy for a while, your teens are a good time to ask your doctor or nurse to review your epilepsy and AEDs. If they believe that the AEDs you take aren’t suitable for your future as a possible mother, they may suggest that you change them.
There’s always a risk that changing AEDs will lead to you having more seizures. If you’re thinking about having children in the future, you may want to make changes to your AEDs sooner rather than later. That way by the time you are ready to start planning a pregnancy, your AEDs will be one less thing to have to think about.
It’s also a good idea to make any changes to your AEDs before you start a sexual relationship. This way, if you do become pregnant by accident, you’d already be taking the most suitable AEDs to control your seizures during pregnancy.
If you think you’re pregnant, or discover you’re pregnant before you’ve had chance to talk to a doctor about your AEDS, don’t panic. Keep taking your AEDs as normal and make an appointment to see your doctor. If you stop taking your AEDs, you could have more seizures, which might cause more harm to you and the baby than the AEDs might.
Sodium valproate
If you take sodium valproate (Epilim), you’re at slightly more risk of having difficulty getting pregnant than women who take other anti-epileptic drugs (AEDs). You’re also at a slightly higher risk of having a baby with a birth problem. Why not make an appointment with your doctor or epilepsy specialist to discuss these risks? They may suggest that you change to a different AED before you start thinking about having a baby.
Remember – you should never stop taking your (anti-epileptic drugs) AEDs unless your doctor advises you to. Suddenly stopping your AEDs might cause you to have more seizures.
If you’d like to speak to an adviser on the Epilepsy Helpline, to find out more about epilepsy, seizures, AEDs and pregnancy, call free on 0808 800 5050 (in the UK) or +44 113 210 8850 (outside the UK).
Getting pregnant
If the time comes that you decide you want to be a mum, there’s lots to think about. For example, will epilepsy affect your chances of getting pregnant? Will your children inherit your epilepsy?
Make sure that you check out our information about becoming a mum on our web pages about epilepsy and having a baby.