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Relationships, sex and epilepsy
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Relationships
Many people with epilepsy have no problem in relationships. But you are not alone if you find managing relationships with your epilepsy hard.
More than a third of people with epilepsy think the impact it’s had on their relationships is the most challenging thing about their epilepsy.
New relationships
There is no right or wrong time to tell someone you have epilepsy when starting a new relationship. Some people find it easiest to be open about it straight away, and some need more time.
Telling your partner how epilepsy impacts you can help them support and understand you. Encourage them to ask questions so they know as much as possible.
It can also be useful to talk to someone other than your partner about your epilepsy.
Supporting a partner with epilepsy
Supporting someone with epilepsy can include anything from driving them to places, reminding them to take their medication or listening to their worries.
As the partner of someone with epilepsy you might find it useful to have someone else to talk to about your fears or concerns.
Epilepsy Action’s helpline is there for anyone affected by epilepsy, including partners, friends and family.
Other resources
Health Talk – information and different people’s experiences around relationships and how their epilepsy has affected this part of their lives.
Will having epilepsy affect my sex life?
Many people with epilepsy have a healthy sex life, but epilepsy can sometimes cause problems with sex.
More people with epilepsy have problems with their sex life than those who don’t have epilepsy.
These may include problems with:
- Becoming aroused
- Having an orgasm
- Having little or no interest in sex
- Pain during or after sex
- Getting or keeping an erection
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Epilepsy medicines
Some epilepsy medicines might affect your interest in, or ability to have sex. This is because the medicines change the hormone levels in your body and these hormones play a role in your sex life.
Some epilepsy medicines list sexual problems as a possible side effect. These include: gabapentin, pregabalin, phenytoin, topiramate, carbamazepine, clobazam and clonazepam.
Other medicines don’t list sexual problems as a side effect but they can reduce the level of testosterone in your body.
This could affect your interest in or ability to have sex. The medicines that can cause you to have low testosterone levels include phenobarbital, phenytoin and carbamazepine.
If you think your epilepsy medicine might be having an effect on your sex life, talk to your GP, epilepsy specialist nurse or epilepsy specialist.
It’s important not to make any changes to your epilepsy medicines without getting medical advice.
They will be able to talk to you about your treatment options and things that could help.
Epilepsy Action has more information about epilepsy medicines and pregnancy.
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The effect of epilepsy itself
The type of seizures you have, whether they are controlled by medicine, and which part of the brain is affected may all make a difference to whether your sex life is affected.
Some studies have suggested that temporal lobe epilepsy can affect the levels of sex hormone in the body. People with this kind of epilepsy may have more difficulties with sex.
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Worry about seizures
You might be worried about having a seizure during sex. Very few people have reported this happening. But worrying that this might happen could have an effect on your sex life.
If you do notice an increase in seizures relating to sex, it’s worth talking to your doctor.
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Depression and anxiety
People with epilepsy are more likely to be affected by depression and anxiety. If you’re feeling depressed or anxious, this could cause you to have less interest in sex.
Epilepsy Action has advice and links to more information about getting help with your mental health.
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Testosterone
Your body produces the hormone testosterone. Testosterone is responsible for many things that affect your sex life.
These include your interest in having sex, your ability to have sex and your fertility. If you have low testosterone levels, this may cause you to have problems with your sex life. This is true for people of all genders.
Treating sexual problems
Problems with sex can have a big impact on your quality of life. If you have any worries about your sex drive or your ability to have sex, you are not alone. A treatment can be found for most people with sexual problems. It’s worth talking to your GP. They can do an assessment to look at the possible causes and advise you about things that could help.
These might include:
- Making lifestyle changes
- Taking medicine to help with the problem
- Making changes to existing medicines or contraception you are using
- Talking therapies such as counselling or cognitive behavioural therapy (CBT).
Your GP can refer you to an epilepsy specialist for further advice if they think your problems are linked to your epilepsy or medicines. If it is safe to do so, your specialist may suggest making changes to your epilepsy medicine. It’s important not to make any changes to your epilepsy medicines without getting medical advice.
You can also access support and treatment for sexual health issues at a sexual health clinic. These can provide the same treatment you would get at your GP surgery. Many sexual health clinics offer a walk-in service.
You can search for a sexual health clinic near you or look for information about sexual problems on the NHS website.
If you become pregnant or are looking to get pregnant, we have information about pregnancy and fertility. Visit our page on epilepsy and starting a family, which has information for people of all genders.
Support and information
Institute of Psychosexual Medicine (IPM)
Provides a list of IPM trained specialists, some working privately and some with the NHS.
NHS Sexual Health Services
Offers advice on finding sexual health clinics and counselling.
CALM
Information and advice about erectile dysfunction.
Find relationship counselling services near you.
Information and different people’s experiences around relationships and how their epilepsy has affected this part of their lives
This information has been produced under the terms of the PIF TICK. The PIF TICK is the UK-wide Quality Mark for Health Information. Please contact website@epilepsy.org.uk if you would like a reference list for this information.
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