• My epilepsy affects my sex life but I'm not sure what to do. Have you any advice?

    My epilepsy affects my sex life but I'm not sure what to do. Have you any advice?

    For you to feel confident, it’s vital that you’re fully informed about your health. Make a list of all the questions you have in your mind, and ask your GP.


    Question for JulieQuestion:

    I'm having difficulty in my relationship at the moment. It's a very complicated situation so I hope you don't mind the long explanation.

    I have epilepsy, and have done since I was 13, I am now almost 30. When I was 24 a previous boyfriend had sex with me after a seizure when I was unconscious and I felt very scared that someone I loved and trusted would do this whilst I was in this state. However, he said he did not realise I was in this state.

    Approximately a year after this I had a fling with another man and whilst he was giving me oral sex I had a full blown seizure. I had no idea seizures could happen during sex and this was very upsetting and humiliating for me. I then decreased my sexual activity after this.

    When I met my current boyfriend I was told that what they thought was epilepsy is not actually epilepsy at the start of our relationship. I felt huge relief. I told my current boyfriend about what had happened previously on both occasions and I don't know if it was a male pride thing or what but I rejected the idea of receiving oral sex and he was upset by this - he felt that I had received it from someone else and it must have been that good that they made me have a fit.

    I don't actually remember it being anything but panicking me because I felt the usual 'aura' of the fit during.

    My current boyfriend became so upset that 'he wasn't getting the opportunity to prove he is good enough to do that' that I allowed him to start, but faked fainting through it so this could be stopped as soon as possible.

    A few months later I had a full blown fit in my workplace and have since found out that I am having approximately 3-6 small fits a day, which last about 30 seconds.

    Our sex life has no passion in it and although I enjoy sex I want it over and done with before it even starts. I know the problem is my problem but my boyfriend is now under pressure to finish quickly, which he finds hard when I don't have any passion and I want it to stop or not do it at all.

    I really need help to get over my fears and revamp the passion back into my sex life, can you help?

    Julie Answers...Julie Says:

    You’re right; it is a complicated situation, but I think the problem is about more than sex.

    I assume you have regular hospital appointments, but have they clearly explained what they now think is the cause of your fits - and discussed your options for management/medication?

    For you to feel confident, it’s vital that you’re fully informed about your health. Make a list of all the questions you have in your mind, and ask them. Take a trusted friend with you for back-up if you want to. It can be useful - even just for remembering all the information you're given. Talk to your GP as well as the specialist. If you’re not satisfied with the answers you get, change doctors - you're quite within your rights. It's really important you see someone you feel you can trust.

    What you went through around 24 was serious - and frightening. I’m not surprised it’s affected your sex life - then and now. It’s possible that you’ve come to associate sex with loss of control, which makes you worry about having a fit - and that fear is bound to interfere with your enjoyment.

    I could be wrong, but it sounds to me like you may never had the opportunity to discuss those experiences properly. In order to get over your fears and move forward, I think you may need a few counselling sessions. If you explain to your GP what you've been through, and how it's affecting your life, they should be able to refer you to someone. You could also contact the National Society for Epilepsy Helpline on 01494 601 400.

    Meanwhile, take the pressure off yourself about sex, and try and explain your feelings to your boyfriend. I know he feels under pressure too, but he’s got to consider the traumas you’ve been through. Remember, if you don't want to be 'on the receiving end' at the moment, you can always explore other ways to satisfy him.

    Thank you for explaining your story so openly and honestly. If you can get plenty of support, at home as well as professionally, I'm sure you'll soon be able to move into a new, happier phase. Really good luck.

    The Greatest Sex Tips in the WorldRefreshingly frank and funny, actress and presenter Julie Peasgood delivers practical information to transform your sex life. The Greatest Sex Tips in the World explores the world of eroticism, revealing secrets and techniques that will energise and enhance your enjoyment.

    Comments (1)

    • Rowan: March 25, 2010 16:13
      The above is indeed a complex situation. There are several possibilities here, the experience when you were 24 would most likely have left you with a certain fear and anxiety with any potential partners.
      I myself have had epilepsy for the last 20 years and there really is a wealth of information out thereon this specific topic, particularly available from support organisations such as:
      http://www.epilepsy.org.uk/ freephone 0808 800 5050
      [RTF]
      Helpline: 0808 800 2200
      http://www.epilepsyscotland.org.uk/information_section/information_publications.htm
      http://www.epilepsysociety.org.uk/Homepage

      One key aspect to feeling you have a little more control over seizures is to identify any specific triggers, for example common ones include stress and anxiety (this may in fact be causing seizures rather than sex or arousal itself), lack of sleep, in women hormones during menstrual cycles, or fear.

      Another thing to be aware of is that many AED's can have an effect on libido, so with changes to medication your sex drive can go through the roof or vanish completely. I find it difficult to voluntarily let go of all control voluntarily because so often it is involuntarily taken away, and it requires a huge measure of trust to allow someone to be intimate in any way with you if your judgement is impaired or there is any confusion.

      If you have not yet discussed this with an epilepsy specialist or neurologist it is imperative that you do so, I assure you they have heard everything before and any good specialist will treat you will a great deal of respect and take you seriously. As an adult sex is an important aspect of these types of relationship and they know this, epilepsy should not hamper your ability to enjoy sex and have a relaxed, passionate affair. Having them speak to your partner and explain everything in depth may help, as understanding usually does.
      Take things slowly and try not to feel pressured by your boyfriend's current impatience. If he wants to prove he is good enough to cause a seizure explain in no uncertain terms that this is not desirable, is frightening and is completely unrelated to skill, as well as killing the mood completely.

      It sounds as though you have several different types of seizure as the 'aura' you mention is in fact a type of simple partial seizure in itself, if they precede larger or more serious seizures for you stop at this point and do something slightly different but relaxing. I do not know what type you mean by 'full blown' but it seems to suggest tonic clonic, regardless of type be persistant with the doctors, it is likely that they can at least give some detailed advice specific to you.
      I'd suggest getting your boyfriend a couple of good sleeves or masturbators as well and trying other things such as sensual massage so that he knows you are not disinterested and his pleasure does matter to you and being completely honest with him. Unfortunately the nature of recurring seizures is that you often don't recognise how out of it you were until it has passed, not can you choose when things will happen. Your man sounds as though he's basically a good guy and wants to please but lacking understanding.
      Counselling may help you recover from the trauma of your previous boyfriend as what he (quite likely unwittingly) engaged in was non-consensual intercourse.
      Try not to worry, relaxe, have good communication and it's worth both doing some research. You could even take some naughty pictures of yourself and give them to him as a gift, then wehn you are not able to be a full participant he still has 'you' to fantasize over. Men who are also sometimes carers need a lot of patience but it is worth it when you find one of them, my husband has had to work with drug changes, impaired judgenebt and at times me bursting into tears when he was close even though I'd been enjoying it.
      Good luck, I hope you find something that works and you're consultant can help.
      xxxx

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