CES and Sexuality

By Mary KnotT

If you have Cauda Equina Syndrome then the nerves in the lower lumbar and sacral area have been damaged, either by a prolapsed (slipped) disc or other injury. When the nerves which go to the vagina, penis, clitoris and perineum are damaged then sexual function will be affected. If the area between the legs and inside the vagina does not have normal sensation then a woman will not be able to have the sexual pleasure that she may have had before her injury.  However, there may be a gradual degree of improvement in sensation over the first few months following surgery.  Part of the improvement is in getting used to the feelings that are still there and making use of them.  In women the clitoris will still have feeling but it may not be possible to reach orgasm by stimulation as previously.  Men may be able to ejaculate but are not able to have a normal erection. …… ‘ my sex life has to be more planned now and when I come it’s not nearly as intense as before, but still feels good.  I’m just thankful I can feel something’.

For most people with CES this problem will be devastating.  It could lead to relationship problems and loss of confidence, as a normal activity now seems impossible.  It may be that some people give up on it and don’t expect to find a new partner, either male or female, as it seems that rejection would be too hard to cope with.  The incontinence problems, gait disturbance and loss of sexual function may be perceived by those with CES as a huge barrier to a sexual relationship.  It may be that some men and women could not handle these problems in a partner.  ‘It must be strange and a bit awkward for a man to make love to someone who can’t feel what you are doing.  Maybe that would put some men off, I don’t know’.  However, some women with loss of sexual function have described new relationships which they have had……’I hardly feel anything in the sexual area and haven’t been able to get an orgasm….but lately I slept with someone and enjoyed it…because for me sex is not only about getting an orgasm, but the other stuff is very important and fun, too.’  Another woman describes her new partner…..’he is very gentle and loving and wants to help me feel as much as I can…he loves me anyway and doesn’t think it is a problem for us’.  

For men there are different problems….’my wife is kind of afraid of me, I guess…or scared…of what I don’t know…she denies there is a problem.  I do know that my machinery is still operable but just not being put to use’.  Another man says…’my wife does not want to do the things that would help me feel more…..I now need more to be in the head but she will not adapt to that’.  However, it is argued by one guy with CES that ‘sex is more between the ears than between the legs anyway.  For me having a different kind of sex after CES was no big problem’.  

Those of us who have had CES for a while have found ways of coping and are happy to share these ideas for a better sex life: 

  • If you are in a relationship then encourage your partner to experiment with foreplay and different positions.  The skin as a whole is a sexual organ and you will discover that ‘my skin has become more sensitive to touch than it was before and enjoyed more touching than ever’.  ‘It’s about finding what pleases you and where, and centering your attention on that one spot.  It’s also about expanding your horizons.  Not being afraid to experiment and relax.  Opening yourself up to new things and not getting down on yourself if one or more of them don’t work the first time or at all.  It’s about patience.  Patience with yourself and your partner.  Patience with life’.  

  • Before sex, always empty your bladder as a penis inside your vagina will push against your bladder and make you leak urine.  Some women can still orgasm but ‘when I had an orgasm I would pee.  This was very embarrassing and not very sexy to say the least.   My husband has been great in this area in that it didn’t disgust him.  I have learned not to worry about it if it happens.  We just put down a thick towel underneath us’.  

  • Sex is more than just a physical act but is also in the mind, so touch and talk about how you feel.  It is often suggested that sexual aids are used and a vibrator can give a deep vaginal orgasm rather than the clitoral orgasm that you may be used to having previously.  For men this may be a way of satisfying their partner and creating excitement for themselves ‘We bought a few tools on batteries.  These tools are never tired, have a headache or back pain and perform better than the average male’   Although it is something to get used to, my wife thinks that our sex life is really great at the moment’.  You are still able to give pleasure to your partner, even though the feelings are different so don’t withdraw physically.  Some partners are afraid of physically hurting us while making love, so talk about this and be as open as possible about feelings.  

  • There are drugs which may help, such as Viagra, but it doesn’t work for most people with serious nerve damage.  There are also special devices which help a man to have an erection, so ask your doctor about these.

Loss of sexuality is one of the most personal problems that a person can experience.  Like after a death you will go through a grief process but hopefully come out the other side intact.  There is fear that no one will want us, that we are ugly or distasteful.  There are a lot of emotional feelings about sex as well as physical and mental.  ‘I enjoyed making love before CES and thought of sex as a normal, regular activity that was essential to good mental health.  Therefore, having lost sexual sensation I felt that I was not a normal woman and it took many months to regain confidence in myself and know that I am still the old ‘me’.  I still have sensation in my clitoris and so still have desire, but cannot have an orgasm.  What I miss is that few seconds of intense pleasure, but also the feeling of release and relaxation that comes afterwards.  I don’t believe that there is anything that can compensate for that but maybe with time the feeling of frustration will pass’.

‘I believe that a good relationship does not revolve around sex, it’s more the icing on the cake.  Real love can cope with any problem….what I do feel is that one has to keep talking about it with your partner, check if she or he is still happy with the way sex is.  In doing so one can avoid unnecessary problems I think’.

This article on sexuality after Cauda Equina Syndrome was written in conjunction with many people who have lost sexual, bladder, bowel, sensory and locomotor  functions.  We all have different degrees of loss or disability but are able to give practical advice and perspectives on living with these problems.

Mary Knott 

28th November 2000 

CESSG Member