Cauda Equina - Advice for sufferers

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Sexual Problems

Much of this section was written in collaboration with a CES patient support group. Remember that each person has different degrees of injury.

The sexual dysfunction that follows CES injury can be one of the most distressing aspects of the condition and it is a difficult topic to discuss, even with a long-term partner. Doctors and nurses may not think that this is an important part of CES, may be unaware that it is a relevant issue or avoid raising this subject in clinics to prevent embarrassment. As a result, patients feel alone and very much at sea. Sexual dysfunction is part of everyday life with CES because the nerves that carry reflexes and sensation (feeling) to and from the genital regions originate in the lower lumbar and/or sacral area are damaged.

In women with CES, the clitoris, perineum (the area between the legs, or 'crotch') and vagina are numb or have abnormal sensation. The physical sensation (feeling) that may have been present before the injury is gone but they may have the desire for sexual activity and even experience the same feelings of arousal as before. However, there is generally a complete block in achieving orgasm. Some women may never have achieved an orgasm before their injury but for those who have, it is very upsetting "getting to the brink of orgasm and finding that nothing happens". Men are unable to have a normal erection and are often unable to ejaculate.

There may be a gradual improvement in sensation over the first few months after the onset of CES. Part of this 'improvement' is partly real but also involves getting used to the sensation (feeling) that is present in the genital region.

For most people with CES, coming to terms with their sexual problems in the aftermath of their injury is daunting. The loss of sexual function is a very personal problem and many patients go through a process similar to grief. There are a lot of emotional, physical and mental feelings about sex that a person with CES will try to resolve... "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 are those few seconds of intense pleasure and also the feelings of release and the relaxation that comes afterwards. I don't believe that there is anything that can compensate for that, but maybe with time the feelings of frustration will pass".

Many fear that they will lose their sex life and even their partner as a result of the injury. Those without a partner suffer from loss of confidence, as any prospect of having a normal sex life seems impossible after cauda equina damage. Some people fear rejection or do not expect to find a new partner, and give up their social life. Those with CES may perceive incontinence and gait disturbance additional barriers to the formation of a relationship... "There is the fear that no one will want us, that we are ugly or distasteful".

General advice

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:

  • Sex is more than just a physical act but is also in the mind, so touch and talk about how you feel.
  • Explore your genital regions so that you know what is numb and what has sensation. Stimulating your clitoris or penis may help to increase sensation.
  • If you are in a relationship then encourage your partner to experiment with foreplay. Get your partner to stimulate any other areas from which you can get sexual feelings or that arouse you. These sensations can contribute to your sexual experience... "My skin has become more sensitive to touch than it was before CES, and I enjoy touching more than ever".
  • Remember that in the months and even years following CES, your sexual sensation will probably change in some way and you will react differently. Work positively to maximise these changes.
  • 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. Talk to your partner about sexual positions, as you may feel more satisfaction in one position than another – further information can be found in books such as 'Joy of Sex' or 'Our Bodies, Ourselves'.
  • Try to talk to your partner about your bladder and bowel problems and how they might affect sex. If you can empty your bladder and bowels before going to bed this will increase your confidence. If you have rectal leakage, try using an anal plug (see sections on bladder and bowel problems above).
  • Medicines, injections and vacuum devices for male erection problems may help in some cases – ask a doctor with a special interest in this field (eg a urologist or andrologist).
  • A vibrator can give a 'deep vaginal' orgasm, rather than a 'clitoral' orgasm. Other sex toys stimulate sensation and, whilst aphrodisiacs may not work, they can be fun!
  • Remember that your partner may be just as upset as you, particularly if they feel unable to satisfy you.
  • Don't give up, sex can be enjoyable and fulfilling, even if you do shed a few emotional tears when it does not seem to work.

Fertility Issues

Many patients with CES are concerned about their future prospects for starting or completing a family. Men should ask to be referred to a urologist or andrologist for advice. Women should discuss the issue of childbirth with their obstetrician or gynaecologist, preferably prior to conceiving.

Quotes from women with CES

"My sex life has to be more planned now and when I come it's not nearly as intense as before, but it still feels good. I'm just thankful I can feel something."

"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."

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."

"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."

"He (a new partner) 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."

"It's about finding what and where pleases you, and centring 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."

Quotes from men with CES

"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."

"My wife does not want to do the things that would help me feel more...I now need more to be in the imagination but she will not adapt to that."

"We bought a few vibrators. 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."

"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."

Page Last Updated: 10 June 2004

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