How Cauda Equina Syndrome Affects Relationships

A person’s sexuality is made up of physical and emotional responses existing together and having an impact on one another.

Cauda equina syndrome can cause loss of feeling, sensation and sexual function, with the symptoms varying from person to person.

Sex has always been an uncomfortable topic to approach, especially when it comes to seeking help and advice, and not getting help can lead to problems with personal relationships.

We spoke to sexual therapist Michelle Donald, a pschosexual therapist who works with clients with spinal injuries, to give those who may be struggling an understanding of what can be done to improve your sexuality and remove the stigma around discussing such issues.

Sexual Issues Caused by Cauda Equina Syndrome

Physical

  • Loss of genital, perineal and anal sensations
  • Continence issues
  • Neuropathic pain
  • Inability to achieve and/or sustain an erection
  • Inability to ejaculate
  • Failure to reach an orgasm

Emotional

  • Loss of libido and desire
  • Frustration
  • Worrying about body image
  • Inability to please partners

“I have erectile problems and also struggle to sleep with foot and leg cramps, etc. We have gone from a loving, sexually active relationship to now having separate beds and separate rooms. There is no sex life between us, although we both accept this, as both of our sex drives have diminished to be virtually non-existent.” - Peter

Why Do People Lose Interest in Sex?

Michelle said: “Often clients come to me a long time after the initial diagnosis, by which time unhelpful patterns have been established and have already affected their behaviour.

“Many prescribed medications cause fatigue and reduce desire. This affects how people feel about initiating sex. Problems with weight gain often cause clients to have issues with their body image, especially if their pattern of walking has altered or they are using a wheelchair.

How Talking Can Help

Many people in loving relationships with good levels of communications can struggle with sexual communication. Single people feel daunted at the thought of having to explain to a new partner how their body now works.

Michelle said: “I hear about how physical closeness and hugs lessen due to fears about it leading to sex. A client recently told me that when sexual activity takes place, she experiences distracting thoughts, particularly about her lack of response, worry about her appearance, and consequently about her partner leaving her.

“I had no idea I needed to talk as much as I did. I wasn’t connected to my deeper feelings and had not recognised the need to talk with someone I can trust and respect.” - Anonymous

What is Psychosexual Therapy?

Psychology is the science of the human mind and behaviour, meaning psychosexual therapy is an application that looks specifically at human sexuality.

Therapy begins with an initial conversation with an individual or couple about their sexuality-related difficulties and, together with the therapist, a shared understanding of what factors have contributed to the development and maintenance of the sexual difficulties. 

This will highlight areas to focus on, as well as exercises for the person(s) to do at home.

Michelle said: “Following a consultation, a tailored behavioural programme is formulated, giving clients tasks to do at home. Initially, penetrative sex is not included and the couple is asked to carry out a gentle touching exercise. The focus here is on sensuality and the purpose of a sex and genital touching ban is that this reduces performance pressures and allow the couple to just be together without thinking about ‘what next.”

How Psychosexual Therapy Helps

Michelle said: “Couples often find that as a result of working together and making time for the exercises, their sense of intimacy increases because they are both prioritising the relationship in a way that they might not have done for a long time.

“Inevitably, the behavioural programme will stir up emotions; some couples find the exercises surprisingly moving and are shocked by the intensity of feeling that they stir up, while others might struggle with the exercises. Whatever emotions occur as a result of the programme can be thought about within therapy.

Typically, when there are sexual problems people often resort to avoiding any physical intimacy and avoid talking about sex altogether. For many people, just sitting and thinking about the physical relationship alongside a therapist can release much of this built-up pressure. 

“Couples and individuals who are experiencing sexual difficulties can feel isolated because sex can also be a taboo topic between families and friends. It can be very enabling to share their story.”

“Don’t be afraid to touch yourself. How can you tell someone else where to touch you if you don’t know yourself?” - Anonymous

Treatment for Sexual Problems

Cauda equina syndrome should be diagnosed promptly and treated urgently to prevent or recover from problems of sexual functioning. Early signs of the condition include pain or weakness in the legs and changes when urinating, such as reduced flow, difficulty emptying the bladder or loss of sensation.
 
It is at this stage that undergoing surgery improves the chances of full sensory recovery. If symptoms are left to deteriorate, the chances of recovering sensation are much worse and the impact on sexual function may remain for life.
 
If your cauda equina was misdiagnosed or there was a delay in your diagnosis, you are entitled to make a claim for compensation. Our expert clinical negligence solicitors have helped many individuals secure vital compensation to help them to cope with debilitating injuries caused by mistakes made by doctors and nurses. For more information on making a claim, visit our Cauda Equina Syndrome Compensation Claims page.
 
Adaptation to cauda equina syndrome takes time and there isn’t an overnight solution, Michelle says that “successful sexual adjustment is influenced by many factors, such as age at the time of injury, quality of social support, physical health, and gender”.
 
She added: “Losses need to be mourned so that the remaining strengths can be nurtured and developed. To achieve satisfying sexual adjustment, a person with cauda equina syndrome will have to learn to adapt sexual behaviour to suit their current situation, rather than trying to do what they did before.”
 
For more advice on psychosexual therapy, get in touch with Michelle Donald via email: michelledonaldpst@btinternet.com.

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