Cauda Equina Syndrome Sexual Dysfunction: An Expert View

A person’s sexuality encompasses a complex interaction of physical and emotional responses, with each influencing the other. Cauda equina syndrome (CES), a potentially disabling condition involving the compression of cauda equina nerves at the base of the spine, can disrupt this balance by causing loss of sensation and impairing sexual function. The degree of dysfunction varies, but CES often leaves individuals with challenges that extend beyond physical symptoms, affecting their emotional wellbeing and their personal relationships.

Discussing sexual issues related to CES is often difficult, yet seeking advice is essential to prevent strains on relationships and enhance quality of life. Here, we present a guide for those who are struggling with cauda equina syndrome sexual dysfunction about what can be done to improve their sexuality, with insights from Michelle Donald, a psychosexual therapist who works with clients with spinal injuries.

What Is Cauda Equina Syndrome?

Cauda equina syndrome is a serious medical condition where the bundle of nerves at the lower end of the spinal cord, known as the cauda equina, becomes compressed. This nerve compression can occur due to a herniated disc, spinal canal narrowing, or any trauma that leads to significant disruption of nerve function. CES is characterised by symptoms such as severe lower back pain, leg pain, numbness and reduced motor control. It can also cause bladder and bowel issues, highlighting the urgency for prompt diagnosis and treatment.

Early recognition of CES is essential; “red flag symptoms” include altered sensation on passing urine, difficulty emptying the bladder, numbness in the pelvic region (known as “saddle anaesthesia”), and changes in lower limb sensation. If left untreated, cauda equina compression can lead to lasting disability, meaning early intervention should be seen as crucial.

To learn more about the basics of cauda equina syndrome, please visit JMW's Cauda Equina Syndrome Hub.

Cauda Equina Syndrome Sexual Dysfunction: Why Does It Happen?

Cauda equina syndrome affects sexual function primarily due to nerve compression affecting the cauda equina. These nerves play a critical role in controlling the pelvic region, including sensory and motor pathways vital for sexual response. When the cauda equina is compressed, individuals may experience reduced sensation, pain, or difficulty achieving and maintaining arousal.

Additionally, nerve damage can impair communication between the brain and sexual organs, resulting in challenges like erectile dysfunction in men or decreased lubrication and sensation in women. The degree of dysfunction varies based on the extent and speed of treatment.

What Are the Most Common Effects of Cauda Equina Syndrome Sexual Dysfunction?

Sexual dysfunction associated with cauda equina syndrome can manifest in a variety of physical and emotional ways:

Physical issues

• Loss of genital, perineal and anal sensation
• Incontinence and continence-related challenges due to the impact on bladder and bowel function
• Neuropathic pain, affecting comfort during sexual activity
• Inability to achieve or sustain an erection (erectile dysfunction)
• Challenges with ejaculation or achieving orgasm

Emotional issues

• Reduced libido and lack of sexual desire
• Frustration due to changes in sexual functioning
• Concerns about body image and self-esteem
• Fear of not being able to satisfy partners, affecting relationships

These multifaceted effects can severely influence a person’s sexual experience, underscoring the importance of understanding and addressing both the physical and emotional aspects of CES.

Why People with Cauda Equina Syndrome Lose Interest in Sex

The emotional toll of cauda equina syndrome extends beyond physical symptoms, significantly affecting sexual desire and confidence. Many individuals face issues such as a diminished libido, frustration, and anxiety over body image, which can stem from changes in physical appearance or mobility.

Michelle highlights this challenge: “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.”

She continues: “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.”

These challenges can create a cycle of avoidance of sexual intercourse and reduced intimacy, making it essential for individuals to seek support early on to address these feelings and rebuild confidence.

Is Sexual Dysfunction Inevitable with Cauda Equina Syndrome?

While sexual dysfunction is often associated with cauda equina syndrome, the likelihood of it happening depends on various factors, notably the timing of medical intervention. Early diagnosis via magnetic resonance imaging and swift treatment are critical in minimising long-term damage to the cauda equina nerves.

When cauda equina syndrome is diagnosed, it should be treated urgently to prevent or recover from problems with sexual function. 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. Interventions often involve surgery to relieve nerve compression and can help preserve nerve function and reduce the risk of permanent issues affecting sexual health, bladder and bowel functions. If symptoms are left to deteriorate, the chances of recovering sensation are much worse and the impact on sexual function may remain for life.

Can Cauda Equina Syndrome Sexual Dysfunction Be Treated?

Treating sexual dysfunction related to cauda equina syndrome requires a multifaceted approach, as adaptation takes time, and solutions are rarely immediate. Successful sexual adjustment depends on several factors, including age at the time of injury, physical health, quality of social support, and gender.

As Michelle explains, it’s essential for individuals to grieve the losses they’ve experienced in order to move forward: “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.”

Adaptation to cauda equina syndrome takes time and there isn’t an overnight solution. Michelle says: “Successful sexual adjustment is influenced by many factors, such as age at the time of injury, quality of social support, physical health, and gender”.

Effective treatments may include medical interventions, pelvic floor exercises, and psychological support. Adjusting expectations and exploring new ways of connecting intimately can also play a significant role in the journey toward recovery and adjustment.

How Talking Can Help

Effective communication is essential to overcoming sexual dysfunction caused by cauda equina syndrome, yet even those in strong, supportive relationships often find discussing sexual issues difficult. For single individuals, the prospect of explaining changes in their sexual functioning to a new partner can be intimidating and complex.

Michelle points out how communication gaps can escalate issues: “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.”

Therapy offers a safe space to express these fears and receive guidance on navigating intimacy concerns. It helps to develop self-acceptance and practical strategies, enabling open conversations and fostering a healthier outlook on sexual experiences.

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. Together with the therapist, they try to reach 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[s] 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.”

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.”

Find Out More

A sincere thank you to Michelle for sharing her expertise and valuable insights into this important topic. For more advice on psychosexual therapy, get in touch with her via email: michelledonaldpst@btinternet.com.

If your cauda equina was misdiagnosed or there was a delay in your diagnosis, you are entitled to make a claim for compensation. JMW’s expert clinical negligence solicitors have helped many individuals secure vital compensation to help them 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. You can also call us on 0345 872 6666, or fill in our online contact form to request a call back.