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How Cauda Equina Syndrome can Affect A Person’s Physical & Psychosexual Self

Michelle Donald

An introduction -“ I met Michelle as a client several years ago. I had been struggling in my relationship for eighteen months before I looked for help.

I  married my partner at that time with whom I had enjoyed a ‘ normal ‘ relationship  before my cauda equina injury. As a consequence of my sexual dysfunction I had  retreated from the physical side of our relationship. It had become too painful to deal with I embarked upon a rocky road of denial about what had happened to me.

Cauda Equina Syndrome had robbed me of my identity and my confidence and I was struggling to cope.

With hindsight, I probably left it too long. The damage had already been done, leading to a separation and subsequent divorce from my  husband.

I know I am not alone in the way I felt and many other people are experiencing the same problems in their own relationships now.

Personally, I believe there should be access to dedicated services available to people after a cauda equina injury to help them adjust to and cope with the new sense of self. This is something CESA  are very passionate about delivering. We hope to be working closely with Michelle in the future to support people living with CES. She has given her time to come along to our support group meetings across the country and has helped some of our members. Thank you Michelle for everything you do to support our community in your unique and inspiring way.”

~ Claire

How Cauda Equina Syndrome can affect a person’s physical and psychosexual self

Michelle Donald PG Dip.PST (COSRT Accredited)

Spinal Injuries Specialist

michelledonaldpst@btinternet.com

I see many clients affected by Cauda Equina Syndrome whose sexual problems are not obvious to their clinicians and these issues are often never raised in the consultation. Both clinicians and patients feel uncomfortable talking about sex. The consequences of this failing can be severe and lead to personal relationship and marriage problems simply because people do not know how or where to seek appropriate advice.

A person’s sexuality is a complex interplay of physical and emotional responses that affects the way they think and feel about themselves. Cauda Equina Syndrome can cause loss of feeling, sensation, and sexual function. The symptoms will be different for each person which adds to the difficulty in talking to others with similar issues.

The physical sexual issues, which are experienced by clients with Cauda Equina Syndrome, can include the loss of genital, perennial, and anal sensations, leaving them reporting to me initially that they rarely enjoy sexual contact. Emotional distress is common, as sex is not how it once was often leading to loss of desire, frustration, and worry about body image together with issues around continence accidents and pleasing partners.

I regularly hear “nothing is there” “It’s numb”, “it stings” “it’s uncomfortable”.

Some client quotes: –

““Don’t be afraid to touch yourself. How can you tell someone else where to touch you if you don’t know yourself?” (Female aged 59, Inc CES)

“I just thought, I am ugly and my body is different, I don’t like it and I don’t want to show it to anybody else” (Female aged 37, CES)

Often clients come to me a long time after initial diagnosis, by which time unhelpful patterns have been established and are already affecting their behaviour. Loss of feeling leads to a loss of the enjoyment of intimacy.

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

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

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 anxiety about her partner leaving her.

What is and how does Psychosexual Therapy help.

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 are 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 pressure and allows the couple to just be together without thinking about ‘what next’.

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 the 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.

What people say about therapy.

“We have come to accept that things are different than before my accident but we value the journey as much as the destination! A few tears but many laughs with the homework you set us has left us in awe of your compassion and expertise”. (H,Cpl, 50’s, Female CES).

‘’You have allowed us to be as well equipped as possible to confront the journey that lies ahead.’’ (H,Cpl, 30’s Male CES)

‘’Thank you. 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. So thank you very much for your time, effort, flexibility, patience and wisdom.‘’(Sgl Bi,Female 34).

CONCLUSION Adaptation to CES is a gradual process that takes time. Successful sexual adjustment is influenced by many factors such as age at time of injury, quality of social support, physical health, and gender. 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 do what they did before.

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