When I was asked to take part in the first in a series of webinars for Stoke Mandeville Spinal Research (SMSR), I didn’t hesitate to say yes. SMSR, a national charity funding research to improve quality of life for people with spinal cord injury (SCI), was keen to open up conversations about the subjects that really matter to people living with SCI, and what better subject to start with than sex and relationships (that’ll get their interest!)

Why does this topic matter?

Whilst it can feel awkward to talk about, sex and intimacy matters, it’s important for SCI people to know that a healthy and fulfilling sex life is still possible after injury, and it’s important that clinicians, carers, partners and family members understand that intimacy can be an integral part of someone’s wellbeing, and that conversations about it should not be ‘taboo’.

That said, agreeing to talk about something in principle is very different from sitting in front of a laptop watching more and more people enter the webinar’s waiting room, the dawning realisation of having to relay some of my most intimate moments to 90 strangers was rather more terrifying than I’d imagined! But I also knew that if my experience could help even one person feel reassured, or encourage one professional to start a conversation they might otherwise avoid, it would be worth it.

Rehabilitation focuses on practical independence

I was 19 when I sustained my spinal cord injury in 1998. Being at the start of adulthood, I had a healthy interest in intimate relationships. Yet during nearly nine months in a specialist spinal injuries rehabilitation centre, sex, intimacy and even fertility were never discussed with me by a healthcare professional. Rehabilitation focused on practical independence such as using a wheelchair, getting dressed and managing my bladder, which are of course important.

After discharge from hospital, an early intimate experience led to an embarrassing bladder accident. It left me worried that sex might never be the care-free, fun experience I had expected it to be before my injury. Psychologically, it was a really difficult thing to deal with and it was in danger of driving me into a downward spiral. But sometime later, when I entered a stable and loving relationship built on trust and chemistry, a fun and fulfilling sex life developed. Whilst the relationship didn’t last, the realisation that sex and intimacy could be an enjoyable, integral part of a relationship did. Something that has continued to be true in subsequent relationships.

How does SCI affect sex and intimacy?

SCI can affect sex and intimacy in many different ways. Reduced sensation can create a feeling of disconnection from parts of the body below the level of injury, especially the erogenous zone. Limited movement and lacking the ability to position yourself can make the practical side of intimacy more difficult.

Worries about bladder or bowel accidents can be hard to put out of your mind. A lack of spontaneity can feel frustrating, and needing support from carers to get ready can change the dynamic. A lack of body confidence and issues around self-image can affect a person’s willingness to engage in intimacy, whilst for some men, erectile dysfunction is a common consequence of SCI, for females with SCI they can find they have lack of sexual sensation and function.

I’m painting a bit of a bleak picture here I know, but just because sex and intimacy is ‘different’, it does not mean unsatisfactory. For many people, the key is allowing intimacy to change rather than trying to recreate exactly what came before or what you think it should be. Some areas of the body may feel different, while other areas may become more sensitive. Whilst positioning can be challenging, it can also be fun to experiment with what works and there are numerous products on the market to help make this easier.

A reliable bladder and bowel routine can reduce anxiety and make it easier to relax. Medical support is also available for issues such as erectile dysfunction, with options ranging from medication to injections and other treatments. But it is worth remembering that intimacy in a healthy relationship is not defined by one physical function. Feeling close, communicating openly and feeling wanted can all be deeply fulfilling.

There is no rush

My advice to anyone navigating sex and intimacy after SCI is to be kind to yourself and give it time. There can be a lot to adjust to physically and emotionally, and it is completely understandable if confidence does not come back straight away. Try not to put pressure on yourself to return to the kind of sex or intimacy you had before, or to meet an idea of what sex “should” look like. Instead, give yourself permission to explore what feels comfortable, enjoyable and meaningful to you now.

Don't feel afraid to speak openly

Open communication can make a real difference. If you have a partner, talk honestly about your hopes, worries, likes and dislikes, even if it feels awkward at first. You do not have to have all the answers before you start the conversation. Sometimes simply saying, “I’m nervous about this” or “I’m worried my body might react differently” can take some of the pressure away and help your partner understand what you need. Being part of the SCI community, we quickly learn to become open in conversation with each other and discuss topics that before might have felt awkward or embarrassing (even Jilly Cooper would blush!).

If something does not work, try not to see it as failure. See it as information that helps you understand your body and what works for you, particularly when things feel a bit clumsy or unpredictable. Sex after SCI may involve trial and error, but that does not make it any less valid or fulfilling.

Seek professional support

Professional support can also be important. If you are struggling with erectile dysfunction, changes in sensation, pain, spasms, fertility concerns, bladder or bowel anxiety, or the emotional impact of intimacy after SCI, it is worth speaking to a clinician, specialist nurse, GP, counsellor or psychosexual therapist. These are valid healthcare issues, not embarrassing side topics. If a professional does not raise the subject, you are allowed to raise it yourself and ask for the support you need.

Most importantly, remember that sex and intimacy is never just about the birds and the bees, it’s a complex set of physical factors and emotions. It can include closeness, affection, trust, touch, humour, conversation, attraction and feeling wanted. Like many areas of life after spinal cord injury, sex and intimacy can be challenging, emotional and frustrating at times. But with patience, openness and the right support, it can also be passionate, joyful and deeply connected.

Support available

If you are looking for support, or know someone who is, the following organisations may be able to help:

Cauda Equina Champions Charity offer psychosexual therapy to help people affected by cauda equina syndrome reconnect with their partner and work towards regaining sexual fulfilment.

Spinal Injuries Association offer a counselling service where all therapists have lived experience of SCI. Whilst not specific to sex and intimacy, the fully qualified counsellors can offer support with any aspect of living with SCI.

You can find out more about SMSR’s webinar on Sex & Relationships, by watching their recording.