The changes that come with a spinal cord injury can be difficult and frustrating to deal with. You might feel alone and isolated in what you’re experiencing, as well as restricted by your new capabilities. It’s not surprising then that thinking about sex again is something that many spinal cord injury patients find difficult; or perhaps even something they feel is no longer a possibility.
While changes differ between different people with different injury levels, having sex with a loved partner is something at the core of meaningful human relationships, and there’s no reason why you still can’t enjoy and feel fulfilled by them just because you’re in a wheelchair. We spoke to Ginette, an SCI patient who uses an intermittent catheter and is living with cauda equina at L5S1, and transverse myelitis C1C7, about her experience rediscovering sex after her injury.
Starting to think about sex again
For Ginette, just thinking about sex was something that happened a good two years after her first diagnosis. “Because I was catheterising,” she said, “I felt different, which then made me think, would my husband see me differently? And that was quite a big thing to get over for me”. Having trouble accepting her new catheterisation routine was an alienating experience; and something that held her back from opening up to others.
“It was me that wasn’t accepting the catheterising, whereas everyone else had kind of accepted [that] that’s a thing that I do. But they weren’t the ones physically having to do it or see it, they were just, “Oh well, it’s just like taking a tablet””, she said. It wasn’t until she said to her husband: “Look this is making me feel really different, and really unattractive to be honest”, that he proposed a solution:“Let me watch you catheterise, then”, he said. That was when Ginette felt he could relate to how she was feeling.
When made to feel isolated by her catheterisation routine, Ginette simply reminds herself: “You are making a bigger deal of this than you need to. Actually all you are going is what everybody in the world does, which is wee, but the only thing is I’m weeing through a tube...And then you start thinking, well why should I talk about it? We don’t all talk as humans about weeing. And I’m just weeing, just through a different method”.
Being open about and sharing your experiences — your fears, worries, wants — is a way to reconnect with those that love you and remember that actually, you’re still a normal person. It’s an essential first step in even considering the possibility of having sex again after your injury.
Education is key
Opening up however is often easier said than done. Ginette’s husband was not involved in the process when she was taught to selfcatheterise,
but she feels that having him there would have helped her be able to open up and think about sex sooner. “I think if we’d have both done it
[learned how to catheterise] together it wouldn’t have been such a secretive thing,” she says, “There is a complete lack of knowledge out there...it becomes a very, very secretive subject.”
During her rehabilitation process, Ginette was never spoken to once about the possibility she could have sex again, or any risk or health complications that might bring on. She then turned to her own research for answers, finding help in a Facebook group with others living with cauda equina. After posting her question on there, she began to receive answers from others that had been in the same situation. In practice, she found, research and communication are key when actually learning how to have sex again with mind to your new capabilities: especially where it comes to being physical.
Overcoming physical barriers
“It’s all different positions,” Ginette explains. “You don’t want to be held up by your husband because you can’t support yourself. You can’t hold your own weight, so it was like, well we need to do a bit of research”. Sex after SCI, like everything else, needs to be changed to accommodate new needs, which can take away some of the spontaneity often associated with sex and sexual excitement. The most important thing in when rediscovering sex, says Ginette, is making sure the process isn’t turned into a chore. Learning more about possibilities and options helped Ginette to feel again that sex is something natural and normal.
Be honest with your partner: if you can’t feel anything, tell them. Sex is more about emotion and intimacy between two people than it is about physicality. It may not be like it was before your injury, but it is still something the two of you share that can be defined however you please. Ginette has no sensation from her belly button down to her knees, which means she has no sensation when having sex. However, she says, “It’s still intimate time together and I still think that’s really important...it’s what normal people do”.
What should I do with my catheter?
Intermittent catheter users are typically told they will need to catheterise every four hours, or 4-6 times a day. Ginette is told she needs to catheterise every 3 hours, but she treats this as more of a
guideline, particularly where it comes to sexual activity. “That’s where I didn’t want it to become so militarised,” she says. “If my husband says, “Do you fancy going to bed for a bit?” It’s not as if I say, “Oh no, I’ve got to catheterise in half an hour!”
“I do try and stick to [the guidelines], but when it [the possibility of sexual activity] crops up I don’t want to completely kill the situation!” Just like anyone’s toilet routine, urinating with a catheter is just something that slots into your day and forms part of your regular routine.
Some healthcare professionals, as well as many intermittent catheter users will recommend catheterising prior to having sex, to prevent any accidents happening. The bladder and sexual reflexes are very close together, so sometimes during sexual activity the bladder reflex can also be triggered. However, Ginette has never experienced any accidents of this sort.
Just like with any kind of sexual activity — catheter, SCI, or otherwise — cleanliness and hygiene is incredibly important in preventing infection. If you are catheterising before sex, ensure you have washed your hands well with soap and water, and that your urinary opening is also clean.
Is there someone I can speak to for more information?
There are plenty of support and resources available for SCI patients who would like advice and guidance on how they can again resume sexual activities. Contact one of our Bard nurses or advisors with your questions, or search through our site for any other information that might help. It is also a good idea to approach your therapists, doctors, or specialists on the topic: their job is to help you lead as happy and healthy a life as possible, and will share their expertise with you when
you ask them.
If you need any more information relating to sex and SCI, then just head to our Learn section. Or get in touch for a chat with one of our expert Bard nurses.