Cauda Equina Syndrome can have a life-changing impact physically and mentally, with sexual function being a common problem for many people. Psychosexual therapist Michelle Donald discusses how CES patients can rediscover their intimate life
“I remember my partner saying to me ‘You looked full of life, you looked fun.’
I said ‘Why me, why someone in a wheelchair, when you could have had anybody?’
‘Because you were confident, because I saw your smile first and not your wheelchair’.
It’s about that acceptance of you first, and that does take some time. You’ve got to find you again, you’ve got to be the autonomous you.
The impact of Cauda Equina Syndrome on a relationship can have different effects. It changes what families perhaps did together before. It can change so much that sometimes that means an ending, but sometimes it can be a renegotiation.
Often the intimate life comes last because people go home, try and make things as normal as they can, try and get all the adaptions done if they need adaptions, they’ll try so hard to get the family back to some sort of normality that the last thing they think about is their intimate life.
It’s the fear that everything is going OK, or as OK as it can, within the relationship, the last thing they want to do is upset it. And because sex is emotional and hits emotional buttons, we don’t open up about it.
After CES, many people will experience sensation loss, loss of orgasm and loss of ejaculation. This will affect most people on an emotional level as well as physical level.
It’s really important to know your unique self, everyone is different. Do some of your self-focus exercises, speak to consultant or GP about your medications.
The pain medication we take for hypersensitivity can often have an effect on lubrication and erectility. I would never advise anyone to come off their medication, but what I am saying is be aware that your medication will have an impact on you sexual drive and your sexual feelings and sensation.
People want to know about their fertility; often for women doesn’t change but for men often there is difficulty to ejaculate. If that is the case there are different things that can be used, sometimes that works, but if not there is the medical route.
Expectations of sexuality after CES can be quite low – it can be amazing, but you have to go through a process.
We are so fearful that we don’t try, but if we don’t try new things, we will be upset. Sex will never be the same as it was before – but believe me, as you make your journey, you will find out how amazing it can be again.”
* Michelle was speaking at the CES Festival and Conference, the first-ever five-day event to raise awareness of CES and its impact, bringing together patients and healthcare professionals via a virtual forum. To register for tomorrow, which is also International CES Awareness Day, visit here
