Let’s talk about sex

Fri 19 April 2024


More than 30 years after hip hop trio Salt-n-Pepa encouraged us to speak openly about sex, many people still view it as a taboo topic. And when MS affects a person’s sex life, they can be too embarrassed to talk about it or seek support.

When you’re told you have MS, no one mentions sexual dysfunction. I was diagnosed with relapsing remitting MS in my 30s after experiencing numbness, difficulty walking and slurred speech, among other symptoms.

Everyone’s MS is different and there are lots of symptoms you can potentially experience but I didn’t know it could affect sex. No health professional has ever told me that MS can cause problems relating to sex. Nobody.

The ‘normal’ MS symptoms, like fatigue and pain, can restrict you from having sex in the first place. Mobility is an issue too – you can’t do acrobatics anymore! But there are more specific things on top of that.

Read about sexual problems affecting women

The physical issues affecting sex

An inability to orgasm is quite a common issue. But there’s also, feeling like you’re going to orgasm but you never do. And that’s not even just when you’re having sex. It can be when you’re walking down the street. It’s a tingling sensation and it’s unpleasant.

I know it doesn’t sound unpleasant, but it is! It can last for a short time or for hours. It actually becomes painful and can’t be relieved in the usual way. You just have to put up with it or find a distraction.

Then there’s the numbness. Sometimes I can’t feel an awful lot during sex and when I’m having an MS flare-up, I can’t feel anything at all. And sometimes it’s a weird sensation. You know when you touch something when you’re wearing rubber gloves, and you can feel the thing but it doesn’t feel like what it is? It’s like that.

You can also experience loss of libido, but then you can go from that to “oh my god, I need it now!”

Learning to talk

I don’t get embarrassed easily and I have a very supportive husband. We’ve been able to talk about this and it hasn’t affected our relationship. Not everyone is so lucky.

Read about sex and relationship problems

That’s the thing, sexual issues are not really discussed in Britain. It’s not a done thing. I know some people my age and older who talk openly about sex but most don’t.

People should be talking about it more. Why is it ok to talk about an ingrowing toenail but it’s not ok to talk about sex?

I did mention my sexual issues to one health professional shortly after I was diagnosed. They sort of shrugged and didn’t seem to know anything about it. And that was that.

So I stopped talking to health professionals about most things. I’ve only really started talking more again recently now I’ve got a really good MS nurse. If they’d said to me, “actually, that’s really common with MS.” Just hearing those words would have helped.

It’s more common than we think

I didn’t start to think it could be my MS causing these problems until I asked about it in my MS Society local group.

I started talking with one female friend, then another chimed in. Then some of the blokes started saying they were experiencing sexual problems too, but they felt they couldn’t talk to anyone about it.

Read about sexual problems affecting men

I’ve since spoken to others who are having the same experiences. People are just so relieved when they find out it isn’t just them, that it’s normal and quite common.

And actually their partners often feel relief too, because they know there isn’t a problem with the relationship. Talking to others, it’s reassuring. You kind of feel like, phew, I’m not a freak!

And my MS friends and I give each other advice about how we manage different symptoms.

Removing the stigma

I want doctors to ask about sexual dysfunction when you go in to speak about your MS. Bring the topic up, ask the questions. There are ways they can word it so it’s appropriate.

I’ve spoken to student doctors about MS and I said to them – sometimes it’s too embarrassing for patients to bring up the topic of sexual dysfunction themselves. And they were so receptive to that. That’s what might need to happen to break the stigma or the taboo.

It might make people with MS think well actually, yes, I am having those problems. And I think whenever you’re given information about MS, sexual dysfunction should be included.

If someone reading this is living with sexual dysfunction or another symptom they’re embarrassed about my advice would be to talk to someone. Chances are, whatever you’re experiencing, most of your MS friends have also experienced it in some form.