MS researchers are putting sex on the agenda
Ashley’s interest in sexual health goes back a long way. “I actually first became interested in sex education at school” she explains. “I grew up in a very conservative part of the US. My parents told me about sex but no one around me had any clue. I used to get into trouble for filling my friends in!”
Causes of sexual difficulties in MS
Ashley is keen to work in MS research because, she says, “it seems to be the long-term health condition with the biggest impact on sex. Research shows many people with (and without!) MS experience sexual difficulties at some point”.
These difficulties range from erectile dysfunction and reduced sex drive to loss of sensation and numbness.
Sometimes they are a direct result of changes in the brain. Sometimes other MS symptoms like pain and fatigue can indirectly cause sexual difficulties. And sexual difficulties can also be related to issues like negative body image that people with MS often experience.
“There’s nothing else with that much going on” says Ashley, and yet “sexual difficulties get pushed to the bottom of the list of MS symptoms. There are few treatments available and people just put up with it. They think it’s normal to lose their sex drive.”
One of our older participants told us she feels like healthcare professionals aren’t really interested in sexual difficulties because they think older people with MS have other things to worry about. Ashley Brown
Putting sex on the agendaAshley and her colleagues have been working with people with all types and stages of MS to prepare for their new research project. “We’ve teamed up with lots of people with MS to understand what would be helpful to them” she says.
"One of our older participants told us she feels like healthcare professionals aren’t really interested in sexual difficulties because they think older people with MS have other things to worry about.”
Ashley hopes their work will help change that. “The chances are you won’t get asked about sexual difficulties by your doctor, especially if you’re single. But we’re working with two nurses from the MS Trust who give training to other MS health professionals”.
Talking about sex and MS
Their proposed intervention will involve 6-8 hours with a specially-trained MS healthcare professional, like their MS nurse. Participants will learn how to communicate better about sex and work around difficulties. It would be the first targeted therapy for people with MS experiencing sex difficulties.
Ashley is a big supporter of talking about sex difficulties. “I can talk about sex all day now” she laughs. She works with lots of different communities, including people who identify as transgender and non-binary, and people with specific sexual interests. In her experience, sexual health is often better when people are less afraid to talk about sex.
That’s her top piece of advice for anyone experiencing sexual difficulties. “Just talk about it” she urges. “The hardest thing is to say it out loud, to a doctor, nurse, even your partner. It sounds simple but we all get embarrassed.”
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