Multiple sclerosis and sexual dysfunction – how to combat symptoms of MS that impact your sex life
Diagnosed at sixteen, Multiple Sclerosis has always been an unwelcome third party in my sex life, and because MS came before I was sexually active, it took a while to work out exactly how it impacts intimacy. Was I - at the ripe old age of eighteen - getting the quite literally mind-blowing sex that I’d read about in magazines, or was full-body postcoital tingling just another symptom of neurological illness?
I remember asking my nurse exactly that; querying whether post-orgasm spasms, internal tremors, and numbness were “normal” or a symptom of MS, and I was met with an awkward shrug and quick shift of subject. Disability and sex is taboo, and the impact of MS on sexual function is unimportant: that was the lesson I learned.
But of course, this couldn’t be further from the truth.
Good sex is a vital part of our overall wellbeing, whether alone or with (an)other(s) - this is no less important when you have MS. Finding ways to navigate neurological symptoms and disability can even provide a new pleasure as it introduces a level of physical and emotional intimacy unique to the needs of a disabled body, and the partner (or partners) who helps to meet them.
So what is Multiple Sclerosis?
Multiple sclerosis, or MS, is a lifelong, progressive condition that causes damage in the brain and spinal cord. The Myelin (the protective coating around our nerves) is attacked by the body’s own immune system. Because this damage can happen anywhere in the brain and spinal cord, and to varying degrees, symptoms are wide-ranging and vary between each person with MS. Common symptoms include; vision problems, pain, decreased sensation, fatigue, weakness, stiffness, problems with memory and thinking, mobility issues, and bladder and bowel impairment. All of these symptoms can have a secondary impact on the sex life of someone with MS, but multiple sclerosis can also impact sexual function directly thanks to the nerve damage itself interfering with signals to and from genitalia.
How MS impacts sexual wellness and specific symptoms you may experience
My experience of how multiple sclerosis impacts my sex life started relatively incrementally. It wasn’t something I needed to talk about with sexual partners and not all were aware I even had MS, but as with anything in Multiple Sclerosis, things change.
Over recent years, MS has had a much greater impact on my sexual wellness; decreased sensation and libido alongside increased fatigue have made a continued sex life with my husband something we must consciously (and patiently) prioritise.
Other symptoms of sexual dysfunction may include vaginal dryness, difficulty orgasming, and erectile dysfunction. Mobility issues can change how you physically participate in sex, and the psychological impact of living in a changing body also lessens desire: becoming disabled can obliterate your self-esteem and how you view yourself as a sexual being.
But there are ways to manage all of these and work towards a fulfilling sex life.
Solutions to navigate sexual dysfunction with MS
Communication has been the most important factor in navigating the progression of my illness, and the new and increasing ways it impacts how I have sex.
Honesty is vital; it’s terrifying talking about changing needs, but sex is an innately vulnerable act and it can be liberating – even empowering – leaning into your vulnerability. As I mentioned earlier, such communication can even help foster increased intimacy that leads to a much more rewarding connection.
When my libido began to decrease there was a period in our relationship when my partner thought maybe the problem was him, and this created some friction between us leading to even less desire for sex. Patience, honesty, openness, discussion – these all matter. I cannot overstate the role of communication when it comes to sex and MS (even if it’s only a case of being honest with yourself!)
And once the dialogue is flowing, the practical solutions can follow.
Reduced libido and fatigue with MS
I’m starting with the trickiest symptoms to overcome (at least in my experience). Libido and neurological illness is a funny thing because the psychological and emotional desire for sex is still there, it’s just that the message isn’t getting through to anywhere else. It’s almost like I need to make the conscious decision to have sex and then manually switch myself on. A necessity for this additional step is a patient sexual partner, but I like to think of it as simply foreplay to the foreplay. A pre-warmup warmup. “Quickies” don’t really feature much anymore, but (fatigue-willing) when lightning strikes it’s all the more exquisite for its rarity.
Decreased sensation (and difficulty orgasming)
Two words: sex toys. Vibrators and clitoris suckers: because sometimes a machine with a long-lasting battery is the only thing that has the endurance and stamina required. Seriously though, there are many benefits to using sex toys. The variety means you can try different types, or settings, or speeds, or intensities, until finding something that works for you. They’re powerful enough to make a substantial difference to impaired feeling, and they can be used independently or with a partner. Most importantly they’re fun! Something that can be forgotten when sex starts to feel a bit medicalised: sex needs to be fun.
Something I’ve also recently purchased for myself is orgasm gel. Admittedly I didn’t know this existed and was thrilled to discover it. I’m hopeful that this will help to intensify sensation, and I’ve also been reading about finding other erogenous areas of the body to help foster sexual intimacy if you have a complete loss of genital sensation.
Mobility issues
As my body weakens so too does my ability to hold various positions (let alone actively participate). Positioning pillows are a good way to hold fatigable legs, or provide core support. Being helped into positions – consensually and with that all-important communication – also, once again, brings additional intimacy.
Changes to sensation in other parts of the body
MS can change how it feels to be touched anywhere on the body, which can cause unpleasant jolts and spasms that nobody wants to experience during sex. Talking with your partner in advance about areas of your body that should be avoided – assuming they can remember in the heat of the moment – is a good place to start. Remaining partially clothed or covering ‘tricky spots’ to dampen sensation might also help.
MS can also cause the reduction of sensation as body parts lose feeling, or can get chronic ‘pins and needles’, this can be a difficult symptom to work around, but with open honesty and switching positions, toys and erogenous zone stimulation can all be a great way to enjoy intimacy with your partner(s) and remember, orgasm isn’t always the ultimate goal of sex. Pleasure, connection, and intimacy can all be achieved through exploration and appreciation of each other’s bodies.
Self-esteem and a changing body
Stay curious, don’t shy away from how your disability is progressing: we’ve all been there - hiding mobility aids for a photo or not wanting to look ourselves in the mirror. Invest in some underwear that makes you feel amazing, own those mobility aids, face up to the discomfort and challenge it!
Have some solo fun, even if you usually have a sexual partner. Get to know any changes that might be happening and figure out the best ways of mitigating their impact on good sex. Play, play and more play. Accept that things won’t always go to plan or reach a satisfying climax, but this is a fluid and ongoing exploration that should above all bring pleasure.
If you are impacted by any of the issues in this article, talk to your doctor, or otherwise for further links and support, you can visit MsTogether here.
