How To Hack Your Sex-Life When MS Messes With Your Mojo
I’ve been reluctant to write about sex and MS because whenever I include words like ‘boobs’ or even ‘high heels’ in my posts, I get spam from Russian porn sites, and creepers from wherever creepers live (Alberta?). Plus, my parents are alive and they tell everyone at church how great this blog is. And anyway, if you have MS, you already know that sex can be complicated. Unless you don’t. In which case, you might be beating yourself up over something that isn’t actually your fault. And that seems like a good enough reason to write about this *ahem touchy subject even though we have a family baptism coming up, and I’m gonna have to look all those church people in the eye (Wassup, St Matty’s).
I’d read about the possibility of MS messing with my mojo in a pamphlet when I was first diagnosed at 22, and once I was married in the eyes of God (cough), I experienced a handful of the symptoms that are collectively known as sexual dysfunction (SD) first hand. It was scary and confusing and frustrating. Though SD is extremely common in MS, most patients never discuss it with their neuros (R-Dogg would literally faint); or, I should say, most neuros never discuss it with their patients, because the onus should really be on them.
Sex with MS
The first few times my elevated body temperature and physical exertion left me incapacitated after intercourse, I think The Banker thought he was the man; like, what kind of super-hero love-making skills does it take to render your girlfriend (he means wife) temporarily paralyzed and literally seeing double?
As I would later find out, MS can do a lot more than turn your post-coital (ew) legs into spaghetti while you try to cool down and focus on how many fingers you actually have. According to every edition of Cosmo I ever read, the brain is the most powerful sex-organ. Which isn’t particularly helpful news for those of with brain damage. Like, duh. We know. That’s the problem. The brain is in charge, and if you have MS, this complicated organ can come for your sex life from three directions. Here’s the skinny:
Primary Symptoms
Demyelinated nerves can directly impair sexual function by causing diminished sex-drive, decreased lubrication, problems with orgasm, and erectile dysfunction.
MS is literally a boner-killer. Medically speaking.
Before you say Netflix and no thanks, know that there are some ways you can outsmart your brain and manage these symptoms.
Diminished sex-drive
A low sex-drive can be caused by MS, but certain meds can interfere as well. Talk to your doctor to see if your prescriptions are possible culprits and if a medication change is possible. Low levels of testosterone are more common in MS, and can contribute to feeling over it, so consider getting your T tested. This goes for women as well.
You don’t have to want to do it. You just have to want to want to. Then figure out what gets you there. I’m not gonna tell you to turn off all the lights and drink a bottle of Arbor Mist. You do you.
Dryness
Seems obvious, but get yourself a proper water-based lubricant. Then use lots of it. Do it on your partner’s side of the bed.
Problems with orgasm
I’m not particularly into Spoon Theory (technically it’s a metaphor); but if I were, I’d tell you that sex costs all of today’s spoons and some of tomorrow’s. And anyway, energy reserves should be measured in batteries. And speaking of batteries, get yourself something with batteries. Powerful ones.
Erectile dysfunction
Dudes, if you haven’t heard (seriously?) there are highly effective medications to manage your man-stick, and you don’t have to wait until you’re going grey to get them. So like, get them.
Secondary symptoms
The secondary symptoms that further try to cancel your sex life, are the symptoms that aren’t directly related to sexual function but definitely get in the way of it. Like, it’s hard to be in the mood when you’re dealing with bladder and bowel dysfunction, pain, fatigue, spasticity, weakness, and 17 other things I’ve over-looked. Communication is great, but it isn’t always easy to say:
“Not tonight, honey. I can’t trust my bowel RN.”
When you’re dealing with any combination of these symptoms (because really, who has just one?), sex can feel like yet another thing you have to do while you’re struggling just to get through your day. And, of all these symptoms, fatigue might be the joy-sucking Dementor-In-Chief.
Oh, you wanna do it? Okay, but do you also wanna make dinner? Finish the laundry? Clean the bathroom and everything else I was gonna do tonight?
Just kidding. I was gonna do none of those things (scroll through Insta, drink wine from the bottle, sleep in the shirt I wore all day). The point is:
Sex tricks the chronic illness brain. You see a bed and your brain is like, Oh yeah, I wanna lay down. Ooh, are these flannel sheets? Sure, I’ll have a glass of wine. How relaxing. Then suddenly someone expects you to do stuff. And that stuff is suspiciously like exercise.
This was not supposed to be a place of exercise.
But, just like exercise and the surprised feeling I have every single time I don’t wanna do it but then I’m glad I did ‘cause afterwards I feel awesome, the feeling only lasts until I try to bend my legs. Or stand up. Or make it to the bathroom before a UTI sets in.
What you can do about secondary symptoms
Secondary symptoms need to be addressed regardless of their impact on your sex-life. There are medication and lifestyle modifications that can improve things. The following strategies are add-ons to an existing MS management plan. As always, not medical advice.
Spasticity
I try to take an extra dose of my spasticity medication before the main event, but always talk to your doctor. Try stretching; or better yet, get your partner to help you stretch. Too medical? I don’t know. Guys; I don’t write for Cosmo.
Pain
Remind your partner about spots that are painful or sensitive to the touch. And then remind them again.
Bladder/bowel
If you’re stressed about the state of your bowel or bladder you are not gonna have a good time. A sense of chill is important. The Banker is used to hearing, “Can you hang on a sec, I have to pee”, and he will take what he can get. But this might be trickier to navigate in new or casual hook-ups. Do it when you feel safe.
Weakness
Cosmo didn’t cover this (note: I did not verify this); so, talk to your doctor, or just do what I do, and let your partner do all the work. If this seems selfish, it’s because I am.
Fatigue
Hacking your sex-life with MS may mean the death of spontaneity; but like, get over it. Like most things with MS, sex takes planning. Put it in the calendar, and budget your energy accordingly. Maybe don’t hit the gym and the hay on the same day. Sex should totally count as physio anyway. Make a plan, but agree on an exit strategy. MS can turn on a dime, and it can be comforting to have an agreed-upon, no-blame, safe-word pact that lets you opt out without having to explain away pain, fatigue, or a sketchy bowel. Just say ‘banana’, and write a rain-cheque.
Tertiary symptoms
MS can lead to depression and anxiety, even low self-esteem. MS can change how you feel about your body. There may be times when you don’t even recognize yourself. I’ve sometimes felt like so much has been taken from this body, it’s hard to imagine it has anything left to give, and in my darkest moments that someone else should want it.
Internalized ableism would have us believe that people with disabilities don’t need, want, or, worst of all deserve to have a healthy sex life. We don’t have enough (any?) sexy role models who happen to have disabilities; so we can hardly be blamed for struggling to recognize our own desirability.
Partners of people with MS have admitted to feeling confused by invisible symptoms. They may blame themselves for a lack of bedroom action. They may feel rejected, believing that your pass at passion means you’re no longer into them. They might feel guilt for wanting you so bad when they know how expensive sex is for you. Maybe they’re afraid to bring it up.
And maybe you feel for them. And maybe you don’t. Because, as if the list wasn’t already long enough, now you have to manage the emotions of someone else. You find yourself re-assuring them:
It’s not you. It’s me.
Which is bullshit of course. And a lousy thing to tell yourself. It’s not you, it’s MS. And you are not your MS.
What you can do about tertiary symptoms
Address and treat depression and/or anxiety. Not just for the sake of your sex-life, but for your overall well-being.
Do what you need to remind yourself of who you are, and to feel a little more desirable. It can be hard to feel sexy when you haven’t showered since the solstice, and you don’t want anyone to smell your hair. Spiffing up can add to fatigue, but even I can admit there’s something energizing about smelling like not dirt. Being the version of you that feels the most welcoming doesn’t have to happen every day. Budget accordingly.
Sex can make any of us vulnerable. While you’re worried that a mobility aid has you looking more feeble than fetching, your partner definitely has their own weird issue, like a third nipple they’re terrified you’ll discover. If you’re having trouble finding style role models, check out hashtags like #babeswithmobilityaids. It’s not just me posing with cute rollators. There are people with varying degrees of disability putting themselves out there to help change the narrative about what it means to be fab.
What your partner can do
Partners, know that we want to be the sex-machines you deserve. Managing any or all of these symptoms is exhausting and overwhelming. You can help hack this. In fact, you must. The effort to keep the flame alive can’t be one-sided.
Don’t give up on sex with MS
Loneliness is a major problem in MS; one that can literally shorten lives. Doing what you can to stay connected is as important as any medicine you could take.
It’s normal to grieve what you’re going through. Cosmo promised me my sexual peak was at 30, and the universe gave me MS 8 years earlier. It’s not fair, and freaking out is entirely justifiable. But grieve and get on with it. You don’t have to let sex become another casualty of this disease.
Stay sexy, Trippers.
Update: I just googled Cosmo, really to see if it still exists (I read VF now, because I’m an adult). Anyway, it does. And let’s just say, it’s way more…thorough? than I remember. There’s a whole section on interabled couples, with some very NSFW images. Go and be inspired. Nice job, Cosmo (things I thought I’d never say).
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Hey, not all creeps come from Alberta!! You’re absolutely right about everything else though!?❤
I mean, I haven’t met everyone from Alberta, so I guess I’ll have to take your word for it.
Love your posts. You say it like it is thank you.
Thanks for reading, as always!
For lube, pee, and all other wet happenings during loving, I highly recommend a Liberator Throe. You can thank me later ❤️ NSFW link:
https://www.liberator.com/fascinator-throw.html
I’m intrigued. Thanks for sharing.
Thank you for taking on this important and very sensitive subject Ardra. MS steals so much from us, then leaves us wondering about our value – in our relationships and in life. I often find myself apologizing because MS has left me disabled and I just can’t do what I used to manage easily. But it’s NOT my fault! The blame should be on this horrid disease!
I like your comment, “Grieve and get on with it” so much. I would add “one step (shuffle) at a time and don’t let MS take all the joy out of your life”.
Thanks for reading and for commenting. I’m trying really hard not to apologize for the things MS has wrought. Most recently trying hard not to apologize to every Uber driver about short-distance trips. (I overtip instead–but it feels better than apologizing.)
Well said
Awesone righting, MS rules sex if you let it.
Thanks for reading!
As usual awesome blog – you had me laughing my head off and reading the pertinent paragraphs to my husband while he’s trying to watch Live PD ?
Defo in his best interest to read this one!
Same! My healthy husband was trying to “rest his eyes” in front of the TV. So many truths in this article! I am thankful my kiddos arrived before I was diagnosed or we would still be waiting for the “perfect moment”.
I used to wait for the stars to align, but that puts a lot of pressure on the ‘once in a blue moon’ event. Sometimes good enough is good enough.
I’m a dude with MS. I didn’t realize that the blurred double-vision and dizziness right after orgasm was an MS thing… thanks for this article! I have kinda given up on sex/relationships. I hate having to have that discussion with someone that I’m totally into and that is into me as well, telling them I have MS. I hate seeing the pity come into their eyes, followed by the looking for an exit strategy. It almost feels like MS is an STD to most people. Feels like I don’t have anything to offer anyone besides dealing with an uncertain and terrifying future.
Dude, I hope at some point you decide to give sex and relationships another shot. Yes, it is a challenge to a relationship, BUT there are so many examples of couples who successfully navigate this and manage to thrive. Having MS doesn’t mean you have less to give. Hugs to you.
Excellent article. Dr Boster has a video about this subject and recommended a pelvic floor therapist. I went to see her and have continued. So much information and advice. Thanks for broaching a topic which isn’t well discussed. I definitely would not have brought it up but glad to know there is helpful advice.
I love Dr Boster. He is a dream neurologist. I can’t recommend his dorky videos enough.
So glad to hear the pelvis floor therapist was helpful.
You did have me cracking up over this very sensitive subject!?
And then almost crying. Your blogging is so helpful for so many.
Keeps me keeping on.?Thanks!
That means a lot. Thanks for reading, Carla!
Thank you very much Andra <3 My daughter was just diagnosed in 17 . She is pregnant with her 4th child , She had a 3rd. named "Hunter" but My Granson was still born at 40 wks. !!!! Why is it not talked about that it is passed on !!!!! I know so ,many people I know have children with the same damn disease !!!!!!!! I pray my son is ok for ever <3
Hi Leslie,
I’m so sorry to hear of what your family is going through. You’re right that there is a genetic component, but the risk of passing MS to your children is still considered small (I think it’s 5%). Of course, this is no consolation for those who have it in their families. Indeed my brother in law and his mother both have MS.
I saw myself in your again excellent blog although I don’t have confirmed MS (but I still see myself as a member of the club Trippers!). I have combined symptoms of MS, incomplete spastic tetraplegia and PD but nothing confirmed for 5 years now – undiagnosed. I have so-so, weak or none sensation from my waist down, depends on only moon know what so my hubby and I are used to his questions and my replies “Do you feel anything? Maybe here?”, “Sorry no”. Better to be honest. But body massage is also a very nice thing – and useful so I recommend it!
Thanks for reading and for commenting. I can only imagine the frustration of being undiagnosed.
Massage is always an excellent idea!
To all that, I’d add that even if it’s no longer a delicious no-tickets Tilt-A-Whirl, even on the days it feels like one more job, sex is essential to any long-term relationship complicated by MS. It’s the best way to shove the disease out of the center of your relationship and into the corner where it belongs. It’s a the intimacy equivalent of a triple espresso. It’s a reminder of all the reasons you connected to begin with. If MS has the ability to suck all of the oxygen out of the room, sex helps bring it back.
Well said. Thanks for commenting, Kristin.
Thank you for this and thank you so much for your blog. I was diagnosed in 2015, late onset (I was 58) and while I know MS is dreary, I got tired of reading dreary posts and messages. Your blog is a breath of fresh air and I’m glad I found it.
Thanks for reading. I’m sorry a dx is what brought you here, but happy to have you!
Awesome honesty. Thank you for sharing. I promise, I’m neither from Russia or Alberta.
Thank you for this!! I can’t tell you how reassuring it is to know that I’m not the only one losing function after sex. I worried the hell out of my husband when I basically couldn’t walk for 12 hours (he had to help me to the washroom all night) and now I seem to get a UTI every time we’re amorous. In order to have sex, I have to pre-book an appointment with the doctor for a Macrobid prescription and drink several litres of cranberry juice. So much for spontaneity!
I like D-Mannose tabs for UTI prevention. It’s the active ingredient in cran without all the sugar. Thanks for reading and for commenting!
Wow! So glad to be catching up on the tripping blog. This one really I needed so badly to read every word. I just wanted to share information about UTIs. After I had so many (6 in 1 Year) my Neuro/urologist put me on Macrobid low dose antibiotic. 100 mg daily. It prevents E. coli infections. And he put me on Ellura. It was developed by urologists after a lot of documented research and is a once a day capsule that contains only the component in cranberries that stops bacteria from adhering to the walls of the bladder. Goggle it. The doctors sell it directly over the internet, keeping it out of the hands of $BigPharma$ to keep the cost down. It is about $90/mo. with specials for repeat customers. IT WILL NOT CURE AN INFECTION!!!!! But, once you are free of infection, it will prevent infections. They recommend doubling the dose when having intercourse. I have not had a UTI for over 5 years. If it is not working for you they will work with your doctor to help you succeed. Sorry so long! I am not getting paid by them. Just a believer in the product.
Thank You So Much..reading to boyfriend some of it while hes watching his race..(that is a No! No)..he has to go through some of these things with me..completely understanding when I didnt even umderstand why I was feeling this way..he thought it was Hilarious also..he now umderstands me more now!! Thank You!
I think it’s so great when partners read some of the content (whether it’s here or elsewhere) that helps us understand our disease. When you’re in a relationship, so is your MS. (Check out my post on sex if you haven’t already).
Thank you!! Your blog has really inspired and helped me! This post in particular is so great!! I really struggle explaining to my husband why I am not in the mood … again…
I also use D-mannose to decrease urinary tract infections. I also make sure to have both me and my husband shower prior to intercourse. Seems to have stopped the UTIs.
I also use baby wipes every time I visit the bathroom. So far so good.
I’ve really stepped up my hygiene and it’s working!!
You are simply the bomb. That is all.
Thanks for always keeping it real – and for giving us all the pep talk we need from someone else who understands.
The last time I had great sex was 2009 and I peed all over my husband….. I think he was totally grossed out (although he handled it well). I was dx that year. That was the last time we had sex, 3 years later we were divorced. I have sex a few random times since, sometimes good-sometimes not but I haven’t had an orgasim since. I miss the closeness not so much the act, maybe I would feel differently if I could actually maintain a relationship.
Thanks for this! Made it much easier to have a conversation with my partner. Sometimes I feel like he feels unwanted, and I haven’t been able to find the words to describe where my head is at, but now I’m able to send this to him and start having the conversation.
Awesome! This makes me so happy.
Spontinanity is very good, but it definitely takes some planning! Like, shaving and grooming up my lady-bits that I’ve neglected for (well over) a week. Just the thought of a shaving session drains any energy I could possibly have for the main event! But I want it to be quality if he’s not getting quantity. Fatigue is my #1 symptom, among the 20 (give or take).
I say, skip the shaving and just turn off the lights. ?
Yo Tripping-
Thanks for including dude issues in your article (especially in a non mocking way). You nailed it (heh. Heh. Nailed it) with the brain being the biggest sex organ. and you stombled onto a better solution so thank you for that. Stupid vasal vagal nerve.
Sincerely,
Frank Alias
P.S. The Urologist confirmed things. Don’t need what you’re thinking. No ED in euphemism.
I am in Australia and have just been granted NDIS funding this year due to MS. It’s an obscene amount of government funding and I was taken aback as to how generous ??!
I know I’m losing my ability to walk but have a zippy electric chair that is pretty fun..
I’m being clever with this funding and have the NDIS funding pay for 2 strong and highly skilled males (ex lovers) to paint my house and convert my downstairs to another fab living space for when I can’t do stairs. At present they come on different days as I’m not ready for them to cross paths!! That would be like putting two bulls in a paddock together ?
Cuddles & massages (sex ) and fishing and shopping and picnics and country drives are all on offer (as long as their work gets done!!)
They get paid well so it’s a win win for us all at present..
Girlfriends think I’m playing with fire ? but I’m desired and treated like a Queen and getting work done so I’m going to run with it .. figuratively speaking ?
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