A while ago, I wrote about how we were maintaining the mechanics of still getting it on (much to the disgust of our kids). However, there remained a few things that left the elephant in the room staring at us with “that look”. The joys of Ehlers Danlos Syndrome mean that no part of me isn’t stretchy to some degree and throughout my life, that has had some interesting sexual impacts.
My back pain began in my teens – I remember walking around Sainsburys with my mum doing plies holding onto the shopping trolley to just take the pressure away from my lower back. It was also around this time that I lost my virginity and had the weirdest conversation. Initially, I took it as a compliment that my then boyfriend asked if I was sure that I hadn’t ‘done it’ before. I was clearly a pro…
But then he argued that it should be tight and hard to ‘get into’ a virgin & I wasn’t. As first times go, this was at least memorable if not massively offensive. For reference boys, this is shit pillow talk and pretty much sealed the deal for me to piss off and date his best mate.
I spent a good deal of my teens & early 20s tired (I once fell asleep on a base speaker in a club) and back pain continued to twinge. But it really went for it in my early 20s & more so when, aged 24, I carried Beanpole to almost term (she arrived at 35 weeks after medical intervention to keep her in, 16 months later TinyPants plopped into the world at 32 weeks in a similar way). Back then I had “it’s just back pain” & “all women get SPD”. What I didn’t know was that my tendons were stretching through the magic of hormones & had no intention of snapping back up like youthful elastic, preferring the more relaxed overcooked spaghetti look.
The ligaments you see before you hold a woman’s pelvis together. These are strong rope-like connective tissues made up of collagen (That’s the glue that holds us together, and also the tissue that is affected in people with EDS). As we get older, these can get tighter meaning that we lose our range of movement. For me, this means where I could once lay on my back and place my feet square on the floor touching my shoulders, I can now only lick my own feet. Excellent party trick, superb pulling technique, utterly inadvisable.
So, why the image? What has this got to do with sex?
Well, with progressively looser tendons, ligaments, & muscles, I caused a number of interesting injuries to my pelvis & spine over the years & by the ripe old age of 36 have racked up herniated discs at s5/S, L4, L3, T4, & C5 alongside having dislocated my pelvis itself and dislodging the SI to an extent that the joint that shouldn’t move does in face shift on a daily basis. Most of these have been treated using rest, anti-inflamitories, and over a decade of opiate based painkillers. I’m thankful for this, having reacted badly to facet joint injections and with surgery not advised with EDS due to complications & healing time. The down side of this is nerve damage. I no longer have real sensation in my feet (as noted when I had to be told that I just tipped boiling water on my foot this year!) and my pelvis is equally affected in the no sense, no feeling category.
It’s been a gradual decline, but the past 12 months have brought about a requirement to be aware of the sensation of needing to pee which isn’t always obvious. It’s either all or nothing, and by the time I am aware I need to go, it’s often at critical mass. To my utter horror, on a few occasions my body just hasn’t cooperated in being coordinated enough to get onto the loo with pants down pre-release. This is the grim indignity of a body that resembles a car that hasn’t been MOTd in years.
The bladder isn’t the only internal organ affected by EDS that requires evacuation (look away now readers of a delicate constitution)… a combination of being stretchy & taking opiates has equated to an interesting dance with IBS. There’s very rarely a nice happy regular medium, but more disconcerting is what once used to feel crampy or bloated, now feels nothing. There is essentially no urge to go aside from a thought process that says I ought to. It’s a set of symptoms that once sent my doctors into apoplectic frenzied activity and now appear to be a sign that I’m still holding things together by managing them.
The one thing that hasn’t been discussed with my medical team (and this post is partially me getting my thoughts in order for bringing it up at my appointment tomorrow with Pain Management) is the lady parts.
Mr Geek & I started off our relationship by necking on his bed & pretty much only left it for essential food & more wine for the next few months. This laid the foundations for the following decade of lusting after each other. He can still make me go all wibbly by biting my lip, or just stroking my cheek. Suffice to say, sex is quite high on our list of marital priorities. So when I began to struggle to enjoy it quite as much as he was, we started to worry. Initially, we put it down to pain levels (Although, actually a bloody good orgasm is a massive pain reliever), and then the cocktail of drugs, but eventually as my legs showed more signs of losing feeling and the ‘saddle’ area around my perineum felt numb, we realised it was nerve damage.
So how do you continue to skew the mean average marital sex figures when you’ve gone from multiple porn like orgasms when he so much as looks at you to struggling to maintain lubrication let alone pull a Meg Ryan. Well, just like every other aspect, we adapted things:
Not everything in life has to be home made & the same goes for lubricant. Water based lubes and my skin don’t mix, but a liberal application of coconut oil (approx. £5 in Tesco / Sainsburys, or posh stuff from Waitrose gives the added amusement of looking them in the eye as you buy it, knowing damn well that this is not for plummy middle class baking, but will be making your genitals taste tropical!) not only works a treat, but smells great too 🙂 It also has a beneficial impact on the tiny tears that I’m prone to where my skin is paper thin.
We’ve had to start again with my body to work out how to get the engine going again. Picking up some good vibrations with a padded vibrator will often do the trick (if you have loss of sensation, do not use a hard vibrator – one word : bruising). Don’t feel bad about needing some individual time with this initially. When you’re already falling apart, navigating 2 sets of overexcited hands can cause things to get lobbed across the room in a strop… whereupon the thing is still quite literally in motion across the bedroom floor. Cue laughter.
Physically, the earth might not move anymore. The muscle contractions remain, as does that lovely flow of endorphins, but what once was a Thunderclap is now muted to a muffled rumble. I won’t pretend that it isn’t upsetting, but I’d rather a rumble than just rain.
Keep the light on. When one sense is dulled, another takes over, and with 90% of my old moves far to painful to attempt, there’s nothing series than seeing Mr Geek get undressed. I’m thinking less with my crotch and more with my mind (yes, women also make decisions using that brain in their pants).
Switch positions. Use every pillow known to man. Make the most of that adjustable bed. If it doesn’t feel good, don’t do it. We’ve surprised ourselves by getting into easier positions for my joints, then discovering that… OMFG keep doing that!
With all these adaptations, we’re coping well, but there’s still a little voice in my head suggesting that I mention it at pain management and see if they can suggest other ways of adapting our sex life, or even if there’s some magical way that I could resurrect my clitoris Jon Snow style.