Let’s Talk About Sex Baby….

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.


No Sex For US Please. We’re Disabled.

This time tomorrow night Mr Geek & I will be all tucked up in a our new bed. We waited for the sales,  then used the back payment for my PIP to buy an adjustable bed so I could raise my feet at night & sit up when needed. In order to do this, we had to by 2 single beds and have them fixed together with a bracket. Of course what this meant was were going from a double bed to a superking size (6ft wide).

We know that having an adjustable bed is going to make a massive difference to my (and consequently, his) quality of sleep. But this brought up 2 very interesting points:

1. Adjustable beds aren’t normal size in terms of length, so require “special” bedding. Of course, because it’s linked to disability, the price tag rockets. Being disabled is expensive. Even a clean sheet to sleep on costs more. This irks me.

2. People make assumptions about our relationship now.

“Why not just have them as single beds?”
“You should have single quilts, not king size. Then you have one each.”
“It’ll be nice having a bed to yourself. Then she won’t keep you awake when she’s having a bad night.”

All of this roughly being translated as “you’re not in a proper relationship where you have sex anymore”. Well more fool you bedding judges. We may have 2 single mattresses, but we have a giant duvet to share because being disabled doesn’t automatically stop your libido. Sure, we have to make adjustments – dislocating a hip during orgasm is a sure fire way to put of most partners. If anything, losing my and being in pain has created a stronger physical bond as we spend more timobilityme soothing aching muscles & bones with warm oil & stones. This requires nudity. And, well…

For those finding themselves sinking slowly into reduced mobility (or careering down like an out of control skydiver like I did), all is not lost in the boudoir department, but I’ve learnt a few things this past year.

If it isn’t comfortable, don’t do it.
You might have been able to reverse cowgirl with full yee ha’s last year, but if your body is complaining, you’re not going to.enjoy it. You shouldn’t ever feel compelled to do something that you don’t enjoy. If it’s not working for you, try something else.

Relearn how your body works
You’ve been presented with a body that stopped functioning as you expected it to. With such frequent subluxations,  I discovered that an orgasm in the wrong position landed me with my pelvis out & a pain flare through my back for days. So we went back to basics.
On your own, or together, investigate how things feel now. What I’m suggesting here is masturbation. There, I said it. It’s far more gentle than full penetration, and allows you to use mindfulness techniques where you are aware of where your body is as things start to feel nice.

Use props
Maybe not the ones you’re thinking of. I’m talking wedges and pillows here. Create your own special sexy nest where you’re not having to support yourself on painful joints. There are plenty of tips where a pillow is suggested under the hips – take this a step further by supporting anything that needs supporting. Gym ball… I’ll just leave that idea hanging there for you.

Massage isn’t just medicine
When we receive (and give) massage, the neurohormone dopamine is increased. This not only improves our mood, but makes us cope with pain easier. Relieving pain before even suggesting any other naked fun is a good plan in itself. Using trigger point massage (aka pressing on those painful muscle knots which are generally found around the shoulder & neck) stimulates the release of endorphins – the same hormone released during exercise. These not only help reduce pain now, but can continue having an effect for up to 48 hours. 
In addition to dopamine, our levels of serotonin are increased with massage, affecting our overall mood. With serotonin also known as “the live drug”, creating a scenario where we are relaxing and  feeling less pain will automatically predispose us to sexy time.

So there. Lessons learned for #TLDR
– only do stuff you want to do
– masturbate more
– use pillows
– massage more  in non-naughty areas
– oh, and make your bedroom a nice place to be

We bought the prettiest duvet set with butterflies on them! This is utterly unlike Mr Geek, but we (I) spend so much time in bed these days that we’re trying to make it as welcoming as possible. We both like purple,  so have gone for a white and purple theme for the room.


Stock image of our bed set - I'll upload the real thing soon!

To finish this all off, I ordered a white butterfly lampshade and 3d stick on wall butterflies to go over the corner wall.


I’ve never wanted a girly bedroom before, but we threw each other a curveball on this one. We’ve gone from a Marvel Hero duvet set to 3d butterflies. Maybe we’re finally growing up…

Sources : http://www.pacificcollege.edu/news/blog/2014/11/08/neurohormonal-effects-massage-therapy

Hello? Is it your wife you’re looking for?

This evening I’m determined to have some grown up time with Mr Geek. My body is suggesting otherwise.

The zantac is finally taking the edge off the reflux, but the backs of my thighs are joining in with my spine, hips and hands in a chorus of my theme tune “Everything feels broken” (everything is basted in a tonne of deep heat… everything feels broken… We’re living the dream….)


I wish it would piss off for just one evening so I could feel vaguely female and alluring (rather than nauseous and slurring).