Being sexually active whilst living with chronic pain
Written by Isabelle
Photo by Anne Barlinckhoff
Why the equation of sex and pain? It’s twofold. One, I’m a kinky gal. Two, I have Vulvodynia. Therefore, both sexual activity and penetrative sex lead to pain. One that I rather enjoy, and one that I very much suffer against my will.
Let’s start with the fun stuff, because as I’ve already said, sex should be fun. For me the pleasure of kink is down to submission, and pleasing someone else. I am a massive control freak in every other part of my life – I’m a career driven high-achiever, who overthinks pretty much everything I do. So, for me there is nothing more enjoyable than being with a partner who I can trust enough to take absolute control of me and enjoy themselves. There is a specific tingle of bliss and arousal I find, being tied up, blindfolded, completely naked, and unsure if the next sensation will be a stroke of pleasure or the sting of pain. I am personally not much of a masochist (I learned that lesson in a serious way recently after finding myself in the hands of a sadist, not a mistake to be repeated), but I have found pleasure in the pain of a deserved punishment.
For any vanilla readers, it’s important to remember that not all types of pain will be pleasurable, and different people have very different pain tolerances. I read a kinky blog once which made this point beautifully – you can’t break a submissive’s arm, and expect them to thank you for causing them pain, because not all pain is made the same. I love being spanked with hands and floggers, but only at about 50% intensity, so that I can last for longer, rather than a couple massive hits that knock me out immediately. This is why the pain of my medical condition won’t ever be a turn on – it’s the wrong type of pain.
The definition of vulvodynia according to the NHS is as follows: “Vulvodynia is persistent, unexplained pain in the vulva”. Sounds super fun, doesn’t it? For me that pain reveals itself as two ‘pressure points’ on the lower side of my vulva that create an intense burning sensation when stimulated. While it is estimated that 15% of women will suffer from vulval pain at some point in their lives, there is very little research on what causes it, or how to treat it, it is often misdiagnosed, and vulval pain is hardly ever talked about.
My personal experience speaks to some of the reasons why that might be the case. I consider myself to be sexually liberal and open, if quite sexually inexperienced until I went to uni due to my single-sex education. Similarly, I am well-versed with (sometimes embarrassing) doctors’ appointments from my two other chronic conditions, ulcerative colitis and hidradenitis suppurativa (try learning to spell that aged 12). Yet in spite of this background that should have aided having a conversation about my sexual pain, I still struggled to muster up the courage. It took years of inability to masturbate using penetration, a 9-month relationship, and one extremely painful instance of penetrative sex to take myself to a sexual health doctor, and at that point it was only because of how STI tests worked in my uni town.
I know I should have been tested long before that point, but either way I ended up in a doctor’s office, wincing and hissing in pain as a cotton bud was merely swiped over my vulva. I got an immediate diagnosis, but no answer to the pain I had been feeling for years. I was recommended to go to a private specialist clinic in Chelsea, and to possibly go on anti-depressants because they had been known to block the nerves that cause the vulval pain. Neither of these choices are paths that I have followed as of yet. I am waiting for an NHS gynaecologist appointment at the hospital where I get all of my other treatment (which in the age of COVID-19 who knows when that will happen). I have nothing against the use of anti-depressants for depression, but for me it felt like a big risk to take on the side effects, when this treatment might not even work, and at the time I was already taking 11 pills a day.
Instead, I have spent some time with dilators, which seem to help a little, but mostly act as an opportunity to practice dealing with pain. I have also tried the anaesthetic lidocaine, which I learned when picking up the prescription from a very confused pharmacist is generally used for the insertion of catheters. While the sensation of numb vagina is something every vagina-owner should try at one time for sheer weirdness, it led to the least sexy sex experience, and quite a bit of anxiety about making sure no other human appendage touched me, for fear of also being numbed.
Instead of true cures, I have taken the route of communication. When playing with kink, the first step is always having a serious conversation about limits. Unsurprisingly one of my hard limits (i.e. cannot be crossed, and should not be tested) is vaginal penetration. As someone who does a lot of dating, I can assure you this is not a comfortable conversation to have after a drink with a guy you met on Hinge or Tinder or anywhere else. In fact, it often makes me feel difficult and unattractive, the opposite of how I like feeling as a submissive. I find that I try and ‘make up for it’ by offering a really great blowjob and anal (because what guy doesn’t like anal?, and because I also like anal). However, this also creates a vetting process for me – a way to ensure my partner respects me, and that I can trust them. If they understand the deep, raw physical and emotional pain that they can cause me without intending to, by trying to do one of the most natural and pleasurable acts known to wo/man, then they can also be trusted to cause me the truly delicious pains and pleasure of full submission to their will.
Chronic pain is a journey, one that is often associated with loss. As it stands there is no course of treatment that will allow me a normal, casual sex life. Sex will always require a conversation and a disclaimer. This pushes me further towards kink, where people understand the requirement for this conversation, but it doesn’t make the loss of easy pleasure sting any less. As a deeply sensual person, this pain can strike me to my core if I let it, because of its infringement on the sexually liberal person I wish I could be. I can’t yet see my pain in a positive light, but I can try and mitigate the distress it causes me through my joy and love of other sexual pain, and learning more and more on how I turn pain into pleasure.
Isabelle is a recent grad and London native, and excited to explore her sexuality using all the city has to offer. She’s pretty kinky, a massive feminist, and can be found ranting about her dating life on her Instagram