Sex Positivity, Sex, and Vulvodynia*

*My condition is actually called vestibulodynia, which is an arguably “less hardcore” subset of vulvodynia, characterised by provoked pain, however I will be using the term vulvodynia throughout this story.

Image from the Instagram account of @peacewithpain , a platform based in Mexico to support women who have vulvodynia (

As a someone who is queer, polyamorous, kinky, and suffers from vulvodynia, I function in two distinct social circles. Most of the important people in my life, be it my friends, partners or lovers, identify as sex-positive and share with me at least one of those first three labels. My other world is in the support groups for people with vulvodynia and similar conditions that I am a member of. Those groups are the only places where I feel the vulvodynia aspect of my daily and sex life is fully understood — the people there are not just empathetic and well-meaning, they are also going through many of the same struggles that I am going through. But when entering this “vulvodynia world”, I always have to leave the other parts of my identity by the door. In there I am assumed to be straight, monogamous, and vanilla. For instance, the message that PIV (penis-in-vagina) sex is the best and perhaps only real sex is loud and clear. Beside the fact that it is obviously a pretty dangerous belief to hold if you can’t have painless PIV sex, it also erases people who don’t always have sex with a penis involved (well, at least not a real one *wink wink*). This is just one example — everything I see on those groups is written from a perspective so foreign to me, that I sometimes wonder if I have enough in common with these people to warrant me even being in them.

Both those circles mean a lot to me and I draw a lot of strength from them. They’ve helped (and continue to help) me cope with all the trauma, fear, insecurities, and emotional pain — because vulvodynia is just that kind of special package deal. Nevertheless, my slightly unusual combo of “traits” sometimes makes me feel a bit alone in my experience in both circles. I wanted to write this piece to talk about some of the challenges and struggles I face as someone who spends a lot of time in the sex-positive community, enters numerous sexual situations and at the same time suffers from vulvodynia.

Navigating sex-positive and often quite sexual circles as a person suffering from vulvodynia can be… a strange and often trying experience. On one hand, one has the comfort of being surrounded by open-minded people, who are unlikely to be judgemental or to treat talking about vulvodynia as taboo or inherently sexual. That in itself is very refreshing —I’m disappointed by how many people have sexualised me or my issue or assumed I’m talking about it to get attention (well I guess I am but on a global rather than a personal level) simply because it has something to do with vulvas and vaginas. On the other hand, being immersed in spaces that often talk about genitals, sex, and sex toys can get a bit overwhelming or even triggering at times. And it isn’t really anyone’s fault (barring situations when it is, obviously). Like many people with this condition, I still struggle with coming to terms with this loss and sometimes I feel like the grief I feel will never end. Like mate, I would give anything to not feel this pain and to try out that awesome dildo shaped like a tentacle (???) but you know — it is what it is.

Having vulvodynia also means that, try as I might, I just can’t identify with some of the ideas or slogans popular within the sex-positive movement — even if I support them and the rationale behind them in general. A good example of this are the efforts to de-stigmatise and celebrate vaginas and how amazing they can be. While I wholeheartedly support the idea because I am sick of all the ways in which society shames them (their appearance, smell, or perfectly normal things most people who have them experience — such as periods), I personally have a very bad “relationship” with mine. I became more aware of this dissonance only recently, thanks to what started as a lighthearted conversation with a close friend. She shared with me her idea for a superheroine who would use her pussy as a weapon in the fight for a world that embraces our genitals. Talking about it helped me realise that while on a general level I thought that was an interesting and amusing idea, on a personal level I noticed something inside me started to protest.

Vaginas may be great in general but mine is a source of physical and emotional misery for me. And while my reasons are very different, I feel I can relate to the feelings of dysphoria that some non-cis people feel towards their vaginas. If it were possible and if our world were not rampant with violent transphobia, I would swap mine for a penis without a second thought. No, not even a vulvodynia-free vagina — our internal plumming has so many issues that I’d rather not risk the chance of dyspareunia or chronic pain ever again. My vagina is the only part of my body that I am unhappy with and I can’t see it changing unless the pain goes away — hating my vagina is not caused by me internalising the toxic messages I get about it from society — it’s caused by very real pain that I experience every day. The last thing I want to do is try and force myself to love it or pretend that it’s my superpower and source of strength when really it’s my Kryptonite.

When my vulvodynia showed up (which you can read more about here), I was pretty inexperienced and only just exploring sex with other people. Ever since my early teens I was kind of a sex nerd. Living in a conservative, Catholic country with virtually no sex-ed, I turned to the internet. I was a voracious reader and I feel very lucky to have been born in a time where I was able to discover a lot about my sexuality independently and so early on. I was also fairly reserved and uninterested in sex with other people — I was a big fan of masturbation and orgasms but didn’t really feel ready to share that with anyone until I turned 18 or so. That was when I had my first, very positive experience of sex with another person. It was fantastic and the only vulvodynia-free sex I’ve ever had up to date.

Obviously, once my vulvodynia appeared, I quickly became very frustrated, which led to a lot of bad decisions and a lot of bad sex. It was something I had to learn the hard way, but I now know that being picky about my sexual partners is one of the most important parts of my self-care. Nothing has changed in what and who I find attractive but what has changed is my level of tolerance and self-restraint. Nowadays I (try to) act on any attraction only after making sure that my potential sexual partner understands what vulvodynia is, how it affects me and that some activities that make up what society terms “normal sex” may be permanently off the menu. Those of my partners who have stayed long enough and whom I count as my friends know that sex with me may entail holding me as I cry. A lot. It’s not sexy or fun but it is what it is —and I am lucky to have (and have had) very supportive and understanding partners and lovers. This has taught me to not set the bar low — these people really do exist.

As a person who reads and talks a lot about sex, I have read over and over about the importance of “enthusiastic consent”. But this concept, like many others that seem to be the cornerstone of the sex-positive community, gets very complicated with a condition like mine.

I want to have sex. I want to have orgasms and explore my body with other people. I want to open up to my partners and trust them to not hurt me or not run away at the first sign of trouble. But even now, even with long-term sexual partners, it is hard work. Maybe not every single time I have sex, but probably 90% of the time. It ALWAYS means me stepping out of my comfort zone if my genitals are involved in any way (and hell, I really want them to be). It’s opening myself up to activities with a high fail rate — and therefore likely to make me feel a mix of difficult emotions. It is doing my best to calm myself down and reassure myself that everything will be okay, even if the pain appears and we have to pause or stop. It is also telling myself that I am not unattractive because of my vulvodynia — because this fear makes me avoid any activities that remind my partners of its existence.

While in the past it wasn’t always the case, right now I am confident that any sexual activity I consent to I do for myself — I do it to feel pleasure, to give pleasure to people I care about, and to work on my fears. I don’t do it because I feel pressured or like I have no choice. Nevertheless, I cannot say my consent is enthusiastic and that makes me feel like this consent is somehow not valid in the eyes of others. Sex-positive people often implicitly (or even explicitly) send the message that consent that isn’t enthusiastic isn’t really consent and that sex with non-enthusiastic consent is either decidedly worse or a form of sexual assault. Once again, I am not trying to do away with this idea — I know exactly what the people who say it mean. They mean the sort of consent that I myself used to give when I was in pain but not yet aware of what was happening to me. When I think of non-enthusiastic consent, I think of all those times when I, like so many other women, gritted my teeth through things that were bearable but not enjoyable for me and reassured my partners that I was having the time of my life. I don’t even think I did it out of pressure though, I think it was an extremely bad coping mechanism which allowed me to at least pretend that I was normal. I think of it as me violating my own consent — something I learned from others, like that really hot guy I hooked up with once who started roughly fingering me (if you have vulvodynia, the pain is truly excruciating) and needed me to tell him to stop several times before he did.

But my consent now, while often not much more enthusiastic than in the examples above, feels completely different. It is me stepping out of my comfort zone and doing scary things for me — because I believe that it helps me in the long run and often leads to pleasure in the short run as well. I think it will take years for me before I can consent enthusiastically to someone touching my vulva or going down on me (anything else is painful and I avoid it to not reinforce my fears and to avoid deepening my condition). Should I therefore avoid every situation that is a challenge and makes me feel anxious or uncomfortable? At this point in my life I know the answer to that is a resounding “no”.

I think that general concepts, rules of thumb, and slogans are important and needed. But I wish there were room in the mainstream for more nuance. I feel that this stage only has place for women who are healthy (or whose health issues don’t have such a direct impact on their sex lives) and if any voice or article with a different perspective becomes viral and reaches the mainstream, it’s a cause for celebration. I mean Buzzfeed recently posting a small piece on vulvodynia caused a wave of enthusiasm on all the vulvodynia support groups I belong to — that’s how starved we are for our voices to be heard and for our condition to finally be recognised as common and serious.

I know I am not representative of the average vulvodynia sufferer — I’m queer, poly, and I am lucky to have my own little safe bubble of friends, partners and lovers who support me and have never made me feel ashamed of my condition. Many of us aren’t so lucky — there are stories out there of unsupportive friends, partners who cheat and guilt-trip us into sex we don’t enjoy, and parents and doctors — the people we should be able to trust — who don’t understand our condition and gaslight us. But thanks to my luck I am able to speak about my condition openly, while many others suffer in shameful silence. I hope this changes.

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