My Struggle With Vulvodynia
I wrote this story both for myself and for all the other people out there that are affected by vulvodynia.
4 years ago, I had a bout of thrush.
Sounds fairly harmless, right? Thrush is pretty common among people with vaginas and usually goes away after a short period of treatment. Mine however became chronic and ended up haunting me on and off (but mostly on) for a year. It seemed to feel quite at home in my body and popped round for frequent visits. During that period in my life, I saw gynecologists more often than I saw my own friends as I went through most likely all the yeast infection treatments out there, tens of tests and a whole lot of patronizing.
A few months in I was exhausted and losing hope. I became paranoid and (if I wasn’t currently going through another bout of yeast infection) I would anxiously check myself for symptoms nearly every day. In my desperation I eliminated every possible cause of thrush I could think of, I even developed a fear of wearing less breathable underwear and of going to the pool.
Despite the persisting soreness, my tests eventually started coming in with negative results and after a while I had no other option but to accept what that meant — the pain I was feeling wasn’t due to any infection anymore. I couldn’t treat it with cream or pills or lifestyle changes. The little sense of control that I had left suddenly disappeared. I had no clue what I should do next, since my thrush seamlessly transitioned into something new and unfamiliar — vulvodynia.
I don’t want to get too deep into the medical details on vulvodynia (at the end of this story there is a list of links and resources for anyone who wishes to learn more) so in a nutshell: people with vulvodynia experience chronic vulvar pain, which can be either provoked (for instance by penetrative sex, inserting a tampon or even wearing underwear) or unprovoked — present even without anything touching the vulva.
Confused and scared, I resumed my gynecologist marathon, this time as a technically healthy woman inexplicably experiencing pain. I thought I’d seen the worst side of gynecologists when I was struggling with the thrush but boy, was I wrong…
Most doctors dismissed my pain — my vagina and vulva looked healthy and according to all the tests they could run it really was — so they assumed that I had to be making everything up or exaggerating it (you know, as women do). They’d roll their eyes, making their annoyance evident as they struggled to insert a speculum. The pain I felt caused me to tense up, but I gritted my teeth and tried not to writhe despite the agony I felt, while they shouted at me to relax (because shouting at people calms them down, obviously) as if I was intentionally trying to make their job more difficult. During those visits I often had tears in my eyes and left feeling sore and violated — all for nothing.
The other group of doctors did acknowledge my pain but the remedies they suggested ranged from strange and unhelpful all the way down to downright insulting. The less spectacularly bad advice usually boiled down to “use more lube” or “have you tried foreplay?” — things that most vulvodynia sufferers would probably have thought of. One of my personal “favorites” was the idea that getting pregnant and giving birth would somehow cure me. I don’t know what line of logic leads a doctor to advise a patient who cannot have penetrative sex and does not want children to get pregnant (through, uh, penetrative sex — how does that work?) and give birth aka push out a watermelon through their vagina when they can’t even insert a tiny tampon. But it must have been a popular line of thinking because I heard it often.
Another suggestion was to use desensitizing cream. I don’t mean to make anyone opting for that solution feel bad — it’s great if it works for you. But for me it felt like the end goal was not to help me get my pleasure and stop feeling pain but to literally enable me to bear having penetrative sex. The doctors giving me this advice saw this as a permanent solution because to them, the main victim of my vulvodynia was my partner and the goal was to allow him to have PIV sex with me. Whether or not I derived any pleasure from it was irrelevant — this became painfully clear when they asked if sex was “really that important to me”. Those doctors cared more about removing the restrictions placed on my partner than solving the actual problem.
According to some estimates, as much as 16% of women suffer from vulvodynia. I choose one of the highest estimates out there because I believe it might be a condition that is severely under-diagnosed — I myself never got an official diagnosis because in my country doctors seem largely unaware of conditions like vulvodynia or vaginismus. On top of that it is common for doctors to underestimate the reported pain levels of female patients, something that no doubt would affect diagnosing chronic pain conditions.
We still don’t know much about the condition itself — there is no consensus on its causes or treatment and the treatments available so far have varying success rates. This, combined with doctors’ ignorance on the issue can lead to a lot of frustration and feelings of hopelessness. I know it has for me.
I didn’t notice just how deeply ingrained into our culture PIV sex was until I lost the ability to have it. Nowadays we’re having more conversations about realistic portrayals of sex in porn and movies but in the end PIV sex is always there in the mainstream. In my experience healthy people take it for granted and there’s usually an underlying assumption that it’s the “main course”. Sure, people are coming round to seeing that there are other things out there but they belong to foreplay or kink. They’re just adding to that basic layer. Sometimes this basic layer isn’t PIV sex but it still involves touching genitals — something that can also be to painful for a person suffering from vulvodynia (on my worse days even gentle oral sex is off the table).
The fact that PIV sex is seen as such a basic element of sex in general often makes me feel inadequate and broken, and from what I’ve read and seen on forums I know this is not unusual. I feel like my inability to engage in all those activities makes me a bad sexual partner by default.
In the past, motivated both by guilt and hope, I became fixated on PIV sex and made numerous attempts to resume having it. But no amount of calmness, foreplay and lube seemed to do the trick and the attempts usually ended up with me sobbing on the bed, filled with shame and hatred for this body that couldn’t do one simple thing. In my mind, sex stopped being something beautiful and joyful and became an extremely difficult and often painful activity. As a result, my libido started to drastically fall. I began wondering if I was asexual (actually, I was wishing I was) and started subconsciously avoiding sex or creating very strict boundaries to lower my partners’ expectations from the start. I stopped searching for informed gynecologists or treatment ideas and simply gave up. I didn’t want to face the issue anymore, I wanted to bury it as deep as I could, destroy any hope that was left and just move on. And for a while, I thought I succeeded in doing just that.
But sooner or later, the things you bury start to catch up with you. I’m done pretending my vulvodynia doesn’t exist or doesn’t affect me and my sex life, I’m done burying it. Despite the fact that several years have passed (and in spite of having understanding, open-minded and supportive lovers), I continue to struggle with feelings of guilt and insecurity, as well as an overwhelming sense of loss. And I now see that silencing them just doesn’t work. So recently I began to open up and tell people about my condition — something that feels strangely liberating, a bit like a sexual dysfunction coming-out.
I don’t know if I’ll ever be able to have pleasurable penetrative sex again but I now see that there are other things, issues resulting from vulvodynia, that I can change. I have faith that one day I will once again feel comfortable and confident in my body and I will stop seeing my vulvodynia as an insurmountable obstacle that automatically makes sex with me bad and somehow lacking.
I believe that one of the keys to making this progress is allowing room for grief. Going to doctors or therapists, talking about my experiences and remaining hopeful (despite my fear of disappointment) is all important. But it’s also crucial to acknowledge the loss I feel, loss that is not imagined or exaggerated. I’ve lost not only the ability to have certain forms of sex, I’ve also lost confidence and the love for my body that I once had, my depression deepened and my libido fell — my vulvodynia changed me.
I am surrounded by sex positive people but I am often under the impression that sex positivity forgets to leave space for discussing very difficult situations and emotions without automatically trying to put a positive spin on them. Outside of forums about vulvodynia or intimate conversations with close friends, I feel there is no room for me to grieve all the things that this condition has taken away or somehow “spoilt” for me. This adds a layer of shame for me, as I am ashamed of my shame.
My hatred for the parts of my body that hurt and the issues I have with opening up to and trusting new sexual partners make me feel like I just don’t belong. I have days when I really don’t like myself, when I am scared of touching or being touched by people that I love and trust. There are days when any talk of sex, sex toys, porn — whatever — feels somehow triggering or exclusionary for me and makes me withdraw. But here’s the thing: vulvodynia complicates things and brings in a whole set of difficult emotions. I struggle but I am pretty sure that other people in my place would struggle as well. My success lies in the fact that I don’t want to withdraw or avoid the issue anymore, that I am ready to face it and I haven’t given up. And if you, dear reader, are struggling with vulvodynia too then know this — you are not broken. You are strong.