Vaginismus: I Was Passed From Doctor To Doctor Before Being Diagnosed

Like many juicy stories, this one starts with a hook-up. I was very, very drunk and had gone back to a guy’s house. When he tried to put his penis inside me, it was like my vagina had sealed over. That night I blamed it on the booze but then it kept happening. By the time I ended up in a new relationship a few months later, my vagina hurt whenever I tried to have penetrative sex. It wasn’t like the pain you get from scratches or irritation. It was this horrible burning, like I was forcing open a wound or being stabbed by glass from inside. Penetration became about as pleasurable for me as pressing my hand on a hot hob and trying to hold it there for as long as possible. I’d dread even trying. 
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What I was experiencing was vaginismus, although I wouldn’t find this out until over a year later. It’s a psychosexual condition caused by the body’s automatic reaction to the fear of penetration. Something in your brain triggers your vaginal muscles to tighten, sometimes to the point where you can’t even see the hole anymore. There are two types of vaginismus: primary, where you have the condition before you even start having sex, and secondary, where something triggers it later in life – a painful infection or a sexual assault

Penetration became about as pleasurable for me as pressing my hand on a hot hob and trying to hold it there for as long as possible. I'd dread even trying. 

I went to get checked out at the GP pretty soon after the burning started. I expected to come away with antibiotics and an awkward phone call to make. No big deal. The sex education I received at school had pretty much solely consisted of getting shown scaremongering pictures of STI-riddled genitals. No one had told me that women can have pain during sex for a vast number of other reasons. I had no idea that vaginismus even existed. 
In the weeks and months that followed, I was passed from doctor to doctor. The results of each visit were nearly always the same: a muddle of puzzled looks and mentions of "nothing physically wrong". Being forced to tell my story to so many people who didn’t seem to have answers made me feel increasing shame about the condition – like it was my fault or I was making it up. Especially because, every time I visited the doctor, I’d be given a chlamydia test. I’d just sit there like, I can’t even have sex let alone catch an STI. Don’t you believe me? 
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All of this made me question my reality. Did I really have a problem? Was it my own fault? Was I just being difficult? Should I just put up with it? I started to feel very alone and like I was never going to be fixed. 
My breaking point came when I saw a gynaecologist who wouldn’t use the scientific words for genitals – he referred to the urethra as the "pee pee hole" – and couldn’t seem to understand why not being able to have sex would be a major problem for me. I broke down in tears of frustration in his office and he just said: "Why are you crying?" 
The problem with vaginismus is that the longer it’s left untreated, the more it fucks you up – both physically and mentally. Physically, you end up in this cycle where you anticipate the pain more and more and so your muscles tighten and tighten, which makes sex impossible. Mentally, fear of sex starts to seep into other parts of your life. I’d sit down to watch a movie with my boyfriend and all I’d be thinking was, Would this lead to us trying to have sex? Would I have to face the pain? Would I have to face the guilt of not trying and being a letdown? 
I became obsessed with finding an answer. Not being believed by supposed experts sent me down a rabbit hole of self-diagnosis. I’d spend hours every night scouring sex pain Facebook groups, scientific papers and forums, trying to find out what could be causing my problem. Could it be recurring thrush? Allergies? Interstitial cystitis? Vague 'inflammation'? I started to spend more than £100 per month on products the internet said might help: vaginal moisturisers and hydrating menopause supplements, probiotics, these D-mannose supplements which are supposed to help with interstitial cystitis, latex-free condoms, silicone-free lube, bleach-free organic tampons. I stopped drinking and became obsessed with healthy eating
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My breaking point came when I saw a gynaecologist who wouldn't use the scientific words for genitals – he referred to the urethra as the 'pee pee hole'.

Looking back now, I was obviously seriously unwell. My behaviour had a manic, Winona Ryder in Stranger Things energy to it. Meanwhile my lovely new relationship quickly withered. I was angry all the time and totally unaffectionate for fear that it might lead to penetration. We went on holiday for my birthday and I snapped at my boyfriend for trying to have sex with me, then ended up in tears because I felt like such a letdown. 
It’s funny because I feel absolutely no embarrassment now, writing about the physical symptoms of vaginismus. But telling you about how it impacted me mentally brings back all the feelings of shame the condition caused. As a health condition it’s intrinsically linked to the way society treats women. The stigma of being seen as 'frigid'. The prejudice you face when you demand a professional take your sexual pleasure seriously. The fact that showing any emotion makes you seem hysterical. I remember joking to my boyfriend that it was like I’d been cursed.
My story has a happy ending though. In an act of desperation I went to a sexual health clinic for an STI test, hoping that the chlamydia tests had got it wrong all along and actually I did just need a run of antibiotics. The medical student assisting the doctor I saw happened to be doing a research paper on vaginismus and said she thought I might have it. 
I ordered a set of dilators online. (The ones I've got are '80s-looking, beige plastic dildos in sizes ranging from 'tampon' to 'average penis' which you try to put in your vagina to train your muscles to relax.) My boyfriend and I broke up and suddenly the pressure I was putting on myself to get better dissipated. I could just focus on me and get better at my own pace. I started to talk a lot with a therapist about what might have broken my relationship with sex. A year later I saw a consultant who recommended vaginal massage and that helped, too. 
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I feel no embarrassment now, writing about the physical symptoms of vaginismus. But telling you about how it impacted me mentally brings back all the feelings of shame the condition caused. As a health condition it's intrinsically linked to the way society treats women.

The biggest help, though, has been talking to other sufferers. I’ve discovered that vaginismus is incredibly common and treatable but, sadly, that lots of people have had far worse experiences than me when trying to get help. Even some of my friends have had it – one told me that she’d been advised to "get drunk so she could try and have sex". Over the past year I’ve talked to tens of women who have similar stories: it’s taken them a decade to get diagnosed. The doctor gave them diazepam to calm them down (and essentially knock them out) before sex. They were told things like "some women just can’t have sex" or "it’s supposed to hurt" or "you’ll grow out of it"’. 
It’s both comforting and troubling to hear these stories. It’s nice to feel like you aren’t alone but it also begs the question: if vaginismus is so common, why isn’t it more talked about or researched? That’s why I’ve written this piece: not because I feel like my experiences are weird or special but because they are shockingly normal. Vaginismus is a condition which overwhelms you with feelings of shame and isolation, which begs you to keep it secret. Writing this is evidence to myself and anyone reading that it’s not something you need to hide. The more of us who speak up, the less it can be ignored. 

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