Living with vulvodynia and vaginismus
Written by Heidi
Content Warning: This article includes descriptions of painful penetration and suicidal ideation.
I was offered an opportunity to write for GINA a year ago now, but every time I sat down and tried to think of what I wanted to say, I drew blanks. I was too negative at first, too fatalistic, and resigned to a fate that I thought would be far too unappealing for readers, especially readers struggling with vulvodynia and vaginismus.
But after some reflections, I've realised that the 'negativity' is a very real part of this disorder, especially in a world that tells us as people with vaginas that our appeal is down to what our bodies can offer others.
I grew up with a conservative view of sex, as most sufferers of primary vaginismus and vulvodynia do. The conversations had by male figures in my life regarding the topic were over-sexualised, and made me feel dirty and gross for being a woman. I repressed (and therefore still subsequently suffer from the effects of doing so) my bisexuality, because of how sex between women was viewed by these same men, and of course because of the societal impact and emphasis on penetrative, heterosexual sex as being the One True Sex.
I never masturbated. I didn't know how. I had certainly touched myself and had been aware of 'funny feelings' down there. But it wasn't until I was around 17 years old that I remember being aware of what an orgasm was. I didn't know what it felt like when you had one, so I didn't know what to expect. The idea of 'fingering myself' made me want to cry.
Anatomical drawings, discussions of pregnancy, childbirth, pap smears, etc. — anything invasive in terms of procedures, would make me shake, want to cry, or feel nauseated. I still struggle with this. I developed what I can only describe as gynophobia. The vagina was this alien beast to me, so unsettling and gross, as much as my budding feminist brain wanted to think otherwise.
I was told losing your virginity hurt. That you would bleed. That it tore your hymen. I later learned these things weren't true, but the damage had been done — my body had internalised it. That, in addition to never having a relationship, and never exploring my body, all took its toll.
I was 18 when I was diagnosed with vaginismus, dyspareunia, and vulvodynia all at once. I didn't know the difference between the three at first and was overwhelmed by what felt and sometimes to this day still feels like a death sentence. And a lot of the time back then, it did. I was with my first and so far only boyfriend, who was very understanding of my condition, being the one to suggest that I see a doctor after our third try of penetrative sex — 'losing my virginity' — didn't succeed. He was supportive in that regard, but he was deeply fixated on sex and made it abundantly clear through subtle and not-so-subtle gestures that I was not adequate compared to the adult film stars he watched. I could never do what they did, I could never do what his exes did. I was a sex object, adopting fetishes and being essentially Pavloved into associating the brief interruptions to the emotional neglect of me with kindness. And that still was not enough.
I still remember the first time I felt that pain. I had felt it before, briefly, the first time I had tried to use a tampon, but this — it's indescribable to anyone who doesn't have a pelvic pain disorder. You're on fire from the waist down, but you're also being poked, prodded, and stabbed a thousand times by a million little needles. And with vaginismus especially, it doesn't even go anywhere — the barrier that is formed by your muscles, preventing entry, feels humiliating. I tried my best to relax, and I thought I was, but my anger over the situation only got worse, until I broke down. He tried to comfort me, but it was made abundantly clear throughout our entire relationship I was inadequate to him, and being my first relationship, truly affected me, and still does to this day.
I did physiotherapy for the next year. Stretching (but never managing to keep up with it), graduating to dilating. Numbing creams, breathing techniques, watching porn. Anything. Then, I got the news. I would have my first botox injection. The date kept getting pushed back; a classic of the public health system, and by that point I had endured a cruel breakup, dumped largely because my ex had wanted to sleep with other women, to have 'real sex', even though he pretended that wasn't the case, using my resulting mental breakdown a week into 'agreeing' to his ultimatum as an excuse. But after another half year, the day was there.
I was recovering from another injury at the time, so healing was hard, and it was very isolating. My initial surgery had entailed not just Botox into the pelvic wall, but a hymenal excision, and Fentons surgery, where the 'skin bridge' was cut and resewn to try to offer more room. I also received the Mirena. Comorbidity of pelvic pain is often painful bowel movements, which often results in skin tears, so unfortunately the scar tissue returned, but that initial surgery did wonders, and then I had my second, another year later.
I was told after two botox injections, a year apart, into my pelvic floor, that I no longer had vaginismus. However, it didn't feel good. I still had the pain, I still couldn't fit anything except a certain scale of my dilators inside of me, and even then it didn't feel pleasant, even when the pain subsided. Wasn't penetration meant to feel good? All it felt (and still feels) to me was as if an alien body was inside my own. It felt weird and wrong and deeply uncomfortable, and that made me upset.
Then I met him — no, this isn't a whirlwind romance story, but still a defining moment in my young life.
Despite everything, I still held onto hope that I could get better, that with enough physiotherapy, enough trying, and — unhealthily — enough forcing my body beyond what it was capable of, it would work. But one day, it just... Did. And ironically it was through a hook-up, not a boyfriend like younger me had always thought it would be, that I was able to achieve penetration — full penetration — for the first time. I had had hookups before, had attempted penetration, from either no success to moderate, probably not practicing safe sex as well as I knew I should have in the process, but this was the first time I really did it. 'Losing my virginity for the second time', I had joked: once, having any form of sex with another, and the second, having society's ideal version of sex.
I left with bruising, and a limp, the pain from it wreaking havoc on my muscles, but elated. I had done it, I had achieved it. It didn't matter how painful it was; he was tender and kind, always checking in on my consent, and with every wince, every flinch of pain, he would stop, check-in, lay down, take a break, and we would try again. My first boyfriend had done similar, but he had not respected me, and it was evident. It was sadly ironic, to be treated nicer by someone who I was not even dating.
Presently, the pain is less. It's less with every time I try. Certain angles are a no-go, too little lube brings back that all too familiar burning and I do have to focus on other things when that initial sting, that toe-curling, stomach-churning stabbing kicks in, but it's fine. Once again, it doesn't... Feel like anything, not good, or bad. But knowing this is what three years of physiotherapy has given me, a severe case, has been amazing.
I am still at times negative about having vulvodynia — how can I not be? Dating scares me, the potential of a partner who is too well-endowed seems to be a problem only I seem to care about in a world where that's seen as a good thing, and I get nervous every time I have to explain to someone what's going on. I need anaesthetic when I have deep examinations when I have the Mirena inserted, and when I will have it removed, and I still feel that alienation from my peers. But I am so monumentally proud of myself because this condition very much contributed to the suicidal ideation that I struggled with after my breakup. When people told me that one day there would be a light at the end of the tunnel, I begrudgingly chose to believe them, believing in a world with so much emphasis on penetrative sex, that I was, and always would be, an outcast, a social pariah, but they were right — there is a light. It can feel far away, but it's there.
Sex should never be painful, and hearing so many people tell me they genuinely assumed it just was, and that it had to be, always breaks my heart. But I'm proud of myself for how much I struggled alone with these conditions, and I truly hope we can change the tide around conversations of sexual pain, in a world where that is so often swept under the rug.
Vagina dentata was about vaginismus.
Heidi is a 21-year-old artist and tattoo apprentice living in Nipaluna (Hobart) who was diagnosed with vulvodynia and vaginismus at 18. She is passionate about history, music, and sharing her experience as someone with pelvic pain.
If you find yourself needing to talk to someone after reading this story, please call Lifeline on 13 11 14.
