For about seven years now, I have lived with a dirty secret. When it first came to my attention aged 17, I kept it to myself, letting it rot inside me and making me feel utterly freakish and disgusting. By age 19, it was beginning to affect my work and relationships; that’s when I started volunteering the fact that I had chronic pain. When asked the obvious follow-up question (‘where?’), I would lie about its location. ‘Oh, my back,’ I would answer. I soon realised that my lies were serving no one, and might diminish the credibility of my story if I was found to have fibbed about my pain’s location. Plus, ‘my back’ simply did not do justice to the spiritual onslaught I was enduring. So, at age 20, I began opening up about the real site of my chronic pain. I toyed with synonyms and politesses, but it really all boiled down to one locus: my vagina.*
Yes. My name is Rosalind, and I have chronic pain in my vagina.
*Please note, a more anatomically-correct rendering of my pain would use the word ‘vulva’ rather than ‘vagina’, and I have been diagnosed (ha! more on that later) with ‘vulvodynia.’ On this blog, I use the words ‘vagina’ and ‘vulva’ interchangeably, for several reasons: mainly as a matter of lexical preference, conscious of the fact that the word ‘vulva’ can make readers even more squeamish than its more often-heard counterpart; but also to reflect the ephemeral and shifting nature of the pain I experience. My blog, my rules, k?
On this blog, I finally want to write more freely about this issue, without squeamishness or fear of being ‘found out.’ This is for a plethora of reasons; not least because nearly 1 in 10 women will experience pelvic pain at some point in their lives, and for some of us, this pain, once present, refuses to go away.
I’ve tried many different treatments with varying successes, and am currently trying to find balance between striving for healing and making peace with my newfound status as a member of the disabled community. (Yes, you can be ‘disabled’ and not in a wheelchair; if the condition/s you suffer from affect your day-to-day life, mobility, concentration and stamina over a long period of time, you are perfectly within your rights to call yourself disabled – indeed, you may find it beneficial). I aim to share some highlights and low points with you over the coming months, but that’s not my focus for today.
So why am I writing today, you ask? I’m writing because, in the last month, virtual behemoth Buzzfeed has posted not one, but two videos about women with chronic pelvic pain. Just imagine, for a second, how revolutionary this must seem to me: a young woman who has dealt with this pain for just over a third of her life, feeling grotesque, unforgivably unlucky, unspeakably lonely; fighting for recognition and every minute of treatment; enduring the accusations of ‘Drama Queen,’ ‘Weakling,’ ‘Overly Sensitive’ – and suddenly these issues are starting to be discussed on mainstream platforms?! Perhaps you can see why I feel this is such a watershed moment!
The first Buzzfeed video was about dealing with sex with this condition (VVS, a type of vulvodynia), focusing on the story of a very courageous young woman called Becky. The other had a more ‘clickbait-y’ title than the first: ‘I Had Botox In My Vagina.’ Cue hundreds of thousands of subscribers opening the video to see just how vain a woman has to be to want a wrinkle-free snatch. But no: within minutes, viewers were aghast to learn that Botox can be used as a medical procedure to combat chronic vaginal pain, especially for vaginismus, a condition which causes vulval muscles to spasm uncontrollably, rendering penetration physically impossible.
The recipient of this magical cure was a lady named Lara Parker. I was aware of her creative output before this video, as I spend a disproportionate number of hours regularly surfing the Internet, looking for fellow chronic-pain sufferers who have blogs and journeys of their own. Chronic pain, especially invisible illness, can be an intensely lonely existence, and I’ve found the Internet is always able to make me feel less alone.
That being said, the Internet can also be fertile ground for nurturing a veritable abundance of twattery; yea, a cornucopia of fuckwits. My sensibility being what it is (1 part positive pixie-child: 2 parts myopic pensioner), after watching Lara’s video, I scrolled down to survey the comments with interest. I suppose I was expecting the usual vitriol towards women voicing their experiences of suffering; or indeed, voicing anything in general. Naturally, I was not disappointed.
Reading these sorts of comments does vex me, I cannot deny it. Every time I hear someone claim that my fellow sufferers and I have a low pain threshold, I instinctively hope they themselves do not have one, simply so that if I ever get to punch them, it will achieve maximum effect. I feel the ghostly hand of Emmeline Pankhurst on my shoulder, reminding me that women have always been underestimated and believed to be nothing but womb-wandering sacks of histrionics, ineligible to vote, be educated, or indeed much else other than to cook and pop out babies like some heritage-security-vending-machine.
However, to focus on these comments – be they ever so predictable – would be to underplay the amount of positive feedback present. I felt genuine surprise to see a wealth of compassion and humble confessions of previous ignorance.
This has certainly reignited my desire to speak up for the real women living with these quality-of-life-destroying, and heinously-misunderstood, conditions. The education we are so desperately missing concerning pelvic health is leading to intolerance in the workplace and online. This has the knock-on effect of raising a whole host of women who think their bodies are anomalies, and that their vaginas are declaring some sort of rogue civil war against their persons.
As such, seeing statements such as ‘I will never take my regular muscles for granted’ is so unbelievably heartwarming (whether it was meant sincerely or otherwise). Not only should the information be there for the women who need it, it should also be available for the general public, so they can grow in compassion and gratitude for their own good fortune. I have been fortunate to have some very gentle and understanding friends and partners, but not everyone is so lucky. (For further details, see The Camera My Mother Gave Me by Susanna Kaysen). Vulvodynia, VVS, endometriosis and all these related pelvic pain conditions require a great deal from those suffering and those close to them: patience, resilience, relentless compassion – and, ideally, humour. That’s why when I saw this last comment on the video, ‘I Had Botox In My Vagina,’ I couldn’t help but smile:
Well played, sir; well played.
Post Script: Like Lara, I have also had Botox in my vagina – twice. Though it was thrilling to see Lara reap the benefits so swiftly, Botox was sadly not so effective for me. Vaginal dilators, on the other hand, such as the ones Lara shows us in the video, have proved a life-changing investment. But more on that another day!