The Vagenda: TMI Special: Vulvodynia

Vulvodynia quite literally translates as 'broken vagina'. Don't worry if you've never heard of it, I hadn't either. There I was, having sex one day completely ﬁne, and the next ow ow ow fucking painful ow fucking hell ow.

Now as a 19 year old girl with a penchant for the overdramatics, and a horrible habit of consulting Dr Google, I was convinced I was going to die. Or, at the very least, never have sex again. So off I toddled to the sexual health clinic, and saw probably the least helpful nurse ever. She was judgemental, told me that the pain was probably because of the pill and normal, and threw pregnancy test number 1 at me. I'd been on the pill three years at this point and I knew this wasn't normal.

The pain in my vuvla was very shallow, it didn't hurt when a tampon was sitting inside of me, the main problem was with the entry; and it only hurt on one side. It was a sort of stabby pain, bit like if you'd stubbed your toe. But it was too painful for any sort of penetration, and this made me sad.

So I went to the doctor's and described the situation, explained that I'd already seen a useless nurse and I wasn't pregnant. The doctor told me the pain *might* be because of my pill but not to worry too much. Pregnancy test number 2 was also negative.

Back to the doctor's, really fucking annoyed this time because I just wanted some sweet luvin' with the nice bloke I'd just met, and was still in absolutely no way shape or form, pregnant. Pregnancy test number 3. Still not fucking pregnant. She did however refer me to a specialist, but it was going to take months on the NHS.

I went private. I love the NHS, I really do, but they'd been pretty fucking useless up until this point, and £150 to get my vagina sorted out seemed like a small price to pay in the grand scheme of things. Pregnancy test number 4. Still. Not. Fucking. Pregnant.

Luckily my new, private doctor was an absolute dream. Within 30 seconds of examination she'd said 'oh yes I can feel your muscles spasming'. Within 30 seconds she'd ended my two month ordeal.

She explained to me that sometimes, for no apparent reason, your nerve endings go all fucked up. It happens to quite a few women, there's nothing you can do to cause or prevent it. You could register pain from penetration, like I did, or in extreme cases from wearing underwear or tight ﬁtting clothes. It was treatable, though I'd have to be on a lot of tablets for the best part of a year. Women under 30 are usually given epilepsy tablets, women over 30 take depression tablets. There are side effects: you might feel a bit tired and no sex for 'a while'. But I was just happy to know what was wrong, and even happier that there was treatment.

I started on a relatively low dose of tablets, three times a day and told me to come back in a month. They weren't strong enough and I was still in pain, so I was moved up to a higher dose. They still weren't strong enough so eventually I was put on 300mg of Gabepentin, three times a day, for six months after the pain has stopped. I'm not great at organisation, so having to take the tablets at the same time every day was a bit of a mare at ﬁrst, but you need to make sure your body has a constant dose otherwise there's no point. I'd have to do self examinations every so often until I was pain free, which involved pressing down on the opening to my vagina and seeing if it hurt - a very scientiﬁc method.

And the best part of it all is, I shit you not, my doctor prescribed sex to me. She told me to go and have sex. That is a thing that I was prescribed.

Since Vuvlodynia is mostly unknown, it was fairly difﬁcult to explain what exactly was going on to people. The ﬁrst calls were the bloke and my mum, fairly easy. Then some close friends wanted to know why I was always at the doctors. Bit more embarrassing. Then my male housemates noticed and expressed concern, which was pushing it. But I had an epiphany. 'Fuck that', I thought. 'If nobody else is talking about Vuvlodyina I will. It's a medical condition that has absolutely nothing to do with my sexual preferences. Why am I so embarrassed to talk about my vagina?' So I am telling you, the internet, about my broken vagina.

Vulvodynia can come back at any time, that's just something I'm going to have to live with. And it'll come back worse. It can happen to anybody and it's not very well known even amongst doctors. If your vagina hurts (and not in the good way) or you know something isn't right don't take no for an answer, keep pushing. Even if you do have to do four pregnancy tests.

Such was Carrie’s response in season 4 of Sex and the City when Charlotte announced that she had been diagnosed with this condition. “It’s not serious, mostly just uncomfortable,” her on-screen doctor helpfully advised, “some anti-depressants should get it under control.”

Vulvodynia is a condition characterised by chronic burning or stinging pain in the vulva. Not always “just uncomfortable”, the pain varies between sufferers but can reach unbearable levels. The cause is unknown and there is no cure, although there are things that can help and some women do get better. A 2011 study showed that over 25% of women will experience ongoing vulvodynia symptoms at some point in their lives. It’s possible to have pain on contact (provoked), pain that’s not related to contact (unprovoked) or both.

As with all chronic pain conditions, research is sparse so getting treated is usually a case of trial and error. It’s true that anti-depressants are sometimes used – the idea is that, at low doses, they can disrupt the problematic and unnecessary pain signals. Anti-epileptics are used for the same reason. Other options are pelvic floor physiotherapy, topical anaesthetics and nerve blocks that aim to calm the possibly-inflamed pudendal nerve.

Of course you can only get treated, though, if you manage to get diagnosed in the first place. The study mentioned above found that 49% of patients with vulvodynia symptoms had sought treatment, but less than 2% had received a diagnosis.

Too many doctors are unfamiliar with vulvodynia and because there are usually no physical symptoms, it is all too easy for them to imply that you are making up or exaggerating the pain. Many sufferers have been told at least once that it’s all in our heads. This reluctance to take women’s medical complaints seriously seems to harken back to hysteria; that mythological condition ascribed to over-emotional women and their problematic wombs that was only dropped from psychiatric terminology in 1952. Trouble with your lady-parts? Don’t be silly love, you’re probably just overreacting!

At this point it’s important to note that the British Society for the Study of Vulval Diseases recognises that, although anxiety and depression often (unsurprisingly) accompany vulvodynia, “there is no evidence for a primarily psychological cause”.

I’ve had both provoked & unprovoked vulvodynia for 11 years now. It hurts if I sit for too long or do certain types of exercise, and penetrative sex is out of the question. Sometimes it hurts for no reason at all. Sometimes the pain is so bad I can’t do anything but lie in bed and cry. I have to see the bright side, though; most days I function pretty well and anti-epileptics usually keep the worst of the pain at bay.

Following my diagnosis and noting vulvodynia’s conspicuous lack of inclusion in what I can only mockingly call my sexual health education, I’ve had to cobble together most of what I know myself. There are a few excellent medical books covering the subject (I recommend “The V Book” for starters) and the vulval pain society is also an invaluable resource. An NHS webpage on vulvodynia even finally appeared last year.

On the odd occasion, and thankfully with increasing frequency, I have also seen mentions of vulvodynia cropping up in the media. However with a condition as complex and poorly understood as this, there are bound to be problems.

For example, I’ve seen a couple of pertinent articles in the true-life sections of women’s magazines. “My knickers felt like needles,” went That’s Life!’s headline, while Company went with “A mystery illness destroyed my sex life”. While it’s great that these articles are getting information out there, the need for emotional hooks and attention-grabbing quotes in such mags means that they can end up portraying vulvodynia as something that’s shocking and rare; a skewed view at best.

I was excited, then, to discover mention of vulvodynia in feminist author Naomi Wolf’s latest book, “Vagina”. Sadly, it was a disappointment. The relevant section is entitled “Vulvodynia and existential despair” and this cheery sentiment more or less sets the tone for the rest of the piece. By the end, I felt that my faulty genitalia and resultant lack of ability to receive a good rogering had Ms Wolf writing me off as a mere shell of a woman who couldn’t possibly achieve anything while blighted with vulval pain. Not exactly helpful for someone who has had no choice but to learn to live with it.

The best non-medical book that I’ve come across is “The Camera My Mother Gave Me,” a memoir by Susanna Kaysen (vulvodynia sufferer and author of “Girl, Interrupted”). In pithy, succinct quips she details her interactions with doctors, friends and a deeply unsympathetic boyfriend. It’s the book to read if you want to know what life with vulvodynia is really like.

Considering how common vulvodynia is, it’s shocking how few people know about it. I’ve come to realise that when it comes to women’s health problems, we can’t wait for doctors to figure out what’s wrong and how to help; we have to educate ourselves and our doctors, leading the way in our own healthcare.

So I hope that next time you see a mention of this “mysterious, needle-knickered illness” you’ll think “Aha! Vulvodynia – I know about that, and it's a fucking bitch.”