The Vagenda

TMI Special: Vulvodynia

Two of our writers open up (pun intended) about this painful condition
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. 
Surprisingly, I hadn’t had sex since my first test BECAUSE MY FUCKING VAGINA HURT TOO MUCH. 
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.
- AC
I know what you’re thinking; vulva-what-ia, right?
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.”
Except that, back in the real world, this is mostly bullshit. 
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.”
- ES

9 thoughts on “TMI Special: Vulvodynia

  1. Thank you Vagenda, I read this going ‘YES THAT’S ME, HELP’! I’ve only been having sex for a year, with my boyfriend, and still, every single time penetration hurts. It’s as if everything closes up. I went to see my doctor, had plenty of tests and she just said ‘You know, it’s probably just psychosexual. You may find it gets better with time, stick with it and relax!’ Relax?! This article reassured me I wasn’t making it up, that it wasn’t all in my head. I’m definitely ordering The V Book, and will probably try a different GP :)

  2. I’ve had this for nearly 4 years now. It’s amazing how long it took to get diagnosed but I ended up with a good NHS specialist after repeatedly going to my GP for thrush and cystitis treatments. I was on antidepressants for about 18 months, which really didn’t help, have tried acupuncture which is good is the short term but I’m not convinced in the long term, and am about to start anticonvulsants. I’m sure you can imagine after 4 years of itching, stinging and burning, how much I want this to work. I don’t really talk to anyone about it, as you guys say above too, only my mum and sister, and my (now ex) boyfriend, because I think friends just don’t want to know that kind of detail. Although I do realise that as soon as you start talking about it, you realise a lot of people are hiding it too.

  3. This makes me want to cry. Thank you, thank you for this. I’ve had vulva pain for about two years. My husband is very very understanding but I can’t help feeling guilty, like I’ve ruined our first year of marriage. Sometimes I feel like it’s all in my head. I was diagnosed with “pudendal nerve pain” by a specialist which I guess is vulvodynia? I’m on an anti-epilepsy drug that I take 3 times a day but I’m not very good at taking it on time so maybe that’s why it hasn’t made much difference. I’m so scared I won’t ever get better.

  4. Reading this has made me cry and cry. I am currently undergoing treatment for vulvodynia after a long and stressful period leading up to a diagnosis. Reading this has left me feeling utterly hopeless. Although the first writer says that she’s had some success with treatment it’s really soul destroying to read the second writer’s experience and have her say “Except that, back in the real world, this is mostly bullshit.”

    There is very little information available about this condition and when I saw that it was your TMI article this time I was so happy as I thought this is where I’ll get some useful information. Instead I’ve been left in despair by two really negative articles. All I can find elsewhere is more of the same. As some of the other comments say I’m terrified that this will never get better, that I’ll have this for the rest of my life.

    My specialist assures me that this can get better and she’s had patients that have responded to the medication. If she says this then they must be out there! Could you not have found one of them to counteract the negativity that seems to be all there is surrounding this condition. Who are these people who’ve been cured? Is the first writer one of them, she never confirms if she’s now pain free. Will I be one of them?

  5. Thank you SO MUCH for this article. I have been suffering from vulvodynia for about 4 years and have been to 5 hospitals, having everything from ultrasounds to horrific biopsies. I have tried about four types of pills (including the gabapentin mentioning in the article) and am now on pregabalin. Nothing seems to help and I am in total despair. After a while you just feel like giving up and no one seems to know anything, even the doctors. You feel like no one can help you end the pain. I really hope everyone posting here finds something that works for them soon and I’d love to get in touch with everyone if you need someone to talk to or compare notes with.

  6. I have vestibulodynia (I’m assuming this is a similar condition), which developed after I had thrush. I feel awful about it. At first, I also went to see a doctor who told me it was just the pill, and refused to consider it might be anything else. It’s not as bad as it used to be, when it was so painful I felt like I was being cut with a knife and I couldn’t do anything with my boyfriend, or then when it was so painful I cried every time we had sex, but I still get pain every time. I feel really shit about it because there’s hardly any research on it, but the research there is makes it sound as though it probably won’t ever go away. I wasn’t told that you could take any medication for it, I was just told there was nothing I could do. My doctor gave me some weird numbing gel to use before sex, but it was pretty useless. I did eventually go to a doctor who diagnosed me, but as there was still nothing they could do it didn’t help much. I just feel like it’s my fault somehow and it’s really frustrating that I’ll probably have to put up with it for the rest of my life.