Pink is the Colour of Pain – The years of living with Vulvodynia, by Sofia Capel

In my 25th year I was diagnosed with a chronic pain condition located in my vulva and vagina. The following are extracts from my unpublished mini-memoir.


“Oh girls, we have to raise our voices to be heard.” – Margareta Garpe, 1971


When the sperm that once shot up in my mum’s vagina slid down her leg again it was no longer just a sperm, it was me, complete with curly black hair, nails and little baby toes. The toes, regardless of their miniscule size, weren’t the most interesting part of me. It was the part between my legs, the area that was still without hair and exposed the little pink lips that came to determine my fate. This baby was a girl and like most girls I had a vagina. And everything with that vagina was fine until one day it started to hurt and no one could tell me why.

I should begin by telling you that I don’t think of my every limb or orifice as an individual. I don’t have cute names for my elbows, I don’t secretly hate my spleen. Most parts merely function the way they should: As extensions to my body. My vagina, however, seems to have a life of her own. Just like an individual she has good days and bad days. She has preferences and opinions of what I wear. In a way, it’s like living with a grumpy aunt.

It has a name, this condition of mine: Vulvodynia. Rolls nicely off the tongue, doesn’t it? To me it sounds like bouncing on velvet cushions (“dyna” meaning “cushion” in my native language). It should have a name more similar to “acid in my pants”. I hope to see the day they change its name, mostly because “Vulvodynia” means “vulvar pain” in Latin. Thus, once you get your diagnosis your doctor merely repeats what you have told them. “My vagina hurts,” you say. “Aha!” The doctor replies. “A typical case of ‘Your knickers are on fire’!”

But what’s in a name if the name cannot do more than telling you something you already know?

There are no set cures to my condition, my vagina expert tells me shortly after giving me my diagnosis. But there is a pill, a “nasty” little pill that they reluctantly give out to women like me. This pill causes dry mouths, nausea, constipation and dizziness. It is also very unlikely that it will help me long-term. I say I’ll pass.

“Have you heard of Vulvodynia before?” she asks. I have. In ‘unfortunate fates’ sections of women’s magazines, in the nightmarish ‘my story’ articles of isolation, disability and loneliness. I hold back the tears and ask her how long she thinks I will have this disease. A few months, she recons. Maybe for a couple of years. “Some women have it for the rest of their lives,” she whispers. She hands me some local anaesthetic and adds that if I meet a ‘nice man’ I should soak a cotton ball in it and put between my labia for two hours before any hanky panky. As soon as I get home I chuck it away together with any last hope of romance.

After a summer of unexplained agony I have finally been told: ‘There’s nothing we can do. Computer says no.’ This is where my vagina and I form a new sort of relationship. We detest each other at this point, but we realise that we are bound by blood and bones and therefore have to work on a way to live with each other.

*

Maybe my life was a bit too perfect. Perhaps I was too happy. Enough about my vagina, let me tell you a bit about myself. At 25 I was high above the clouds. I had bounced back from a dark depression that had hit me two years prior and I felt un-religiously reborn with great expectations of life. That spring was all about beautiful meals with beautiful friends, trotting around in pretty dresses, writing poetry, kissing young men in dirty East London bars and dancing all night at house parties. I was a columnist for a monthly fashion magazine and earned a living by freelancing as a photographer. In my own mind I was Carrie Bradshaw and Edie Sedgwick with the confidence of Kanye West on coke. Thoughts of serious relationships, marriage and children were all beyond the horizon. They were things I took for granted would happen eventually anyway.

On a midsummer night I fell into bed with a causal lover, woke up the next morning and felt ‘torn’ down there. I blamed it on my dehydration after drinking for 12 hours in the sun, as well as our incompatible genitalia. He bought me breakfast at my favourite restaurant and took the tube home, I went to the fruit and veg stand and got artichokes and garlic. I ate it on the balcony while leafing through a Tatler. Later I had the leftovers from the day before; smoked salmon, skagenröra and caviar. By bedtime I still felt as if my vagina had cracked, but I shrugged it off. I was 25 and living with the idea that no pain lasts forever.

*

During my forth visit to St Thomas Hospital’s sexual health Clinic that summer I’m given yet another white tube with words in Latin written on it. During the first visit they detected “a quite aggressive bit of thrush” and handed me a cream over the white desk. At my second visit, one month later, they told me that the inside looked “raw” and that they better forward me for a smear test. I was then also given a cream, my third one. The third visit was not quite as painful, but still enough for me to scream when the nurse inserted the plastic tube in me. They found no thrush, but I was still given an anti-thrush cream that I was told to apply daily. I had been tested for every STI in the book and the tests had all come back clear. I consulted with nurses and pharmacists, was it dangerous to apply so much cream for so long? “No, by all means, have some more.” Weeks later I will google these creams and discover that they in themselves can cause vulvodynia.

Once it is determined that I no longer have any thrush my gynecologist explains to me that vaginas store pain and recycle it. They are not like arms or legs that can get punched and kicked and still be fine once the bruises have settled. But most people do not know this, and for that reason women in general can be pretty tough on their bits.

The words echo in my head all the way home. Like when you dwell in the aftermath of a break up from an old friend or a lover, and slowly start to realise where you went wrong, that is how I come to terms with my sudden pain. Had I always treated my vagina with the love and respect she deserved? Or had I in fact put her needs and wants last in order to please others?

When I leave the clinic for the last time I feel furious, let down and in loss of hope. I feel violated. Simultaneously I feel as if I’m the one to blame. I start to remember moments of abuse that I have put my vagina through. The skinny jeans in year 9, occasional accidental cutting that came with shaving, the scented pads and toilet paper, the sex that I have put up with although it was painful. My bits never once forgot about the trauma. Vaginas are grudgy little buggers, like cats. I guess that’s why we call them ‘pussy’.

*

I give the Western doctors the finger and decide to try acupuncture. I read somewhere that it can do miracles. I imagine the needles going in and taking the pain with them as they withdraw from my body. But nothing of the likes happens. I have travelled for over an hour when I arrive in small town in the county of Kent. I imagined cute little countryside houses and jolly English people, but I am faced with beggars and Pound shops. Doctor Julie shows me the way and soon I am lying in my underwear on the bunk, ready to get penetrated by twenty-something needles. It will be the first kind of penetration in a while.

Her Chinese accent is thick and I nod and hum as I pretend to understand the words that are coming out of her mouth.

“The needle makes you blood saculation more betta,” she says and I smile politely. She asks me about my knees. Yes, they ache sometimes. She asks me about my lower back. Yes, it’s achy too. “It is all link togetha'” she says.  

The session involves needles, cupping and massage. I can hardly feel the needles while the massage and cupping make me scream right out. After two hours on the bunk I’m getting dressed again. My head feels light and although Doctor Julie has spent the afternoon beating me up I feel more at ease. But on the train home my bottom bits throb and ache so badly I can hardly sit.

*

How do I explain the degree of my pain, when it’s both physical and psychological? If I could take my pain and place it in you for a moment you would probably shrug, say you’ve felt worse. It’s nothing like childbirth or a kick in the balls. It’s harmless most of the time. Imagine having a big bruise on your bottom and feel it every time you sit down. Or imagine feeling sore after a night’s love making.

It may sting, it may bolt, it may ache. The pain takes different shapes and forms each day. But mostly it’s not the kind of pain that makes you scream or cry. It’s just bearable. The problem is that it is always present. And you know it won’t go away tomorrow, or the day after that. It will rest for a few hours occasionally — only enough for you not to get used the pain, only so it can come back and haunt you just when you think you’re safe.

Pain is never just that. It’s a reminder that something within your body is not working, a sign of weakness, the detail that ruins a perfect day. Unexplainable pain is never just pain. It’s a ticking clock, a message your body sends out to tell you that something is wrong. It’s a broken pipe that will soon lead to water damage. No one knows why it’s there, so no one knows what it can do.

“It could be a damaged nerve,” one of my GPs says one afternoon. It could be a lot of things. Each doctor or gynaecologist has their own theory. The ones that know what Vulvodynia means, that is. I visit the NHS’s website to see what they have to say about my condition. It turns out it is not even listed. That explains a lot. How could there possibly be a cure to a condition that is not even recognised by most people? And how is it possible that such a small number of people know about it when the world must be overflowing with red and irritated lady bits? Could it be that vaginas are so foreign to doctors because most of them are male and always have been? I turn to the oracle that is Google for answers.

“Most women don’t talk about this embarrassing condition, and if they do they are often dismissed”.

Oh girls, you need to raise your voices to be heard!

*

After living with the pain for over six months it is starting to get me down. Not only am I doomed to live in pain for all eternity; my condition has also stripped me of my sexuality. That autumn I fall in love. It is not a Sunday kind of love that slowly grows out of a friendship. It is not a whirlwind that tosses me up in the air and spins me around as I fly. It is real and hard, like being struck in the face with a fucking baseball bat. He’s six or five times out of my league, I reckon, so when he kisses me on the dance floor I start to think that miracles can happen, they just don’t happen to my vagina, when I need them to. That autumn, not only my vagina but my whole body aches, throbs and burns. When we stand next to each other at art exhibitions, staring at paintings. When we sit across each other at some South London wine bar. When we lie next to each other in the dark and he says he really wants to fuck and I reply with silence. All this time I’m burning. I never get to show him how much I love and want him. And when winter comes, he disappears.

Suddenly things lose their meaning. The things I used to love, like going out dancing and going to parties, seem pointless. What is the use now? If I meet someone I like it will only lead to complications and awkward moments. It will lead to having to say the words no one wants to hear or utter: “This is as much fun we are going to have. I can’t have sex.”

I start to realise how big of a part vaginal penetration plays in my life, although I have never been one of those promiscuous, sex crazed people you read about in magazines. The unprovoked pain is annoying more than anything, but I can live with pain. It is the fact that I can’t have what we call “normal” sex and what it does to me as a human being. I start to feel useless as a woman. I start to question my self-worth, why anyone would ever be interested in a woman they can’t fuck. These thoughts have never crossed my mind before. I start to think of myself as an object, one that is out of order. I begin to realise that things I have earlier taken for granted, such as a family, may be out of the question. My whole life suddenly centers around my cunt.

*

In May, something happens. I have had Vulvodynia for nearly a year when the pain suddenly goes on holiday. It does come back, though, eventually. But it’s milder; not as aggressive. My Doctor Julie is excited. “You my longest patient. But you will be cured too,” she explains. After my sixth month in acupuncture Doctor Julie has started to come to terms with my Vulvodynia for real. She’s like a psychic the way she can tell me in forehand how I’m going to feel the coming week. “This week,” she says, “Paaaaine” – she articulates the word as if she’s Edgar Allan Poe, with her eyes open wide. The next week I come back and when we are finished she says: “This week, gooood.” And she is right. Doctor Julie has become something of a friend during my sessions. Parts of it feel like therapy. She gossips a lot about former name-less patients. My favourite story is the woman who was engaged to a man for two years, but because of her Vulvodynia they were unable to have sex. “And of course, you can’t marry if you can’t…” Doctor Julie slaps the back of her hand in her other palm and exclaims: “Together!” That is how she pronounces “sex”: SLAP, together. “But then she sees me for a few month and the Vulvodynia is gone. So they can finally get married! But then I meet her one year after they married…” Doctor Julie stands back from my body for a moment and gesticulates dramatically: “Divorced!”

It turned out that the lack of sex was not their initial problem. There are some things that acupuncture just can’t cure.

During the summer the problem comes and goes. The pain has changed and is now mainly irritation. The irritation almost makes me miss the pain. Every morning when I wake up my downstairs area feels sand paper dry. My vagina, once a wet meadow is now the centre of the Sahara. I try lubricant but it just stings.

I spend two weeks in the Finnish archipelago with my family. I never go swimming although our house is on a cliff by the sea. I wear baggy tracksuit bottoms and no underwear, still my vagina makes itself reminded everywhere I go. This is the first summer in ages where I have not had a fling. I keep myself away from men; I focus on my writing and on my internships. When I come back to London I return to my Doctor Julie. I tell her about the problematic holiday. She says that it is because I’ve been away from her for too long that my vagina is acting up. I start acupuncture again and after two weeks I feel much better down there.

*

One night a girl at the new web magazine I write for asks me if I fancy coming along for a drink. I accept the offer, get dressed and jump on the tube to the other end of town. When I arrive at the gaudy bar I order an expensive glass of white wine. I text my friend to see where she is. It turns out that my company is at a different bar with the same name, in a different part of London. We both laugh at the mistake and I decide to stick around since I have already paid for my drink. I hit the garden to smoke a cigarette. It is fairly crowded, but in the corner I see a man standing by himself. I approach him and strike up a conversation. He asks me about my book and it turns out we have the same favourite authors. We stay chatting until the small hours before I jump on the tube back to Kentish Town. One week later we meet up again, this time on purpose. He tells me he has a serious partner and after a few drinks he tells me he wishes he met me at a time when he was still single. I blush as he talks about how great I am. Before the pub closes I lose him in the crowd and I realise that I have to run to make my last train.

The next morning when I wake up I am no longer dry. I suspect my new friend has something to do with it. But he goes back to his better half and I never see him again.

Soon after I meet a new guy in a cocktail bar. He’s unintelligent, rude and boring and I hate everything about him. I still sort of fancy him, though, so it is only a matter of time until I’m in his house, drinking his red wine. I have been living in celibacy for over a year and a half. But right there and then I decide to go for it. We go in to his bedroom to listen to some jazz. I put my glass down and let him kiss me gently. Then I push him down on his bed and sit on him. I tear off my dress and I can almost sense panic in his eyes. So I lay down next to him and ask if he is alright. He says he is just a bit nervous. And before he goes to get a condom I tell him straight: “I may not be able to have sex. But I wanna try.” So we try and the moment he enters me it all comes back: The feeling of lust, the intimacy, the warm and tingling sensation that runs from my centre part out to my every limb.

*

I share the good news with my fellow sufferers on the British Vulvodynia Forum as soon as I get home. I read the other threads about hopelessness and break ups, operations and creams, crying, suffering and pain. And although I am happy, I am still sad for all of these women. The mothers and daughters, the wives and single girls who live every day with this pain. Who have to listen to nurses who tell them it is all in their head, to male doctors who say things like “the female anatomy is a mystery”. I feel sorry for women who get told to apply more steroids, more creams of corrosive effect on their genitals.

But in the darkness there is also light. I read in one of the threads that Vulvodynia is now a listed condition on the NHS website. More people are coming out to talk about their problems openly. Perhaps the vagina is not as much of a taboo as it once was. When I advertised that I was writing an article about the condition, a whole lot of women stepped up and offered me an interview. Not one even asked to be anonymous.

I feel grateful towards my sisters. They have been there for me when I needed to talk to someone who understood. They, together with my Chinese doctor, have made these 18 months of pain less miserable. They helped me through it. No goddesses or queens, only women.

*

Back in Kent my Doctor Julie comments on the fact that I look smiley. “Hmm,” I say. I have been seeing her weekly for nearly a year. The practice has become like a second home. I know every jack in her Chinese slow songs CD. But I have not managed to fall in love with the town and I will not mind it seeing the back of me. I think my doctor can tell that I won’t be needing her services for much longer, because she asks me if I’m coming back rather than when.

“I’m not sure I need it anymore,” I say. She raises her left eyebrow. “You know,” I say, “I’m seeing someone now.” She stops what she is doing and whispers under her breath: “And have you..?”

I slap the back of my hand in my palm and exclaim: “Together!”

*

Your body is your greatest doctor. My GP once told me that. When creams and pills and needles won’t work, your body is still there, still fighting in your corner with the aim to heal itself.

I am still healing.


Read the rest of the Feminism Series here.


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