Vestibulodynia? I’d Never Heard of it Either

If you don’t know how to pronounce Vestibulodynia, let alone have any idea what it is, don’t worry – for a long time, I didn’t either.

You may have heard of another term – Vulvodynia – though you’re probably not sure what that means either. This is the term given to generalised, unidentified pain in the vulva. Women are often diagnosed with Vulvodynia when their doctor is unsure of why they are in pain.

There are also scenarios – which I have personally experienced – where doctors don’t offer any diagnosis at all, and instead see pain in the vulva as something psychological.

When this happened to me, I was told to go and see a Psychosexual Counsellor to deal with the pain I experienced during sex. But I was so confused – if I’m physically in pain, how is this going to help me? I did my best to go to my appointment with an open mind, as no other doctor could seem to give me any further insight.

It was suggested that I had Vaginismus – a condition that causes the vaginal muscles to tighten involuntarily during penetration, or even when inserting a tampon. The idea behind attending counselling to deal with vaginismus was that I could talk about any mental worries to do with sex, practice mindfulness, and hopefully then feel more relaxed so my ‘involuntary tightness’ would fade away.

I remained convinced, however, that my pain was very much physical and I felt sure that I just hadn’t found the correct diagnosis yet. I was trying to be as open minded as possible, in the hope that I could ‘talk’ my way out of the last 8 years of pain, but after 10 Psychosexual Counselling sessions I decided that it wasn’t for me.

My counsellor was a wonderful and empathetic man, but I really couldn’t shift my belief that I did not, in fact, have some deep-rooted traumatic issue that I related to sex. My search for help continued.

Endometriosis, irritable bowel syndrome (IBS), severe period pain, internal cysts – I was scanned and tested for so many things. It was a long, arduous, frustrating process with which I know many other women can identify. I’ve spoken to women who felt they were being ‘passed around the system’, as well as others who felt as though they’d been completely given up on.

I’d done a huge amount of research on my own about what I was experiencing, but after a while I realised that I hadn’t actually researched individual professionals working in the field of vulval pain.

I finally booked an appointment with a well-researched specialist, who confirmed within 15 minutes of talking to me that I had Vestibulodynia – a condition that causes severe pain around the vestibule, the entrance of the vagina. This pain can occur from vaginal entry such as intercourse or using a tampon – which is how I was affected, but some women experience pain purely from pressure around the area, such as from wearing tight fitting clothes, or riding a bike. My heart truly goes out to any woman experiencing this.  

The symptoms and the level of pain vary greatly amongst sufferers, and as there seem to be so many varieties, I can understand why it can be hard for medical professionals to diagnose the condition. There’s a difference between provoked and unprovoked Vestibulodynia, for example, which means that the pain can occur with or without touch. Some women physically tear during sex, while others have red irritated skin.

The experience that all women suffering from the condition seem to share is the burning sensation, likened to being cut with a razor or having acid poured on the skin. I am amazed, and horrified, that so many women have to experience this level and intensity of pain and yet the rate of diagnosis remains so low. Many gynaecologists are still completely unfamiliar with the term.

Since my diagnosis, I have had surgery to try to improve my condition. After countless other treatments, I decided this was the best option for me, but most women aren’t even given surgery as an option. Most women have to deal with this condition – and countless other vulval disorders – with such a complete lack of support, for so many years, before coming anywhere close to a diagnosis.

Why, as women, are we so ill-informed about this element of our health? Why is our pain so often dismissed and de-validated? Why is the silence surrounding women’s bodies and sexual health still so stifling? 

Personally, I found reading blogs from other sufferers incredibly important. Reading other people’s words gave me an insight into their pain and ideas of things I could try for myself. Most importantly, reading blogs made me feel – for the first time – that I really wasn’t alone.

Unfortunately, there’s no guarantee that one person’s experience will be exactly the same as the next’s, so there’s no assurance that you will find all of your answers in another woman’s blog post. But from my own experience, what you will find is a community and support network that is doing its very best to provide the answers that the medical professionals can’t or won’t. 

To anyone who is suffering and to anyone who is currently in pain: keep strong, keep searching – your answer will be out there. And in the meantime, I promise you that support from other women experiencing a similar thing is far more comforting than going it alone.

Breaking the Silence on Vulval Pain

“Well, you need to have sex, if you don’t it will only make things worse,” the gynaecologist told me.

At the time, I was a single woman at the age of 24. For lots of people, being told to have sex wouldn’t be much of an issue, but when you experience pain during sex like I do, those are hardly the words of comfort you want to hear.

Since the age of 18, sex has been a problem for me.

As a young girl, sex education didn’t teach me which feelings are normal and which aren’t, and I never learnt anything about issues or difficulties I might face in the future. As a result, for years I thought painful was how sex was supposed to feel – other women must experience this pain and just get on with it, right?

But from the way everyone else spoke about sex, I felt confused. It didn’t match up with my own experience. I felt lonely, isolated and upset, so I turned to a doctor for help.

I visited my university doctor 12 times over the 4 years I was studying.

“Maybe it’s this…”
“Maybe it’s that…” 
“Can you test me for this..?”
“Can you do a swab for that..?”

I went back time and time again with my own internet-researched-suggestions of what might be causing the pain I was experiencing and what the solution could be. During each appointment I was examined, assured that physically I was fine, and told it’s all in your head”.

Being told a problem is ‘in your head’ is never easy to hear. At the time, I understood it to mean that there was no solution available to me and I would need to work this one out on my own. Did I need to be more relaxed? Was I too tense?

I was young and clueless and I had no guidance whatsoever. It wasn’t until I eventually opened up to my mum that I realised I wasn’t being proactive enough. Yes, I was doing all of the research I could do on my own but I didn’t really know what I was looking for. I didn’t even know at this point that I could request a referral to a gynaecologist myself.

Years passed by, and I visited the hospital every 4 months in the hopes my next NHS appointment would shed some light on what was happening to me, but the process moved slowly. Each scan ruled out another potential cause of my symptoms, which I knew was a positive thing – but with each month that passed, the experience began to take its toll on my mental wellbeing.

I started to fill the gaps between these appointments any alternative method I could think of – Acupuncture, Hypnotherapy, Psychosexual Counselling… Each new option gave me a glimmer of hope, but time and time again I had no luck.

I felt let down by my doctors. I felt as though no one was taking me seriously. I’ve cried in medical appointments more times than I’d care to admit and each referral to a different department left me feeling abandoned – as though no one was willing to take the time to learn about the pain I’d been experiencing for years.

I was the one coming up with potential solutions and offering ideas to my doctors, but every suggestion I made was cast aside. I even had one Gynaecologist laugh and shrug while casually asking me, oh, what are we going to do with you?!, trivialising what I was going through even further.

According to the NHS, vulval pain affects women of all ages, although symptoms often begin before the age of 25. A study on almost 5000 women in America showed 1 in 6 women experienced the symptoms of vulval pain for 3 months or longer, with 60% of women visiting more than 3 doctors, many of whom provided no diagnosis.

How is it that so many women are experiencing the same problem, yet so much of the medical world is completely oblivious to our pain? Instead of being supported, we’re being made to feel like we’re ‘crazy’. I believed something was really wrong with me until one day, I found an online forum that changed everything.

All of a sudden, I found a group of women from all around the world providing support and advice for each other. It was unlike anything I’d experienced anywhere else. It was the conversations I had in the forum that led me to find a doctor in the UK who sounded as though she had not only heard of, but actually treated, many people in my position.

After all that time, all it took was a 15 minute appointment to lead to the diagnosis I’d been searching for. It may have taken me 8 years to get here, but I can finally say it;
I have Vestibulodynia.

It’s Time to Talk About Vulvas

Three years ago I went to the Women of the World festival at the Southbank Centre in London. I saw a fabulous illustrator called Jo Harrison who handed out colour-by-number, annotated vulvas. I took mine home and put it on my fridge. My friends would come round – educated, feminist, female friends – and they’d look and squint and tilt their head and say, “Oh! So that’s what that bit’s called.”

I was pretty horrified. It turned out that not many of us knew what our vulvas actually looked like, let alone what all the flaps and holes and mounds were called. This just didn’t sit well with me. If we don’t have the language to talk about our own bodies then how can we speak up and speak out about them? And if we don’t know, or like, what we look like, then aren’t we missing a very important part of ourselves?

So, I set up @thisisavagina, an Instagram feed dedicated to vulvas of all sizes, shapes and colours, to help us know what they look like and love them no matter what. I was utterly shocked to learn that girls as young as nine are going to doctors to ask for labiaplasty in the UK. The fact that young girls dislike themselves so much at such a young age, so much so that they want to have invasive surgery to change themselves, broke my heart.

These days, we gain much of our knowledge of vulvas from porn, an industry based around fantasy. Far from seeing a variety of normal and hairy vulvas as we grow up, many of us have never even looked at our own genitals in a mirror. Yet, somehow we still feel there is something wrong with them. Asymmetrical, too big, lop-sided, sticky-out – not the neat, little, ever-smooth Barbie vaginas we see so often. 

As well as making vulvas visible, I talked about vaginas. A lot. At work, with friends, with partners, with my parents, at parties with people I didn’t know. It became seriously apparent that the words ‘vagina’ and ‘vulva’ are words we loath to use, or even to hear. Most people prefer to mutter ‘down there’ and flutter their hands around their crotch or blush and stammer out the word ‘fanny’.

To be so embarrassed by such an integral part of you that you can’t even utter its name is restricting and sad and perpetuates the problem. It’s also detrimental to our health: 66% of 18-24-year-olds don’t go to see a doctor about vaginal problems because they are too embarrassed to even use the word ‘vagina’.

Alongside regramming work from brilliant artists on @thisisavagina, I created my own vulva artwork, including the geometric vulva that I use as a logo.

I fell in love with it because I think it looks like a vulva and a strong woman with her hands on her hips and a superhero motif all in one.

It represents everything I feel about being a strong woman. It started life as a screenprint on a t-shirt and as I wore it to parties, the pub, work and the gym, I had people asking where I got it and whether I could make them one too.

And so I did. I used a company called Teemill because they are ethical and sustainable and I couldn’t put my vulva on anything that wasn’t organic (a general lesson for life, too). Before long they were whizzing off t-shirts from the little print factory on the Isle of Wight to people all over the globe.

I wanted my fierce little vulva to go out into the world and start up more conversations. The more we talk, the more we know and the less embarrassed we become. And the more we can make women and girls love their bodies for what they are and what they look like, the better. We have enough to be fighting for without having to fight our own bodies.

I donate half of the profits to Bloody Good Period, a fabulous organisation that collects and delivers menstrual products to asylum seekers and homeless women in the UK. They are utterly brilliant – I’ve never met a group of people who throw the word ‘vagina’ around more than I do.

My t-shirts are a symbol of pride and love for vulvas. They are a way to start conversations about why it is important that we can use the words ‘vagina’ and ‘vulva’ without blushing or looking away. And they are, hopefully, a tiny step in helping women and girls to love their vulvas no matter what they look like.

So buy a t-shirt and join the vulvalution!

Vagina is not a bad word

Yes, I said it. Vagina.

People often think vagina is a bad word. It is not. Half of the world have vaginas, and the other half have penises. I cannot understand why we avoid talking about vaginas. When I am spending time with friends and I mention the word vagina they say, “June, stop! People can hear us!” It puzzles me how people can not deal with saying ‘vagina’. Ok, maybe I’ve said the word vagina too many times, but you get the point.

When I talk about Female Genital Mutilation (FGM), I often begin by saying that we are going to have a conversation about vaginas, fannies and muffs. FGM is the partial or total removal of a woman’s genitals for non-medical reasons and has life-long consequences on women and girls. FGM breaches at least 5 human rights of women and girls, and takes away a woman’s right to choose what happens to her body. In these cases, someone else has control over their vagina.

On 22 July, the UK government hosted the Girl Summit, a day to focus on ending FGM and Child, Early and Forced Marriage (CEFM). The Girl Summit brought together young people, ministers and change makers who made serious commitments to stop these heinous acts of violence. I was extremely happy to have attended the summit, and to be on the #YouthForChange panel. However, I am angry that it has taken this long for the government to take the issue of FGM seriously.

I am angry because we live in a society where discussing vaginas and FGM is simply not done. Thousands of girls in the UK alone have been subjected to this barbaric practice. I am angry that because we can not talk about vaginas and FGM in schools, many of my peers are still unaware that a practice like FGM exists. I am angry that because we can not talk about vaginas, we dismiss FGM as a ‘cultural’ practice that we do not need to interfere in. The idea that ‘culture’ could justify this practice horrifies me. If it was culture to chop of peoples’ ears or men’s penises, there would be worldwide uproar. Why is it any different when we are dealing with vaginas?

When I think about FGM, I think about how our patriarchal and misogynistic society allows the practice to continue. We are often reluctant to have conversations about women’s rights.

The Girl Summit was a landmark moment, a moment that when I first started talking about FGM three years ago, I did not think I would see.

We still have a lot to accomplish before we can end FGM and CEFM. Before we can talk about FGM properly, we can no longer see vagina as bad word.

Men must be involved in the conversation on vaginas and FGM too. The fact is, all men were birthed through a vagina but more importantly, men have daughters, sisters and wives. They need to understand why FGM is wrong and join the fight to stop it. We can not leave half of the population out of the discussion. Mothers do not cut their daughters because they want to, but because they want their daughters to be accepted in the society, especially by the men. If girls are not cut, they are ostracized in their communities.

FGM is a grave human rights violation that affects 140 million women and girls worldwide. It’s a practice that we need to stop in our generation.

There have been some amazing women already paving the way in the UK and worldwide: Efua Dorkenoo OBE, Naana Otoo-Oyortey, Leyla Hussein, Nimko Ali, Alimatu Dimonekene and young people such as Ifrah and Muna Hassan from Integrate Bristol. We are all standing as proud members of the Fanny Defence League (Female Defence League if you’re under 18) declaring that vagina is not a bad word. It it only when we no longer see vagina as a bad word that we can have honest conversations about FGM. FGM is not an issue that only affects women. FGM is everybody’s business and now is the time to act to end this practice in this generation.

Want to take action?

Cover Photo Credit: Judyboo, Flickr Creative Commons