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.