Vaginismus is a condition that is generally thought to affect every 2 in 1,000 women. However, it's hard to know for sure, because many women are too ashamed or scared to seek treatment, or are misdiagnosed when they do.
In medical terms, vaginismus is the involuntary tightening of muscles around the vagina whenever penetration is attempted.
In our terms, vaginismus is a million things. It has impacted massively on both of our lives - not just in the bedroom. It's complex. It's not black and white. We strongly believe that every woman living with vaginismus has a unique experience and it's not a case of 'one size fits all'.
Here are our stories...
I first realised something might be wrong ‘down there’ when I was a teenager and tried to use a tampon. No matter how much I poked and prodded around, it just wouldn't go in. This led to a horrifying look at my vulva in a hand mirror, and the beginning of a full blown fear of that part of my body. Raised a Catholic, I was brought up with a fairly negative view of sex (unless married to your one true love obvs). Even when I ditched religion and started living the crazy student life with boyfriends, drinking and parties, the vaginismus hung over me like a dark cloud. Sure, I had a sex life, but I certainly couldn’t have penetrative sex. Still, I was young! It would probably sort itself out eventually, right?
Age 21, and with a new boyfriend who I really liked, I realised this probably wasn't going to disappear on it’s own, so I went to the doctor. I was referred to a psychosexual therapist, and at my first appointment with her was the first time I heard the word ‘vaginismus’. Since then, I have been in and out of therapy, tried a variety of treatments and slowly but surely had some breakthroughs. I’ve inserted a tampon (once). I can confidently insert vaginal dilators, which, when I first saw them, made me break out in a cold sweat. It’s often slow progress with vaginismus, but important to remember how far you’ve come and how bad it used to be.
I have also got married. The boyfriend that I met at 21 is now my husband. He is a champion, and has stuck by me and supported me through some pretty difficult, painful and embarrassing moments. I have always been able to speak to him about it, but he was the only one who knew, for a very long time. I was much too ashamed to tell friends or family.
UNTIL- In 2015, I had started seeing a new therapist and things were going well. However, I felt that the biggest gap in my treatment was being able to share my experience and feelings with another woman with vaginismus. There didn't seem to be anyone else, except from me! I asked my therapist if she could help me find a fellow vaginismus friend, but of course she couldn’t, due to confidentiality. So, I took it upon myself to start a blog (www.heyvaginismus.com)- I wrote about my treatment and progress and appealed for women in my area to come and hang out with me, drink wine and talk about vaginismus. This has been a life changing, pivotal moment in my vaginismus journey. I quickly began receiving emails and tweets from women all over the world, in the same boat as me, desperate for someone to talk to. Suddenly, the whole thing seemed normal. There were loads of us! And slowly I started to open up and tell my real life friends about vaginismus. (And guess what? They were totally fine and cool about it!
Through the blog, I met Lisa, my vaginismus soul sister and co-founder of The Vaginismus Network. We firmly believe that the key to getting a handle on vaginismus is support from other women and the ability to talk, share stories and get advice from women who actually know how it feels. Come and join us!
Honestly, I'm not quite sure where the heck my vaginismus came from! Commonly you will hear about women with vaginismus that have either had a strict religious upbringing or have been sexually assaulted during childhood; I've experienced neither of those things. I do remember not being at all surprised when my first attempt at inserting a tampon was unsuccessful. And, when my first attempt at intercourse completely flopped, I felt sadness, embarrassment and disappointment, but surprise? Nope.
I believe that my first serious relationship has impacted upon my vaginismus progress - or lack of. Looking back it is clear that, had I not been a teenager, had I been with a more communicative partner, had I not felt complete shame and had I been better educated sexually, then my current situation could well be quite different. Instead, my formative relationship has shaped the template for myself and my sexuality. Despite the issues that we didn't - or couldn't - discuss, my partner and I stayed together for 8 years, well into our twenties. Whilst we did have a sex life beyond the assertion that penetrative sex is 'sex', we certainly didn't have a healthy one. Our 'issue' was never spoken about (or early attempts to were shut down) and, instead, our sex life was three way: me, him and the massive elephant in the room. As a result, I did and accepted things sexually that in my heart I didn't really want to. I guess I felt a desire to conform to make up for whatever the issue was.
Fast forward a few years to when we broke up without ever having had a conversation about the issue. After that break-up, I closed myself off for several years: I didn't know what was wrong with me, I'd never discussed the issue in that relationship and I felt 'broken'. It's true that vaginismus isn't just a physical thing: it impacts every part of your life. I've lived an isolated life for many years, never quite sure what was wrong, never quite giving my whole self to friendships because I felt alien and ashamed. It’s impacted massively on my self-esteem.
The start of my breakthrough came five years ago. One night I decided to make myself completely vulnerable to a stranger - just to prove something to myself. I handed myself to him on a plate and yet he couldn't 'do it'. That for me was a wake up call that I needed to address something; I became depressed and everything I had been denying came to the surface. A few months later I started seeing a therapist and, a while later, learnt about the term ‘vaginismus’ and the fact that I was not alone!
Despite finally understanding more about what I was contending with I am still on a journey. It’s a challenging one, but whenever I feel overwhelmed or anxious I look back at the progress I have made this last year: understanding what I am actually dealing with, going to an amazing sex shop to discuss my condition, using dilators, reaching out to Kat and - finally - opening up to those closest to me and being my authentic self around them.
I feel passionately about The Vagnismus Network and its purpose to connect women who are struggling with this horrible problem. I really want these women to know that they are not alone and that we, too, are still on our journeys. As Kat says; come join us! We would be delighted to hear from you and, together, to stick two fingers up to this issue!