We Need To Talk About Vaginismus

Love hurts, but sex can too. Many, many women in Ireland are currently experiencing pain during sex – some have been for their entire lives. And while there continues to be shame, secrecy, and embarrassment when speaking out about such issues, the tide may thankfully be starting to turn, even if slowly. 

Vaginismus is a condition that causes the muscles of the vagina to contract involuntarily at the point of penetration. Those living with vaginismus can experience trouble having penetrative sex of any kind, or even using a tampon comfortably. As the vaginal muscles tense, this can lead to a painful burning sensation, oftentimes making penetration incredibly uncomfortable or even impossible. 

While vaginismus is still a relatively misunderstood condition, it is thought to be very common. Forbes reports that between 1 and 17% of people in the US experience vaginismus every year, while a UK study from the International Journal of Obstetrics and Gynaecology found that 1 in 10 women aged between 18 and 64 find sex painful. 

Harriet* has had vaginismus since her early 20s. Following a diagnosis by her GP, she kept her experience to herself for years, before eventually opening up to close friends and family. Fearful that potential sexual partners would judge her, she avoided dating for a long time – until she realised that most people weren’t as judgmental as she feared. 

“The vast majority of my partners have been really supportive,” she tells STELLAR. “Speaking to my friends was the turning point though, I was terrified of feeling shameful but everybody was so great about it. A few women [with vaginismus] I’ve met online still keep it to themselves. It must be so difficult because I found that speaking out was the best thing I could’ve done.”

Treatment for vaginismus can range from psychosexual therapy to the use of dilators to even botox. The condition itself can lead to stress, anxiety, and of course, pain, but oftentimes, it’s shame and silence that can make living with vaginismus so much more difficult. Sex educator and author Grace Alice O’Shea says that if there was a better understanding of the condition (and of women’s bodies in general), so many people would not feel so alone.

“Shame grows and flourishes in silence and secrecy,” she says. “We shouldn’t be normalising painful sex, we should be talking about it, because it’s too common. Vaginismus is no walk in the park. I had severe vaginismus for years but it absolutely was not the end of the world, it was treatable, and there was so much I learned in the process. It was the shame that did so much more harm. The embarrassment, the effect on self-worth, the loneliness. We all know how horrible loneliness can feel.” 

Jennifer* is currently living with vaginismus and endometriosis. She says she saw the link between the two when she noticed the symptoms of one condition would get worse alongside the other. Since becoming aware of vaginismus, she has only spoken to one other person who has it – a woman who, like Jennifer and countless others, weren’t even aware of the condition’s existence.

“[Speaking to her] was like a breath of fresh air,” she says. “There is 100% a lack of awareness here in Ireland. Doctors never really wanted to listen to me and searching Google means you have to deal with the websites telling you you’ve got cancer. I still have never heard the term in mainstream media.”

So how are those living with vaginismus tackling that lack of awareness… and loneliness? Once upon a time, opening up to friends and family may have been the only port of call, but now the prevalence of social media has allowed women from across the globe to share their stories with one another, to empathise, and most importantly, to feel accepted. Grace Alice says that if she had had access to vaginismus communities when she was a teenager, she may not have felt so alone. 

One such community is @thevagnetwork, an Instagram page and website providing education and information about vaginismus, and connecting an entire community of women who are, for the most part, going through a similar thing. Founded by Lisa MacKenzie and Kat Wilson, the project shares the experiences of those living with vaginismus sensitively, providing a space for learning and empathising. At the time of writing, the account has over 19,000 followers – and is growing. 

Lisa says that she and Kat set up the network after realising how life-changing it could be to connect with someone who had a similar experience. “We lived a long time feeling like we were the only people in the world dealing with this issue,” she says. “For me, I lived 13 years feeling so alone and ashamed and not opening up to anyone in my life before I finally sought therapy and began to accept that I might have vaginismus.

“Everything I found online at the time was posted by a niche pocket of married heteronormative women who largely wanted to overcome vaginismus to get pregnant. It was amazing to see people talking about it but I was neither of those things. Our initial aim was to recreate that sense of connection and understanding that we both felt, but we also wanted to provide something wider, something that our teenage selves could have really used.”

The network aims to educate, but they also host events, collaborate with other sex positive communities, and even connect people living with vaginismus through their email ‘buddy system’. The response from followers, Lisa says, has been overwhelmingly positive. “The common sentiment tends to be one of relief to have finally found people speaking their language,” she says. “We had one person reach out recently to say that they had learnt more in the one hour since finding us than in the 12 years of struggling with vaginismus on their own. We’re not exceptional; that simply goes to show the positive impact that social media can have.”

Psychotherapist Orlagh Reid specialises in sexology and intimacy, providing psychosexual therapy to women in Ireland. Echoing Lisa, she says that her patients have detailed a chronic lack of information surrounding vaginismus, with all (yes, all) of her female patients turning to social media and online forums for support that was unavailable elsewhere. 

“The lack of information exacerbates these symptoms and heightens women’s sense of hopelessness, and usually that is why they end up coming to therapy,” says Orlagh. “As a result, many women with vaginismus learn to just manage the condition rather than working towards resolving it positively. Shame around female sexuality is a sociocultural conditioning experienced by many women in Ireland. It’s the reason we find it so challenging to talk openly about sex.”

Orlagh set up The Vaginismus Blog Series to combat this lack of resources in Ireland – but she’s not the only one who’s contributing to the conversation. Holistic sex educator Jenny Keane conducts online workshops to teach people more about their bodies, Dr Caroline West’s podcast Glow West explores sexuality from a wellness perspective, Dr Maria McEvoy has launched Ireland’s first study in 40 years on vaginismus and the impact it has on women’s lives. Awareness is growing, slowly, but for the most part, vaginismus remains a hidden issue. 

But so many sexual educators, and people living with vaginismus, are intent on changing that. Grace Alice says that communication is crucial, but so is acceptance. “There’s a stigma in saying there’s something ‘wrong’ with you sexually, we’re told that we’re broken and that’s just not true,” she says. “You’re worthy and desirable, and a really good sex life is still possible even if you can’t have penetration right now. 

“People want to be seen and accepted. Even if it’s saying ‘I don’t know what that feels like, but it sounds difficult and I’m here for you.’ We should all curate our Instagram feeds and follow people who advocate for sex positivity and pleasure, and that message will start to sink in.” 

*Some names have been changed. 

Tags:

• health
• Sex
• vaginismus
• Women's Health