He Who Must Not Be Named, Clare's Story

We’ve got creative with our metaphors for vaginismus over the years, but this week network member Clare finally took it to Harry Potter – or Voldemort, more accurately. She explained how naming her condition took away a huge amount of fear and shame. Because, as she puts it ‘when you name something, it takes away its power.’ 

We couldn’t agree more.

Hey Clare, thanks for speaking to us today! Before we get into your story, where would you say you’re currently ‘at’ with vaginismus?

I’m at a stage where I’m working on not letting vaginismus control me, and I’m getting rid of the blame. In the past, vaginismus dictated the calibre of partner I’ve felt I’m worthy of and the way in which I speak to myself. Some days I’m better at positive self-talk than others, but the days I’m able to be kind to myself are the days where vaginismus has less power over me.

So when, or how, did you first realise you might have vaginismus? When did you start talking about it? 

I first realised I had vaginismus in 2014 when I went to have PIV for the first time and my vagina put up an impenetrable Fort Knox security system. I went to the doctor the next day who suggested I had vaginismus. Whilst I was fortunate to get an early and accurate diagnosis, the following years were spent dealing with a medical system that hasn’t caught up to the condition. A family GP I went to see described the condition as ‘quite sad’ while another sexual health clinic I called for support said they had never heard of the condition. I started talking about the condition with my friends about three years ago and it gave me back some power. Much like Harry in the Harry Potter collection, I agree with the philosophy that fear of a name (or a condition in my case), only increases fear of the thing itself. I don’t have the same fear of people finding out that I used to. I’m not ashamed anymore.

Is there anything you’ve tried that’s helped you? Or anything that’s been totally unhelpful? 

I’ve tried ignoring it, hating it, and blaming myself for it. I’ve also hooked up with men who I allowed to say awful things to me. A favourite quote from a gentleman so far is : ‘I’m good at penetrative sex, I think I can fix you’. By that logic, I assume he also thinks he can help people in wheelchairs because he is ‘good at walking’.

The most helpful things to me have been choosing a positive narrative and actually being able to laugh at vaginismus. A few years ago I wouldn’t have thought that would be possible, but laughing at vaginismus seems to take away a bit of its power.

What would you say to anybody struggling with vaginismus right now? 

Don’t let it control you. Vaginismus is, without a doubt, a prick of a condition. It has made me feel some of my lowest lows, but it has also given me resilience and showed me the power of community. My value doesn’t come from my pelvic floor muscles.

Is there anything you’ve learnt through the process or would love to share with people? 

The resources available since I found out I had vaginismus in 2014 have vastly improved. When I first heard about the condition I jumped onto Google and was met with various articles and sites that were filled with negative rhetoric rather than support. Now, communities like the Vaginismus Network and books like My Broken Vagina by Fran Bushe offer a narrative that is helpful, positive, and dare I say; fun! I have also learnt that plastic dilators don’t work for me and that some people offer unqualified opinions about vaginismus on the internet that aren’t worth reading.

What would you like to see more of/less of surrounding the worlds of sex, love, medicine and more? 

I would like to see vaginismus spoken about with a similar tone to articles on erectile dysfunction. Articles on ED are full of language about how common the condition is and how women in relationships can support their partners. Vaginismus still doesn’t have the same narrative around it and seemingly puts the onus onto the individual.

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If you’d like to share your story with us, email Natalie at vaginismusnetwork@gmail.com

My Vaginismus Bucket List, by Lisa

I recently had the pleasure of speaking at the annual Vaginismus Awareness Day event, hosted by Sh!. The event was incredible, and it was such a joy to connect with over 80 people worldwide to talk all things vaginismus.

I decided to use my slot to share my vaginismus bucket list pre founding the Vaginismus Network, and to reflect on how I feel about it today because so much has changed for me in how I view myself and how I view living with vaginismus. I’d like to share that bucket list with you, as I believe it will resonate with many and it is my hope that you can take some key messages from it.

But first, here’s a bit about my experience of living with vaginismus for context. Rewind to 2016, the year that I finally accepted that I have vaginismus and the year that I very, very tentatively started opening up to friends about it. Prior to that I had spent 15 years not talking to anybody about what was going on. I’d lived an 8-year relationship without ever addressing the elephant in the room, which was the fact that we couldn’t have penetrative sex. This lack of communication about what was going on meant that I overcompensated in many ways sexually and would often do things that I didn’t necessarily want to do, but I felt that I had to because I couldn’t give my partner that one thing that everyone else was supposedly enjoying so easily. Either that, or I took myself off elsewhere mentally.

When that partner and I broke up, I closed up even more: we hadn’t addressed the issue, I didn’t have a word for what it was, and I believed I was broken. With friends, I always felt like I was a phoney, never giving my full self to my friendships and pretending everything was okay. I was the friend that suddenly needed to use the toilet or would suggest another round at the bar whenever the mention of sex and relationships came up (I know that many of you will be able to relate to that one). I wouldn’t date because, in my mind, nobody would accept me so why even bother trying. I wasn’t very nice to myself at all, and I would tell myself that I had failed at being an adult: so much worth was placed on my ability to have – or not have – penis-in-vagina sex.

So, when I did start addressing the issue back in 2016, I had a very clear vaginismus bucket list (drumroll, please...):

• Be able to wear a tampon like a “real woman/adult” (on behalf of past Lisa, I apologise for the language I used)

• Get a penis in my vagina. All the way. Ideally comfortably (no mention of pleasure)

• Have a smear test because, health reasons aside, a part of me felt like I wasn’t a proper adult as I hadn’t had one (apologies once again...)

• Move on with my life and forget the whole thing ever happened

I hope that isn’t relatable to anyone, but I have a sneaky suspicion that it could be.  

It was when I met Kat the following year in 2017 that it struck us how life-changing it is to connect with another person who completely understands what you’re going through. Finally, I was not alone! Very quickly Kat and I decided that enough was enough – as much as we wanted to, we couldn’t turn back the clock and relive our late teens and twenties vaginismus-free and liberated, but we could help others. And as you all know, we then went on to set up the Vaginismus Network with the aim of connecting, supporting and empowering others with the condition. Essentially, we longed to provide other people with something that we could have really used as two young women growing up with the condition. 

Whilst I set up the network to help others, it’s through running it that I’ve realised just how much it has helped me too: I’ve learnt so much, I've met so many sex-positive and like-minded individuals, and my confidence has grown in so many ways that I now feel like a completely different person. And it’s because of all this that my own goalposts have since changed. So, let’s take another look at that bucket list:

• Be able to wear a tampon – I've never worn one and I literally could not care less. Period pants for the win. And I am certainly no less of a person because I haven’t inserted a cotton tube into my vagina.

• Get a penis in my vagina - Having grown up with penis-in-vagina sex on a pedestal as the only way to have sex, it has been so liberating for me to realise that there is so much more to sex than that. Yes, that’s one way, and it can be a wonderful way, but it’s certainly not the only way. Also, through all of this, I have learnt so much about myself, pleasure, what I do and don’t like that, actually, when I think back to a parallel world where I might not have had vaginismus, I almost feel sorry for that version of me as I can clearly see her with the same guy, having penis-in-vagina sex only, going through the motions and not experimenting or learning about pleasure more broadly.  So, I’ve since knocked that one down a peg or two and, for me now, it’s certainly not the end goal.  

• Have a smear test – Well, firstly, same as wearing a tampon, very quickly I came to realise that having a smear does not define who I am as a person! And I also came to realise that treating vaginismus isn’t a linear, tick-box exercise. It’s not a case of tampon (tick!), smear (tick!), penis (tick!). For instance, when I was able to insert the largest dilator in my set of trainers very comfortably, I certainly wasn’t ready to then just go ahead and book my smear. And I still couldn’t insert a tampon even though it was so much smaller than that particular dilator. Vaginismus is complex and penetration of one thing doesn’t necessary mean penetration of all the things.  A smear was a big source a pressure for me, but I’ve learned to listen to my needs and do things in my own time.

• Move on with my life and forget the whole thing ever happened – Well, clearly that hasn’t happened! But, in all seriousness, you don’t have to go out and shout about it from the rooftops (unless of course you want to!). Just connect with others, talk to a mate about it, start to let it become an okay part of your life. For me, accepting it was the biggest thing.

I hope through what I’ve shared you can see the power of communication and connecting with others – doing so has genuinely changed my life. I also hope that this serves as a reminder that we are all unique, with different needs and bucket lists. The most important thing is that you do what feels right to you, in your own time and at your own pace. But whatever your needs, always know that you are never alone in this.

Buddy update: Julia and Madge

When Lisa and Kat set up the Vaginismus Network, they had one clear goal in mind: to ‘match’ other people with vaginismus, as they understood first-hand just how life-changing it can be to know someone who completely understands what you’re going through. With sheer determination, and little else in terms of a long-term plan, they agreed that, even if they could connect just two people, their job would be done.

Fast forward to 2021 and the Vaginismus Network team (of now 4) have connected hundreds of people with vaginismus worldwide through their buddy system (as it has now come to be known). And two of these lovely people, Julia and Madge, would like to share a bit more about how their lives have changed since meeting one another.

(this also happened to take place in 2020… surely one of the very few positives of the last year?)

Madge

We both reached out to the Vaginismus Network seeking a buddy in the summer of last year. These quotes are direct extracts from our first email exchange:

“I was diagnosed with vaginismus when I was 19 and had a bit of a rough go of it for many different reasons. It was isolating and confusing. I also had experienced a lot of genuinely poor medical and therapeutic advice around it which, needless to say, did not make anything better. I am so happy to have found the Network and connect with others who have experienced similar journeys while managing and/or recovering from the disorder.”- Julia, July 2020

“Vaginismus was introduced to me when I was around 19 also but I did not receive an official diagnosis at the time. Unfortunately, I’ve spent many, many years harbouring it as a shameful secret up until only a couple of months ago. I found the courage to tell my therapist and that ignited me to begin physiotherapy and write a series based on my experience living with the condition. I’m truly in the baby stages of healing with it and it’s still quite a loaded topic for me.”- Madeline, July 2020

Julia is now one of the most important people in my circle. My life is better with her in it. We recently did a podcast where we shared our funniest/most embarrassing vaginismus stories - something I never thought I’d be in a place to do so publicly. I could do it because we had each other. I’m so grateful she’s by my side.

Julia

In a similar sense, I have found so much in my relationship with Madeline. Beyond her warmth, her vibrant energy, and contagious passion, Madeline offered a resource I did not fully understand was so inherently necessary when diagnosed with vaginismus. While I am still learning how to accept it, lean into it, and be more responsive to it, Madeline provided community.

When I met Madeline, a lightbulb went off in my head. Her verbiage in describing the disorder – either in utilising truly illustrative descriptions (“scraping out the inside of a cantaloupe” in reference to the pain of penetration) or just being colloquial in conversation about the difficulties of navigating sexual desire and intimacy – Madeline had me question my isolatory nature as well as why our connection and union was so integral to recovery. The Vaginismus Network acted as a light for someone who did not necessarily know they could not see.

I now know that as much as I want to provide light for others with this disorder, Madeline has provided it for me. Without her this process would be so much more difficult - and for that I am eternal in gratitude and appreciation.

If you’re interested in being connected with another person with vaginismus, please reach out to us at vaginismusnetwork@gmail.com with your DOB, location and how you would like to connect (e.g., email, WhatsApp, Skype, in person (finally – yay!)) and we will do our best to find you your perfect vaginismus buddy.