My Vaginismus & the Vaginismus Network #Periodically 23

I had a different blog planned for this week but after a rather special evening on Friday I’ve had a change of heart. Today I want to talk about something I’ve only touched upon before – Vaginismus. 

In #Periodically 18 – “Can I examine you?” – I spoke about how my gynaecologist had informed me that as well as the unidentified shit storm working its way through my womb that I had now also developed a “superficial problem” – vaginismus. But that’s the first and last time I mentioned it. Since then, I’ve turned the blog’s focus towards the hormonal adventure I’m going on in an attempt to resolve the internal issues. Given that #Periodically is a blog where I very graphically talk about the inner workings of my reproductive system, why did I stop talking about vaginismus? It was a diagnosis I was neither expecting nor knew much about, but when I started #Periodically I wrote, “I don’t want to write about it after the fact, because after the fact might not be for a long time. I want to write about it while it is happening.” The same is true for vaginismus, so let’s do that. Today I want to talk about vaginismus, what it is and how an evening with a group of extraordinary women at the Vaginismus Network completely transformed my feelings towards it.

Vaginismus is the uncontrollable clenching of muscles in and around the vagina upon penetration. It can be compared to shutting your eye if someone tries to stick something in it. It’s a reflex, a physical reaction and not one that you have any direct control over. Most of the time it results in penetration, whether that’s a finger, a cotton bud, a speculum or a penis, being impossible and/or incredibly painful.

The pelvic examination where my gynaecologist noticed I had vaginismus was painful and uncomfortable, more so than normal. When he said that I had vaginismus I was surprised because I don’t think it’s something I’ve regularly experienced during sex. I can think of one, maybe two occasions where I now think “oh, is that what was happening there?” It’s probably also relevant to note than this was nine months after I stopped having sex, for a variety of reasons, including the fact my deep dyspareunia (sex that hurts deep inside) was too much to handle, physically and otherwise.

This means I developed vaginismus after having had normal and healthy (sort of) penetrative sex in the past. On Friday, I learnt that there’s a word for this too – “secondary vaginismus”. Many who suffer from vaginismus have never been able to endure let alone enjoy penetration, going overdue for pap smears and not being able to use tampons – this is primary vaginismus.

My gynae gave me the news and said I would need therapy, physio and maybe anti-depressants. In reality he only referred me for therapy, which I started last week after a four month wait. I’m still not having sex but I have had the displeasure of noticing vaginismus on my own for the first time. Why? Menstrual cups! Just when I thought I had mastered them, something bloody well changed. There I was, cup in hand and sort of in vagina. As I tried to get it in place I experienced that horrendous, breathtaking pain for the first time since I last had an internal ultrasound or sex. I immediately removed the cup, steadied myself and caught my breath. When I tried again, lo-and-behold my vagina was closed for business. Rock solid and painful, nothing was getting in there. So it was nickers down, on the loo with a menstrual cup in one hand that I had my first personal encounter with vaginismus.

Like I said, I have only just started counselling, so I’m at the beginning of a weird “journey” to discover why my body is doing this and how I can stop it, but I personally think that what I’m displaying is “harm avoidance behaviour”. My vagina is closing to prevent further pain inside – it’s quite clever really. There are of course other reasons it could be happening, from the whiplash I’ve experienced from surgery to ultrasounds (all of which have involved something entering my poor vagina) to something I haven’t even realised yet. It does add a further complication to my situation though. As my GP(s) and I concentrate on finding a solution to the internal pain worsened by penetrative sex, I now have to deal with the very real possibility that if and when I next try to have sex, it might not be able to happen. Man, that’s piling a lot of pressure on any future relationships I may have!

I am lucky in so many ways. My vaginismus is secondary, meaning I know that sex can be a positive experience and that my vagina is, or at least once was, capable of opening. My vaginismus being secondary also means that I have a definitive time span in which to search for what changed to trigger my vaginismus. My vaginismus is apparently sporadic, or it only happens when there’s serious internal pain, meaning that most of the time I can use menstrual cups – tampons pose something of a different challenge, however. It’s likely that my vaginismus will be triggered by sex, but since I’m not currently dating or having sex it’s not a problem I have to deal with at the moment. I have time.

On Friday I attended the Vaginismus Network’s first meet up in London. I didn’t know what to expect when I walked into the Sh! Women’s Erotic Emporium, but what I found was a room full to the brim with brilliant women who happened to have vaginismus. For most people there, including me, it was their first time meeting others with vaginismus. What was really empowering about the event was that as united we were with the spasming of our vaginas, everyone was completely unique in their experience, not only of the condition but of life, work and relationships. Vaginismus can affect anyone with a vagina, it holds no prejudices. For some it’s easy to pin point what causes vaginismus, for others it’s easy to speculate (like me) and for a few there’s literally no obvious reason why it’s happening, which can make recovery all the more tedious and complicated. Founders Lisa and Kat have created something incredible. As you know, I attend my fair share of female health related events and talks, but this was different. It was like being at the start of a revolution. Some of the ideas being spitballed at the event could be game-changing. It’s certainly spurred me on with that “secret” project I’ve been working on lately.

In my very limited experience with vaginismus, the impression I’ve so far got from discussions about it (with people who have no experience of the condition or even having a vagina) is that it’s a case of women needing to relax, to lighten up or to be less uptight. Holy moly it felt good to bitch about those judgements with people who really got it. And the truth is, now that a few of us know that we’re not alone in our thoughts on vaginismus, we know that we have to go out and talk about it – otherwise no one is ever going to understand, let alone start researching the damn thing. Friday night saw a barrier come down, so while our vaginas might not want to open, now at least we can open our mouths to talk about vaginismus.

My experience is new and manageable for the time being, but for many of the people I met on Friday, this is not the case. I am so grateful to have found a group like the Vaginismus Network so early on, imagine what could change if the same was true for everyone? A huge thank you to Lisa, Kat, the inspirational and hilarious psychosexual therapist Sarah Berry and the Sh! Women’s Erotic Emporium for creating such a safe, supportive and fun environment – you’ve already made a difference bigger than you know. Keep an eye on the Vaginismus Network – it’s one to watch for sure.