Unheard, Unimportant, and Untreated: Why We Need to Talk About Vaginismus

by thethreepennyguignol

Okay, let me set the scene. It’s the middle of the day, busy street, bright sunshine, cold air. There’s me: I’m in ripped jeans and a green shirt. I’m gripping hold of the railing surrounding a communal public garden and I am crying so hard I can’t see. Fifteen minutes ago, I got my first smear test, the nurse putting a thin swab inside my vagina to check on my pelvic health, and it hurt so much she had to put her elbows on my knees to keep my legs from snapping together on instinct. I wish this is the first time that something like this has happened, but it isn’t. And that’s why I’m crying.

A few years ago, I was diagnosed with vaginismus, a pelvic pain condition caused by the involuntary contraction of the walls of the vagina. It makes penetration range between uncomfortable to impossible, often causing unspeakable pain for the sufferer in the process. It’s a condition that can be chronic or short-term, and varies in pain level by each person. With the condition shrouded in embarrassment, misunderstanding, and plain old ignorance, it’s hard to know exactly how many people suffer from it, though estimations range between 5-17% of the be-vagina’d population. It obviously affects penetrative sex, but also the ability to receive certain medical treatment and to use certain menstrual hygiene devices.

That’s a big number. And yet, most people I’ve spoken to about this have never heard about it. I spent years fighting through immense pain, mental anguish, and confusion about my condition (which I detailed in this article) before I received a diagnosis. But even after I had a name for it, the enormity of what I was facing was terrifying to me. I had no idea what I was meant to do with myself, no idea where to turn, no idea if I would ever feel normal.

Once I realized that there was something wrong, an entire world seemed to close off in front of me. No tampons, no dildos, no sex – no sex. Which meant, to my mind, no functioning relationships, no marriage, no childbirth, no children. How could I push a baby out of there when I couldn’t even get a swab into me without crying? I had no idea what was happening to me. But, worse, it seemed like nobody else did, either.

I went to several doctors for help with my problem, feeling stupid, and got palmed off with a number of excuses: that it was normal for first-time penetration to be painful for people with vaginas, that I was probably just inserting the tampon wrong. That the fact that it felt like someone was trying to prop me open with a brick was normal, somehow. Nobody seemed to know what was wrong with my vagina, and that’s far from an experience that’s exclusive to me.

Maggie, 23, struggled with healthcare professionals even recognizing her vaginismus – “I mentioned the symptoms to my mother, who searched the internet and found the diagnosis. I then went to see my moms’ gynaecologist at nineteen to get more information, to which he responded “what’s that?”.

Fran, an artist who wrote and performed a show about her pelvic pain, was offered similarly dismissive advice from doctors she approached with her issues.

“It had taken a great deal of courage to even book a doctors’ appointment in which I would say the word vagina aloud,” she wrote to me. “But I left feeling unheard, unimportant and untreated. One told me that going out and having more sex would help. I ended up having a lot of sex that was uncomfortable, hoping that over time it would get better. I’d spent a lot of time soothing the egos of partners who felt that my lack of enjoyment in sex was a reflection of their ability, and avoiding men who felt they had the ‘magic penis’ to make it all better.”

After being bounced through several doctors, I was eventually diagnosed when I was seventeen, when a woman from the sexual health clinic I was eventually referred to called me, spelled the name of the problem over the phone – and left it there. Armed with at least a starting point, I started looking into treatment.

Because vaginismus can be a mental issue, a physical one, or an overlap of the two, addressing the problem in a helpful way can be tricky. The treatment options I’d been offered via medical professionals – including one particularly memorable incident where I was offered numbing cream, because who cares if I could feel my vagina as long as a penis could use it, right? – felt limited.

For many people, including me, effective treatment only came after years of running into proverbial brick walls from various doctors and other healthcare professionals. Fran was told to “have a glass of wine to loosen up a bit or to pop some Savlon [an antiseptic cream] on the problem area”, and was asked if she had ever considered just not having sex at all.

“When a women with vaginismus goes to the doctor, they are offered estrogen cream, nerve pain medications, antidepressants and just told to “relax” during intercourse,” Tara Langdale Schmidt, inventor of VuVa Vaginal Dilators, wrote to me. “I personally have vulvodynia [another pelvic pain condition] and was told to drink wine and take Advil for four years!”

As far as my own condition went, I eventually purchased a bunch of cheap plastic dilators (long, dildo-like objects in varying sizes that are used to slowly stretch out the walls of the vagina) and spent one grim Christmas break forcing myself to get used to them. This eventually seemed to work for me-  I wasn’t cured, but penetration didn’t make me want to pass out from pain any longer. Though the condition is chronic for me and reoccurs often, consistent use of dilators seems to be a solid treatment option as far as I’m concerned. For other people, like Dawn, 32, counselling has proved the most effective option to treat the issue.

“After an internal scan that determined there was nothing physical causing any pain, the doctor told me about vaginismus. Me and my boyfriend attended counselling sessions through Relate at the recommendation of the doctor at the Family Planning Centre.  My relationship with my boyfriend remained strong; he came with me to the Relate sessions and we continued to have sex and work through this together. We’ve been together for fifteen years now.”

A few years after my diagnosis, I was finally able to have and even enjoy sex. But even with treatment, the impact that vaginismus had on my self-worth and self-image was profound. Feeling so broken for so long and having no reason to believe that would ever change has –who’d have guessed it – a severely negative effect on your relationship with your body and your sexuality.

“Vaginismus came with hatred for my body, feeling as if it had betrayed me,” Maggie told me, elaborating on her experiences with the impact of her disorder on her mental health. “In 2014, shortly before seeking treatment, I started to self-harm.  I never had the desire to cut until my struggle with vaginismus started to heavily weigh on me that year.”

For another person (who chose to remain anonymous, but who I’ll refer to as Caroline) I spoke to, the pain of vaginismus lends other traumas frightening new layers – “the concept of rape becomes even more terrifying. The sense is, if anyone tried to force their way inside of me, I would die.”

One of the things that I struggled with prior to diagnosis, and one of the hardest things I still deal with when the problem reoccurs, is the feeling that I was and am, in some way, irreparably broken. Of the variety of stories I received while putting this project together, this was one of the main themes that showed up again and again when people talked about how vaginismus had affected their mental health and their relationship with their sexuality.

“Before being cured, the concept of intercourse and virginity weighed on me very heavily,” Maggie told me. “I felt worthless, not because I hadn’t had sex, but because I couldn’t even do it if I had tried. I felt like a girl, versus a woman.”

“It makes me feel insecure. I can’t do as many positions as normal girls. I can’t have spontaneous sex. I still feel like I’m broken even though I’m “cured”,” Another woman wrote to me. “My sex drive was higher before I started trying to cure my vaginismus. Now being sexual just seems like a chore.”

But it’s not just our relationship with ourselves that pelvic pain can impact. With the issue being misunderstood and rarely talked about, the reactions of the people around us range from curiosity and misunderstanding to outright cruelty.

“No one broke up with me upon hearing about it, but most of them admitted at a later time that my inability to have full intercourse was a factor in their decision to end the relationship,” The same woman said of her previous relationships “All were curious to find out if I’d ever managed to “do it”.”

For Maggie, even her friends lacked compassion for her condition.

“I’ve had many people tell me it’s all in my head, and how I must be gay – I started identifying as bisexual at twenty-one, but not because of vaginismus. When I was still in high school, I told my closest friends, which turned out to be a huge mistake. A few months after graduating, one of them texted me saying I wasn’t worth physical intimacy. I later found out more people were involved in helping her write the messages, some of whom I had never told about my disorder.”

One of the biggest hurdles I ran into with treating my vaginismus was that of simple understanding. I’d never heard of it, and neither had anyone else I spoke to – or, if they had, it was something that they were too embarrassed to discuss. And I understand that, because we’re encouraged not to talk about anything that relates to our vaginas that isn’t completely on the side of “hot and sexy sex times”. For me, and so many of the people I spoke to for this project, it was the complete lack of discussion around vaginismus that made handling it that much harder. How can we talk through our problems when the vocabulary to speak about it doesn’t exist? It’s painfully clear – literally – that the conversation around vaginismus needs to change if we’re going to keep the people dealing with it from suffering in silence.

“Since it’s a combination of physical and psychological factors, it’s pretty easy for people to write it off as either a result of lack of passion in a specific relationship, or a sign of frigidity,” Caroline* remarked on the issue of misunderstanding vaginismus. “I wish I’d known earlier on that what I had was a condition with a name, not just a personal block or shortcoming.”

Maggie, like so many others, had to deal with the similar pain of not knowing what was wrong with her.

“For years, I thought I was alone. I wish I had known this is as common as it is. I wish I had known the effect it was going to have on me…I also think it would be incredibly beneficial to include vaginal dysfunction in public school sex education. Many adults don’t even know what this is and that is not helpful for the youth who struggle with this.”

For Dawn, the conversation around vaginismus needs to change drastically – by starting it in the first place. Like Maggie, she had never heard of vaginismus during sex education at school, and only became aware of the condition when she suffered from it and had to seek out treatment. When I asked Dawn what she wished she had known about vaginismus before her diagnosis, she told me this:

“That it existed and that it isn’t permanent – it is treatable and you can have a fulfilling sex life. It doesn’t have to be forever.”

And she’s right. While vaginismus can be a chronic condition and can reoccur across our lives, it is treatable. It’s hard, but you don’t have to live in silence or in pain or thinking that you’re broken for the rest of your life.

As I outlined above, effective treatment can range through a number of different techniques for each person who deals with vaginismus. For me, dilators helped me see the biggest positive changes in my vaginismus, but they can also be expensive and difficult to get your hands on. Because of this, I’ve teamed up with a few sites that create products for the treatment of pelvic pain, where you can purchase various products intended to help with vaginismus and other pelvic pain conditions with the discount codes provided below.

These are not affiliate links and I won’t receive any money if you decide to purchase something from these sites, but if you are dealing with issues such as vaginismus, I would recommend taking a look at these websites, seeing if there are any products you think might be useful to you, and taking advantage of the offers. I would also like to offer my heartfelt thanks to the companies who agreed to offer these discount codes.

StressNoMore: enter code FSD10 for 10% off

VuVaTech: enter code 25OFF for 25% off

SoulSource: enter code vag15 for 15% off

Finally, I would like to address people who might be struggling with vaginismus right now. Maybe you’re feeling hopeless. Maybe you’re scared. Maybe you’re feeling like I did, crying on the street after a smear test. And all of that is totally normal, and you’re allowed to feel those things. But the situation is not hopeless. Things may not be perfect, but they can be better than this.

If you’re struggling, consider reaching out to your doctor or another healthcare professional to speak about it. The Vaginismus Network also has great information about dealing with the condition. And if you just want to speak to someone about it, please feel to message me on Twitter or Tumblr, or email me at potloudle@gmail.com

 

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