Embracing the Gap: Five Tips to Living Happily with Vaginismus

Jun 15

“I’ve never been able to have vaginal sex without experiencing immense pain, and it’s something I’ve spent years trying to find a solution to.”

BY: SARAH HILTON

The first time I encountered the word “vaginismus” was on a lazy Sunday morning scrolling mindlessly through Snapchat stories. I was immediately struck by a new article featured in Buzzfeed: “What It’s Like To Date When You Can’t Have Sex.” At the time, I was in my senior year of high school and still a virgin; all my friends had become sexually active already and I was feeling incredibly anxious about being left behind, but there was something about reading this article that felt a little too familiar to me, even as someone who’d never been sexually active before.

In the article, Lara Parker details her experience with dating as someone wdiagnosed with endometriosis, vulvodynia and vaginismus, which cause her chronic pelvic pain and prevent her from being able to have penetrative sex. She explains, “[T]he feeling of arousal was so often accompanied by emotional distress that I never wanted to try. I could hardly even listen to friends’ stories of sexual escapades without feeling like my stomach was going to fall out of my body.” A small part of me wondered if my connection to this statement meant that I also would never be able to have sex.

This was around the time that I’d gotten into my first relationship. With no prior experience, I was flying blind following the advice of friends. It wasn’t until I’d finally attempted vaginal penetration with my partner that I knew something was wrong: it felt like having a finger twisting around in an open wound. This was nothing like how my friends had described their sexual encounters. I couldn’t understand why my body wasn’t working the way it was supposed to.

Three years of pain and dating went by before I finally made an appointment with a gynecologist and had my fears confirmed. I was one step away from a panic attack in her office as she gently prodded my vagina with a Q-tip, after which she said that I absolutely had vaginismus.

Vaginismus is “an involuntary contraction of the muscles surrounding the entrance to the vagina, making penetration impossible or painful.” I often describe vaginismus to my sexual partners as “a panic attack in the vagina.” To put it simply, I’ve never been able to have vaginal sex without experiencing immense pain, and it’s something I’ve spent years trying to find a solution to.

When you’re a person with vaginismus, dating and sex is only half the struggle. I can’t even count the number of times I’ve gone to Google my symptoms and stepped away from my laptop in a fit of tears. All that I could find at first were articles that talked about how hard managing my sex life would be for the rest of my life, as doctors and patients alike described the extreme lengths that people would go to in order to have sex. Some had botox injected into their vagina, others went through months of hands-on therapy. I even found articles that said having vaginismus means “I was chosen by God to lead the life of a nun.”

I’ve had a hard enough time trying to find peace with my diagnosis, so when I read these stories and am told I’ll never get to experience a full sex life, it’s a whole other blow to my confidence that I need to deal with.

Below are the five things that I did in order to overcome these feelings of entrapment inside myself, and within them is my journey of how I went from distressed regarding my diagnosis, to being in control of it.

For those of you reading purely out of curiosity, read carefully: should you find yourself in a sexual or romantic relationship with a person with vaginismus, the way you respond to their diagnosis could enhance their experience with sex, or could be incredibly detrimental to the progress they’ve made in accepting their diagnosis. So please, read with caution and treat sex as gently as you would your partner’s diagnosis.

1. Get to know your body

To this day, I’ve never had a doctor tell me what the specific cause of my vaginismus is, and to me that was the worst part of my diagnosis. It wasn’t like I could hone in on the one thing that was holding me back from sex, because realistically speaking, anything could be causing my vaginismus.

Depending on the person, vaginismus can be caused by a number of physical and non-physical factors. Physical factors can include childbirth, physical or sexual abuse, pelvic trauma, pelvic infections, or hormonal changes. Non-physical causes can include anxiety and stress surrounding sex or sexual performance, repressed sexuality, traumatic events, rigid or unbalanced religious teaching, or a pre-existing conflict between the person and their partner. Worst of all, sometimes vaginismus has no discernible source.

It got to a point where I was living in fear of my own body. I couldn’t touch myself or even think about sex without being sent to the edge of a panic attack: the first thing that always came to mind was that there was something wrong with me, that I wasn’t meant to experience these feelings. But I knew the only way I’d be able to have sex at all was to get over that fear and touch myself on my own terms.

I’ve gone on plenty of internet deep dives to read up on the possible sources of vaginismus, and while understanding all of this was incredibly informative, it made me feel even more scared than I was before. How could I properly treat myself when there were suddenly so many possible reasons for my vaginismus? Where would I begin?

It’s also important to remember that while vaginismus has a broad range of causes, it can also be triggered by the anticipation of penetration from different objects. One person may not be able to insert a tampon or complete a pap smear, but someone else may reject penetration from a finger or a penis. There’s no one reason that vaginismus begins to take hold of a person, and having this understanding was the beginning of my journey to unpacking my diagnosis on a more personal level.

To me, while having this information was anxiety-inducing at first, it opened up a world of possibilities for how I could better explore what worked for me and what didn’t. I knew that every time I attempted penetration with a partner, it was almost always impossible. I’d also been too nervous to attempt penetration on my own, but I figured it was the best place to start. When I started to explore my body on my own terms—sometimes with a finger, sometimes with toys—it was easier to slowly understand what worked for me and how I needed to approach penetration comfortably with a partner.

Vaginismus can be caused by so many factors and can affect a person in so many different ways. I found that the easiest way for me to enjoy sex was to work with my diagnosis, to understand exactly how my vaginismus affected my body, and how I had to touch myself in order to learn what worked and didn’t work.

2. Don’t force the painful shit

And I don’t just mean forcing a penis in your vagina. One thing that made vaginismus especially scary for me was the thought that I would never be able to find love, but that’s only because of the person I was dating prior to my diagnosis (we’ll call him Mark).

Before getting together with Mark, I’d had my suspicions that there was something wrong with my vagina, but because my previous partners never pushed me to perform beyond what I was comfortable with, I never thought anything more of my situation. I simply assumed that I just wasn’t ready for sex.

At first, I thought Mark was just as patient as my previous partners—he found ways to work around my vaginismus, he was comforting when I felt overwhelmed, he even researched my symptoms to try and understand my situation—but I realized eventually that he had taken these opportunities to pressure me into getting help solely for his satisfaction.

There were a lot of times when Mark would tell me, “We never have to have sex, but how are we going to have children in the future if we can’t?”, or “I don’t mind not being able to have sex, but if we can’t have [vaginal or oral sex] then there’s not a lot left for me to enjoy from having sex with you.” He would often drop comments regarding how “frustrated” he was from the months that went by without sex. Pretty soon, I started to feel like my body was broken because I wasn’t able to give him the things he wanted. The problem, though, was that I was too petrified to leave him: Mark had spent so much time investing in this relationship despite my vaginismus, I didn’t think another person would give me the time of day once they found out I couldn’t have sex with them.

Shortly after, I reached out to my doctor for help. Because of Mark, I felt like I was under a deadline to “fix” my body. Unfortunately, my gynecologist didn’t have an opening for the next four months, and in the time we spent waiting for my appointment, Mark and I ended our relationship.

I’d been able to pull myself out of breakups before, but to me this was detrimental. Not only had I been left heartbroken, but Mark had spent months filling my head with the idea that I was unlovable because, as a woman, I was incapable of doing the one thing my body was meant to do. I was single, but for the first time ever I truly believed that no one would ever love me because I had nothing to offer them.

Ever since I’ve learned to adapt to my diagnosis, I’ve also learned that I shouldn’t have to sacrifice my self-respect for another person. Since my relationship with Mark, I haven’t encountered a single person who has had problems working with my vaginismus, and if they did, then that person simply wasn’t worth my time.

This is by far one of the most valuable lessons I could’ve taught myself in my journey to embracing my vaginismus. I can’t say I had a great relationship with Mark, but it’s because of him that I even sought treatment and am able to properly enjoy sex with other partners.

3. Invest in a set of dilators

Even though I’d invested hours and hours into researching my diagnosis, it didn’t get me any closer to “solving” my problem. My gynecologist initially introduced me to vaginismus.com, which was an excellent resource for me when I was first diagnosed. Though it was comforting at first, when I eventually saw what kinds of treatments were available to me,I began to panic.

The primary form of treatment for vaginismus is to use dilators: these are tube-shaped

tools specifically made to help a person with vaginismus to work up to penetration. Dilators usually come in sets of four to six tubes in graduating sizes.

The idea of inserting something into my sealed-tight vagina sent me into panic-mode. I

could barely get through a pelvic exam already without hyperventilating, let alone sex with someone I was intimate with; how was I supposed to relax myself enough to put something else in my vagina?

I couldn’t imagine it actually working for me, but my gynecologist assured me that it would ease my symptoms drastically.

“I used to recommend vegetables to my clients,” she said. “You know, start with a carrot and eventually work up to a zucchini—with a condom on it, of course. But now we have the dilator, so people wouldn’t have to use vegetables to make sex happen.”

It was terrifying at first, but I eventually broke down and bought myself a set of six dilators, starting at a 15mm diameter and finishing off at 38mm. When my package first showed up in the mail, I spent more time just staring at how quickly they grew in size instead of actually learning how to use them. I couldn’t help imagining that final dilator as a zucchini, shuddering at the thought of working up to something that big.

Doing dilator work on my own worked for a little while, but there were always times when that “panic attack” tightness would start to set in and my progress would plateau. It truly felt like an endless uphill battle, until I reached out to the Proactive Pelvic Health Centre for physical therapy.

This was by far the biggest step I could’ve taken in treating my vaginismus. Though I was off to a rocky start—crying in the therapist’s office as I explained to her the details of my vaginismus journey, struggling to breathe during my first physical exam—eventually I brought in my dilators every two weeks for my appointment and I started to climb up the ladder, moving up size after size with every visit.

Eventually, I stopped therapy. I had the tools I needed to move forward on my own terms, and with all the hands-on work we did, I felt no fear around treating my own symptoms.

For those of you who are curious, there are a lot more treatment options that are available for people with vaginismus. Outside of dilators and physical therapy, people have gone to such lengths as counselling or sex therapy, shock therapy, and even botox injections.

I wouldn’t even say you have to treat your vaginismus in order to live happily with it; I’m sure that for some, there’s a good chance their vaginismus never got in the way of their lives at all. But for others, myself included, moving up a size in dilators feels like I’m on top of the world. To put it into words, being able to successfully use dilators means being able to finally overcome the impossible. Even if I’m not ready to move up a size, knowing that I have some control in my vagina is more than I’ve ever been able to have, and that’s something worth celebrating.

4. Make more trips to the Stag Shop

The biggest misconception that comes with having vaginismus is believing that you’ll never lead a successful sex life.

As a queer woman, I didn’t believe I’d ever be able to have proper sex until I was intimate with my first girlfriend. It was about six months after I’d received my diagnosis, and I had already explained to her the ins and outs of my vaginismus well before we had sex for the first time. She was also aware of my dating history and knew how my past boyfriends had made me feel when they encountered my diagnosis. She knew to be particularly gentle in approaching any form of penetration, and that the best way to be intimate with me at all was to just be as communicative as possible.

I didn’t know I was able to be so comfortable with a person—or with myself—but eventually I’d begun to feel confident in ways that I never had before. Suddenly, we were having phone sex a few times a week, sending nudes, and making trips to the local Stag Shop to explore our curiosities. Our communication allowed us to explore intimacy in so many ways outside of penetration that I didn’t feel like I was missing out on anything. I didn’t feel like I was “broken” or unlovable now that we had found activities that worked for both of us and were enjoying every minute of it.

There’s certainly something to be said about the phrase “fake it ‘til you make it,” because even going to the Stag Shop on my own to invest in toys and lingerie amplified my confidence and ownership over my body. For the first time in a long time, I didn’t feel like sex and pleasure were out of reach for me. I was finally in control of my body, not worrying about being a burden or being unlovable simply because of an involuntary reaction; instead, I was finally accepting a facet of myself that I’d never gotten to know before.

Of course, this was a learning curve for the both of us, as it was her first queer relationship as well. Vaginismus or not, we needed plenty of communication to figure out what sorts of activities we liked and disliked (and this goes for straight couples as well!). And though the relationship didn’t work out in the long term, it introduced me to the parts of sex that I could (and actually wanted to) do. I never understood the “hype” around sex until I’d finally found the things that worked for me.

5. Talk to your friends

The first time I spoke up about my vaginismus was long before I even considered talking to a doctor about it. I was a few drinks in at a night out with some girlfriends at Jack Astors when the topic of sex came up. Just a week prior, I had tried to have sex for the third time with a boyfriend, but of course it ended in me holding back tears, and him confused about what he could’ve done wrong.

“I don’t know why,” I said. “But every time we try to do it it’s just way too tight down there.”

One of my friends spoke up.

“I’ve been there, too,” she said. “Having something in there has just never felt good for me, so I just stick to things that actually feel good instead of forcing anything.”

I didn’t expect my friends to have all the answers—they’re not doctors, after all—but having them there to listen and sympathize with my situation certainly made me feel more at ease, and even hopeful that eventually I’d be able to make sex work for me.

I’m sure anyone with vaginismus can understand how isolating it can make them feel—when you grow up hearing about all your friends having sex for the first time, or when you hear about everyone’s sexual escapades over a game of Never Have I Ever—eventually, you start to feel left behind, or like something is wrong with you when you don’t fit in with the crowd. But I found that the more I talked about my vaginismus, the better I felt—and I don’t just mean talking exclusively to sexual partners.

After my night out, I started to open up to more people about my sex life. Sure, it took a bit of explaining to clarify the difference between just being “tight” versus having something on a more serious level, but my friends always welcomed me with open arms and did their best to make me feel safe and heard.

Eventually, I’d started to discover that from sharing my experiences, a couple of my friends had vaginismus themselves. It was the first time I’d been able to connect with someone on that level about my sex life, and I didn’t realize until then how completely alone my vaginismus made me feel.

The more I talked to my friends and opened up about my sexual experiences, the more I realized that vaginismus is more common than I initially thought. Suddenly, it didn’t feel so isolating knowing that I wasn’t completely alone in my experiences.

I would also recommend for people to reach out to communities online like The Vaginismus Network for that sense of community as well. Just knowing that you have a community with even a relatively similar connection to sex not only assures you that you’re not alone, but it inspires hope that gaining control of your sex life is within your grasp.

For those of you with vaginismus, don’t worry about taking the advice that doesn’t work for you. That goes for my advice as well, though you should always keep in mind that vaginismus is not a diagnosis that will limit your life; rather, it is simply another facet of who you are that you get to explore. Remember to be gentle with yourself, to never let someone make you feel badly for performing differently during sex, and to do whatever you need to do in order to live a life that makes you happy and comfortable.

Sarah Hilton

Sarah Hilton is a recent UTSC graduate with an Honours Bachelor of Arts in English literature. She is beginning a Master of Information at the University of Toronto’s iSchool this coming fall, and she is currently compiling a collection of poetry.