Vulvar Pain: What’s Wrong with Me?

TweetWhen I ventured into the first forays of womanhood and was introduced to feminine hygiene products for my bodily changes, my mother told me, “Don’t use tampons – they’ll give you TSS [toxic shock syndrome].” This was something I quickly accepted and agreed with, because tampons were dangerous – why would I want to stick something up there? This ideology followed me into middle school, when I declared (influenced by my Christian upbringing) that I was going to remain abstinent until marriage, a rule that I practised during my first relationship. I attributed my reluctance to let my boyfriend go near my genitals as a sign of my commitment, and not anything else. When I watched women in porn touch their vulva and put fingers in their vagina, I flinched. Didn’t that hurt? When guys tried to manually or orally stimulate me, it brought me more anxiety than pleasure, and my grimaces were probably mistaken for the latter. It wasn’t until I was with more sexually experienced partners that I realized that perhaps the pain and discomfort I was feeling wasn’t a common experience shared by most women. I found myself lying about being on my period or making excuses for my “sensitive vagina” so that people wouldn’t touch me down there. Sometimes sexual encounters would make me anxious because I could anticipate the pain, and I felt inadequate that I couldn’t give my partners what I assumed to be a fulfilling and satisfying experience. If I had an interest in someone, I would be deterred by imagining the stress and hassle of having to explain everything and disappointing him. Who would want to be with someone they couldn’t have sex with, whether it was for a few months or for just a night?

I remember crying out of frustration after I spent hours trying to insert a tampon with no avail. My friends told me I just needed to relax – a TV show, candles, tea, ocean sounds, and so on, and they suggested I try various poses to fit it in more easily. They gave me multiple pieces of advice, none of which worked, and I’ve just come to accept that sometimes I won’t be able to go swimming, play sports, or twirl around in white dresses like they do in the commercials.

While it certainly hasn’t been an easy road, learning about vulvar pain and its prevalence have helped me come to terms with my body and try not to beat myself up over it. Treatment options do exist that would combine physical and cognitive therapy, and while I’m not currently pursuing them, I plan to the next time I have a long-term partner. Aside from one particularly pushy gentleman who I had to leave abruptly, most people have been surprisingly accepting and respectful of my boundaries, and I’ve gotten better at (or maybe just more used to) explaining why I can’t have penetrative sex. Oftentimes I’ve found that my female friends can relate, and they share their own stories of sexual or vaginal pain. Where, originally, I was ashamed and embarrassed to talk about my condition, it’s now a disclaimer before any sexual activity – if a man can’t respect that I don’t want to be touched down there, then he doesn’t deserve to touch me at all.

Anonymous guest blogger

Vulvo-what?! Vulvodynia: Chronic genital pain - it really exists!

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Sex is supposed to be a fun, pleasurable activity enjoyed by oneself or with one or more partners. However, sometimes pain during sexual activities occurs, especially when vaginal penetration is involved—maybe from a partner penetrating too deeply and hitting the cervix, or perhaps there is not enough lubrication to keep the friction from chafing. Genital pain during vaginal penetration can happen to most people at some time or another; it shouldn’t cause concern if it happens from time to time, especially if there is a reasonable explanation (for example, seeing a long-distance partner for a weekend of sexy times can leave a person feeling a little sore and tender!). But, if the pain happens over a long period of time and nothing seems to explain its presence, the pain may be there because of something that needs to be treated, like an infection, a skin condition, etc. And if the pain is there and there is no observable cause for it, then it will likely be called “vulvodynia”—a term reserved for chronic external genital (vulvar) pain that has no medical explanation.

If the belief is that pain that has no apparent cause then the thought processes of a person experiencing genital pain will likely reflect those of many health professional out there – which is that the pain is “imagined”, “made up”, or “not real”. However, this is not true; most causes of chronic pain are simply unidentifiable. Healthcare professionals and researchers cannot pinpoint (yet!) a “single cause” of genital pain (we wish we could!). It might be because assessment tools are not that accurate, or it might be because the chronic pain has evolved from where it started into something that cannot be traced since it now involves many other systems in the body and brain. But understand this, genital pain is real.

Because we can’t see what is causing the pain, we must rely on a person’s self-reported experience. Herein lies the issue: the pain is real, but we can’t see it, and many health professionals out there just won’t settle for this paradox. Especially when it comes to painful genitals during sex. This combination has led to many patients being told things like: “the pain is all in your head” or “just relax!!” or “have a glass of wine before sexual activity”, or “go see a sex therapist”. These comments are likely meant to be helpful (and probably come from a place of genuine concern!), but many report to us that the messages they receive are harmful and that the pain itself remains untreated. Can you imaging getting up the nerve to ask about pain you’ve been having for years, only to be told that there’s “nothing wrong”? It might make you second-guess your own judgment, or worry that something must be wrong with you or your relationship (Hey! Maybe Freud is working in mysterious ways to cause you pain during sexual activity with your partner because your partner is not right for you…). You might just continue to “grin and bear it” during sex to continue pleasing your partner. Some people probably quit looking for help right then and there and accept that this is the way it is, whereas others keep searching.

We are not talking about a rare pain condition here. We are talking about a pretty common condition called: vulvodynia. Vulvodynia affects about 16% of the population. It impacts sufferers in many areas of their lives, including psychological wellbeing, sexual function, and quality of life. These people usually search for years for effective treatments, if they approach health professionals at all. There are different kinds of vulvodynia, with some being more well known these days than others. However, vulvodynia is still relatively unknown as compared to other chronic pain conditions. (*Side note: one awesome resource for information is the National Vulvodynia Association’s website (www.nva.org) for those of you who would like to learn more, as well as get in touch with others who have vulvodynia. Our website also has some great resources! (sexlab.ca).

The Sexual Health Research Lab (SexLab) has been studying vulvodynia for over a decade. We have heard time and again about the negative experiences participants have had during treatment-seeking. Despite the good intentions of the healthcare professionals they worked with, they weren’t receiving the care and validation they needed to cope with their pain. We decided to use the power of research to help change that.

We know that when trained professionals ask really good questions, they’re quite accurate at giving the correct diagnosis. This is amazing news, since it means that when we work well with patients and ask good questions, we “get the job done” very well. However, not all doctors have that kind of expert training.

To make those good questions easily accessible to those without such training (and those suffering from vulvar pain), we created the Vulvar Pain Assessment Questionnaire (VPAQ). The VPAQ can help describe the characteristics of the pain, how it impacts one’s life, how it relates to one’s partner, and how a person is coping with that pain. We even tried part of it out with our collaborators at Oregon Health and Science University, and early results suggest that both doctors and patients found it accurate and helpful! However, our work has only just begun.

Now that we’ve got the questionnaire ready to share, we need to test it out to make sure it reliably works like we believe it does. In fact, we’re about halfway through our next study. This is where you come in. We are inviting anyone experiencing chronic vulvar pain to fill out the VPAQ online—twice (4 weeks apart)—so we can see how the pain might change over time, and why. The more research we have to back up the usefulness of this questionnaire, the easier it will be to make it better, and to convince health care professionals all over the world to start using it.

Even though this is one small step in the quest to help people with vulvodynia find relief, we are confident that having this questionnaire available to patients and providers will help with communication, finding the right diagnosis and coming up with a treatment plan that is tailored to each person.

Please click this link to find out more about our study and to participate.

As well, a here is a link to our website's vulvodynia resources page.

Emma Dargie, Ph.D. Candidate Caroline F. Pukall, Ph.D., C.Psych.