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.

Can you feel super turned on ‘down there’ when you are not at all ‘in the mood’? Yes. And it is called Persistent Genital Arousal Disorder

When we think of sexual arousal, we typically think of something that is primarily pleasant and enjoyable. When we are sexually aroused (or ‘turned on’), we think sexy thoughts, we see sexiness all around us, and we experience delightful sensations in certain parts of our bodies. Everything seems to jive, and this combination of events can make us feel alive and alert. However, this is not the case for everyone, in particular when genital arousal is persistent and unwanted. “What?” you might be asking yourself right now. The process is more complicated than many think. Sexual arousal is actually made up of at least two components, which can (but do not always) occur at the same time. Genital (or what us sex researchers sometimes call physiological) sexual arousal includes feelings of the physical changes that occur when the body is oh-so anticipating sexual activity (e.g., genital fullness or swelling, sensitivity, and/or lubrication—all those sensations ‘down there’ and in other sensitive places). On the other hand, subjective sexual arousal refers to one’s perception of whether they are sexually aroused, ‘turned on’, or ‘in the mood.’ Although subjective and genital arousal typically occur at the same time, sometimes they do not. One striking example of this is when people have what is called Persistent Genital Arousal Disorder (or PGAD). PGAD occurs when only the physical component of sexual arousal is present; that is, an individual’s genitals are excited, but they don't feel in the mood. In fact, individuals are quite bothered by the genital feelings because the physical sensations simply don't go away. Even after an orgasm. Even after many orgasms. Instead of that satisfying feeling that one gets after the intense release of any orgasm, all that women with PGAD may feel after an orgasm are more messages from their genitals telling them to ‘go’ again. And these genital feelings—as you can imagine—are tiresome and bothersome because they simply won’t go away! There is no final release… And they can happen at any time without anything triggering them! Like when you are riding in a car, or travelling on a plane—those vibrations from the car or plane can unfortunately trigger orgasms. Yes, I said ‘unfortunately’ and ‘orgasm’ in the same sentence because the orgasms are unwanted and are not pleasurable. So they are not really ‘orgasms’ as you may think. Talk about a limiting condition; many people with PGAD cannot travel or even work outside of the home due to these symptoms. In this condition, there seems to be miscommunication between the mind and body, in that the body (the genitals) is stuck in this loop of being ‘turned on’ all or most of the time. Although having persistent genital arousal might sound appealing to you at first on account of the tingling genital sensations and orgasms, individuals with PGAD find their symptoms very distressing.

We still don’t know exactly how many women (or men, see below) have PGAD. It is safe to assume that it is more common than one might think. It’s too bad that some women who have the resolve to talk to their doctor about this issue get laughed out of the office (“you are so lucky!” “you have no trouble achieving orgasm!”) or mistakenly diagnosed with something called hypersexuality (which is a condition characterized by high desire/subjective arousal, which remember, is NOT what PGAD is about). Women with PGAD and hypersexuality might sound the same when you hear that both groups engage in a high amount of sexual behavior(s), but the reasons for this high level differs: women with PGAD might be trying to get rid of their feelings of incessant arousal, and women with hypersexuality are acting on their desire to be sexual. The literature is also quite haphazard when it comes to successful treatment for PGAD. Some recommend treatments like zapping your brain with shock therapy (no, this is not a joke) or surgery to get rid of cysts located close to the spinal cord.

As mentioned earlier, PGAD can also affect men as well, but very little research attention has been given to these men. This topic is one area of current research that our SexLab team at Queen’s is focusing on. We feel that it is important to raise awareness about persistent genital arousal so that individuals who do experience the unwelcome and unwanted sexual sensations will be taken seriously.

Queen’s Sexual Health Research Lab: Addressing the Need for More Research

We just launched an online study of women’s experiences with PGAD. We are looking for women who are experiencing any symptoms of persistent genital arousal, including those who are and are not distressed by these symptoms. Although we are currently only recruiting women, we will be launching a study for men in the near future as well.

If you are interested in participating, would like to be notified when the male survey is launched, or would like more information, please contact: Sex.Lab@Queensu.ca

To participate in the survey for women with persistent genital arousal symptoms please visit our Participate page.

Robyn Jackowich BA, MSc Student and Caroline F. Pukall, Ph.D., C.Psych.