Focusing on healthcare experiences of those with a poorly understood and managed condition: Persistent genital arousal disorder

Visiting the doctor can be an anxiety-provoking experience for many people, especially when someone wants to confide in their doctor about something personal. In addition, medical care can leave quite the hole in one’s bank account, depending on how far they have to travel, or how their country covers healthcare (public versus private). At the Sexual Health Research Lab at Queen’s University, we are interested in understanding how different healthcare experiences, such as interactions with doctors and/or costs associated with treatments, affect individuals with sexual health concerns. Specifically, we are interested in better understanding the healthcare experiences of individuals with a not-very-well understood condition called Persistent Genital Arousal Disorder, or PGAD.

You might be asking yourself ‘what is PGAD’? See here for some info: (http://www.queensu.ca/sexlab/wordpress/?tag=pgad).

Individuals with PGAD experience the physical component of sexual arousal – sensitivity and/or swelling in their genitals - but they don’t feel turned on in their heads, or in other words – they don’t feel ‘in the mood’. Actually, individuals with PGAD are typically distressed by their physical sensations as they often occur constantly or at inopportune times, like at work or while travelling. Unfortunately, these genital sensations don’t subside on their own – sometimes not even with one or more orgasms. This condition can affect individuals of all sexual and gender expressions; however, most scientific literature on the condition (although there isn’t very much literature!) pertains to PGAD in female-bodied individuals. When it comes to treatment of PGAD, we have yet to identify any truly successful methods, although some recommended symptom management strategies include things like surgery to get rid of cysts located at the spine, or topical creams that may only provide temporary relief - if any. For individuals with PGAD there appears to be a persistent miscommunication between the mind and the body, in that the body is stuck in a state of physical arousal all or most of the time—while, at the same time, the mind is left out of the equation. Many healthcare professionals have never heard of PGAD (it was only formally described in the clinical literature in 2001), and of those that have, many try various different regimens. You can see how healthcare experiences can range from one person to another, and how the costs of such experiences might differ.

In 2014, Canadian healthcare costs accounted for 10% ($215.8 billion CAD) of its gross domestic product, and an average of $5,543 (CAD) was spent per person on healthcare. There is evidence to show that other gynecological concerns such as vulvodynia (or experiencing chronic pain at the vulva), results in an inflated cost to the individual ($8,800 USD in just six months!), and to society as a whole when you take into account the prevalence (3-7%) of the condition. The estimated national economic burden of vulvodynia on the United States is 31 to 72 billion US dollars. Depending on where someone lives, one can imagine the expenses associated with insurance payments, transportation, and work-related financial loss – if one’s symptoms causes them to have to take days off of work. In terms of empirical research, there has yet to be any investigation of the costs of PGAD.

One of the goals of our research here at the Sex Lab is to better understand the types of experiences that individuals with PGAD have while seeking information about and treatment for their PGAD symptoms. Information about the costs associated with accessing health care for PGAD, interactions with health care providers, and barriers to seeking health care may help to inform more efficient and effective care for this distressing condition. We are looking for individuals who are currently experiencing symptoms of persistent genital arousal, including those who are and are not distressed by these symptoms to complete a survey about their healthcare experiences. Participation includes the completion of a 30-minute online survey, and you must be 18 years of age or older and fluent in English in order to participate.

If you are interested in participating or would like more information, please contact: sex.lab@queensu.ca

Or visit the survey here: https://queensu.qualtrics.com/jfe/form/SV_eM6nmtjldW6gwMl

Sam Bienias, BScH Student, Queen’s University

Robyn Jackowich, MSc, and Caroline F. Pukall, PhD, C.Psych.