Some of you might be reading this and be confused. “You can’t have too much of a good thing” … right? How can feeling too turned on “down there” be a bad thing? And how can it be bad for my relationship if I feel, or my partner feels, this way? If my partner experienced this, it would probably mean that they would always be “in the mood”, right? How could that be bad?
From the outside looking in, having genitals being always “turned on” might not seem that bad. But, it is actually an extremely distressing and poorly understood condition that often has a negative impact on well-being and day-to-day functioning. The condition is called persistent genital arousal disorder (or PGAD, for short; see our blog on PGAD for more information). One of the most distressing parts of PGAD is that there is a mismatch between the sensations experienced in your genitals and what’s going on inside your head. In other words, your genitals are in the mood but your mind is not. It is thought that PGAD affects approximately 1% of the population[1, 2], and those with PGAD report experiencing high levels of depression, anxiety, and even suicidal ideation [3-9]. Despite the negative impact of this condition on mood and well-being, surprisingly little research has focused on it.
One area that, until recently, had not been studied is how this condition affects romantic relationships. People with other sexual difficulties (like genital pain conditions (see our blog on Vulvodynia), low sexual desire/interest, or erectile difficulties) often report feeling less satisfied with their romantic and sexual relationships than others who don’t have these sexual difficulties[10-19]. When studying a sample of individuals with distressing symptoms of persistent genital arousal (PGA), we found the exact same trend: people with PGA experience lower relationship and sexual satisfaction, higher levels of sexual distress, and more symptoms of anxiety and depression compared to those who do not have this condition. In addition, people with this condition report that it negatively affects their relationship in a number of ways. For example, in this recent study, many participants felt that aspects of their physical, emotional, and sexual intimacy were either ‘somewhat’ or ‘much’ worse as a result of their persistent genital arousal symptoms. These findings make sense, because nearly 2/3 of the sample also said that they avoid sexual activities with their partner in order to prevent their symptoms from being triggered.
So, even though it might seem like having persistent genital sensations could be a positive thing, data from this recent research study strongly suggests otherwise.
Another topic missing from PGAD research is predictors of better relationship adjustment among those with PGA. Once again, research from other sexual difficulties suggest that a number of factors can either improve or hinder relationship satisfaction among those with sexual difficulties; things like the way a partner responds when you’re experiencing symptoms, your level of sexual communication with your partner, and the degree to which you catastrophize about your symptoms (side note: symptom catastrophizing is a pattern of thinking about pain or genital sensations that could involve ruminating over symptoms, and feeling helpless in response) [20-24]. In this same recent sample of those with distressing symptoms of PGA, we also found that having a romantic partner that responds in a supportive way (for example, by encouraging adaptive coping with the symptoms) was associated with better relationship adjustment, and that having lower levels of catastrophizing was also associated with better overall relationship adjustment.
This research is important for several reasons:
First, we still don’t have a go-to, agreed upon treatment for PGAD. Researchers and clinicians are still trying to figure out effective treatments for this condition that both (1) improve symptoms, and (2) decrease distress and level of impairment. There is a clear need to continue research into areas that could help develop these treatments. The results of this recent research provide some initial support to suggest that catastrophizing and supportive partner responses may be two avenues to direct attention to help improve relationship outcomes among those with PGA.
Second, PGAD is just beginning to be recognized by diagnostic classification systems. Having a condition and its symptoms included in a diagnostic manual can make it easier for healthcare providers to take a condition seriously, can facilitate communication within medical and healthcare communities, and can help formulate plans of care. Research in this area is continuously needed in order to increase the likelihood that this condition will be recognized in future diagnostic manuals. Some good news is that the International Society for the study of Women’s Sexual Health (also called ISSWSH) put together an expert panel of researchers in the field of women’s sexual dysfunctions; this expert panel came up with a formal definition for PGAD (see article here) . In addition, the term “persistent genital arousal in women” will be added to the forthcoming version of the International Classification of Diseases, 11th Revision (ICD-11; World Health Organization, forthcoming), which is scheduled to be released in January of 2022. We hope that men and other gender identities will also be included, and we look forward to seeing if any diagnostic symptoms are added to the term in the ICD-11.
Finally, the stigma surrounding this condition, and the levels of shame that patients experience, is very high. Many individuals – including healthcare providers26 – don’t fully understand the condition, or even know what it is. This lack of knowledge and misinformation can lead people to make unwelcome jokes about the condition26, which only serves to invalidate patient experiences and perpetuates the shame. Shedding more light on poorly understood conditions (like PGAD), and on the ways that they can impact various aspects of well-being, can further validate patient experiences and – hopefully – bring about more social awareness into debilitating and distressing conditions.
For more information, visit our PGAD Frequently Asked Questions page.
Kayla Mooney, MSc
This blog is a summary of Kayla Mooney’s Master’s thesis research. Kayla is a first-year PhD student in the Sexual Health Research Lab.
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26. Jackowich, R. A., Bienias, S., Chamberlain, S., & Pukall, C. F. (in preparation). Healthcare experiences of individuals with persistent genital arousal disorder.