The Reality of Chronic Nerve Pain : An Insight on PGAD

Written by: Gregory Pulis

Edited by: Olivia

Understanding Nerve Pain

Imagine the feeling as if parts of your body are on fire, that even the constant touch of a sleeve may send shooting pains up your arm. Or hundreds of tiny needles stabbing into you but there’s nothing to stop the pain–even a breeze against the skin could hurt. This is what it is like to experience chronic nerve pain, as explained by the Cleveland Clinic which states it could either “wax and wane, or it can be persistent and relentless” within a range of mild to severe, and can impact any area of the body. Aside from the way it affects an individual physically, it could also “have a serious negative impact on your quality of life.” From someone on the outside, they may never know the extent of pain an individual may be feeling, which sometimes leads to dismissive attitudes that could feed into stigmas on the condition. In a world where talk of genitals is already a taboo topic, when nerve pain is affecting that area of the body, it is only more damaging both to treatment and mental health if it is not being discussed. 

Before delving into those negative impacts and discussing stigmas on a particular group of people with neuralgia (nerve pain), it’s important to understand where it comes from. Neuropathic pain is seen to originate from various possible sources, such as diabetes (which makes up about 30% of cases), treatments for cancer (e.g., radiation therapy), spinal nerve compression, or central nervous system disorders (e.g., stroke), among other possible causes (Cleveland Clinic, n.d.). The causes of nerve pain, while varying widely, the majority of them are out of control of the individual, such as from a stroke or needing chemotherapy to get rid of cancer. It holds no argument that wherever it stems from, no one intends to feel this way nor do they want to. 

The Introduction & Background of PGAD/GPD

That idea of it being an unwanted feeling may seem like an obvious statement, but in the case of a smaller, yet stigmatized branch of nerve pain disorders, persistent genital arousal (PGAD) can often be written off as arousing (as the name implies). A patient could even be seen as a “sexual deviant” in a healthcare provider's eyes (Anonymous, 2019). 

PGAD was first described in scientific articles in 2001, and the more recent description of the disorder is “characterized by persistent, unwanted, and distressing sensations of physiological arousal, which are not accompanied by simultaneous sexual desire or interest” (Mooney et al., 2024, p. 2). This has been officially acknowledged for just over 20 years, but that is still fairly new in the world of scientific research, especially since it is hard to get a proper look at how common it is due to the nature of the condition itself. Using the word “arousal” contributes to the dangerous idea that this is pleasurable in any sense. The name has come to include genito-pelvic dysesthesia (GPD) to include a more comprehensive look at this type of nerve pain. It also helps to battle the idea that PGAD constant sexual arousal, as it is “defined as an abnormal, unpleasant sensation where the primary unwanted sensation is arousal.” 

Prevalence rates of PGAD/GPD are thought to be approximately 0.6−2.7% of women, which may also be an underestimate since many of them express embarrassment or shameful feelings about their condition (Jackowich et al., 2021, p. 2). As for men, the reports are even more underrepresented and difficult to get a proper estimate. 

Damaging Stigmas Within Healthcare & Relationships

With the foundation laid out on how painful it is and that it is not within the individual’s control (with exceptions being instances like excessive drinking/alcohol use disorder that the Cleveland Clinic also highlighted), it explains why nerve pain is thought to be linked with depression, and even suicidal idealization. PGAD/GPD is no exception to these feelings of hopelessness, especially when healthcare providers seem either dismissive and/or are unknowledgeable of the disorder. In a study assessing healthcare experiences in folks with PGAD, researchers found that if a PGAD patient didn’t feel comfortable even communicating with their provider, that presented a significant association in each model regarding depression and anxiety (Jackowich et al., 2021, p. 6). With that in mind, among all of the participants in the study, the most common theme (at about 46%) reported on barriers with healthcare professionals was that: “The doctors are not informed about PGAD, and there are few studies related to this” (Jackowich et al., 2021, p. 7). These two factors create a serious roadblock. If there is this stigma against the disorder and it’s not seen as serious, research will be difficult to come by if no one thinks it is important to talk about. 

With no research nor education on PGAD/GPD, in play with various misconceptions, the healthcare providers–the very people meant to help and treat this–may not even think it to be real, or think it is a symptom of something else. As the data shows, this is harmful not only to the person craving physical relief but also to those who are struggling mentally.

A few people with the disorder shared their accounts of experiencing stigma in a set of interviews with the Herald-Tribune. An anonymous individual reported that when talking with doctors, they have been “openly mocked for it,” and wants to make it clear that PGAD is “physically painful, disruptive to our everyday lives and embarrassing. We are not people who have some kind of moral failing, and we're not mentally ill” (2019). Another aspect to remember is that it is not some uncomfortable pain that one must deal with, but that it seriously affects daily life. Whether it be physical pain or a negative mindset, this could interrupt important life events (such as work meetings or even funerals, as the anonymous report mentions), or even our relationships. 

In the context of a relationship, Mooney and colleagues found that catastrophizing was associated with lower levels of relationship adjustment and higher symptom severity, whereas supportive partner responses were associated with higher levels of relationship adjustment. Catastrophizing can be summarized as an “exaggerated negative ‘mental set’ of the PGAD/GPD symptoms; Relationship adjustment is measured based on a questionnaire that assessed how symptoms have impacted various areas, such as intimacy and communication (2024, p. 183, 187). These findings serve as a stepping stone in the process of tackling relationship issues. The significance of catastrophizing on relationship adjustment and symptom severity centers the lens on what needs to be focused on for improvement. 

Of course, tackling catastrophizing will not take away the symptoms, but instead aid in managing the “exaggerated” anxiety or depression that may have been making symptoms worse and putting a wedge in relationship functioning. Oon a more optimistic note, supportive partner responses to the individual with PGAD could assist in navigating any necessary adjustments around the disorder.  

While general nerve pain is certainly a serious issue that further research is needed for treatments–and to highlight the debilitating mental health aspect of the condition–it is important that we break these stigmas against PGAD/GPD as something pleasurable and begin to treat it on the same level as any other neuropathic pain. Additionally, awareness must be spread about the disorder, so that those with it can feel comfortable disclosing to a healthcare provider and get proper treatment, and educate those providers about this realm of nerve pain regarding genitals so that they also can take an active part in being able to spot the disorder and ask the right questions to the patients. Medical training must involve PGAD so that patients cease to be dismissed or misdiagnosed. It is time for society to end this mysterious, taboo air around discussing concerns over genital and sexual health so that people can feel comfortable asking for help to lead more fulfilling, healthy lives. 

References

Anonymous. (2019). Unfamiliar, troubling condition PGAD comes with social stigma. The Herald-Tribune. https://www.heraldtribune.com/story/news/local/2019/04/17/unfamiliar-troubling-condition-pgad-comes-with-social-stigma/5417990007/

Cleveland Clinic. (n.d.). Neuropathic pain. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/15833-neuropathic-pain

Jackowich, R. A., Boyer, S. C., Bienias, S., Chamberlain, S., & Pukall, C. F. (2021). Healthcare experiences of individuals with persistent genital arousal disorder/genito-pelvic dysesthesia. Journal of Sexual Medicine, 9(3), 100335. https://doi.org/10.1016/j.esxm.2021.100335

Mooney, K. M., Mulroy, R., Poirier, É., Pukall, C. F. (2024). Interpersonal Experiences with Persistent Genital Arousal: Connections between Symptom Disclosure, Partner Responses, and Catastrophizing on Relationship Adjustment and Symptom Severity. Journal of Sex & Marital Therapy, 50(2), 182-196. https://doi.org/10.1080/0092623X.2023.2269931