Persistent Genital Arousal Disorder/Genito-Pelvic Dysesthesia (PGAD/GPD) is a condition characterized by persistent, unwanted, and intrusive feelings of genital arousal that are not related to sexual desire. Symptoms may include lubrication, tingling, throbbing, and swelling of the genitals, and/or the feeling of being on the verge of orgasm. These sensations might be constant, or they may come and go, lasting for hours to days at a time.

For patients experiencing PGAD/GPD symptoms, seeking treatment can be a daunting task. Compared to many other sexual dysfunctions, there is relatively little empirical data on PGAD/GPD, and as such, limited training is available to health care providers on its causes, diagnosis, and treatment options. Furthermore, PGAD/GPD patients may feel embarrassed or ashamed of their symptoms, leading to their reluctance to discuss them with health care professionals.

The authors of a recent Sexual Medicine Open Access study developed a cross-sectional self-report questionnaire for individuals experiencing PGAD/GPD symptoms to take a closer look at their healthcare experiences. They sought to assess potential barriers to care, the financial costs related to PGAD/GPD healthcare, and the association between one’s healthcare experience and their psychosocial outcomes.   

A total of 113 individuals with PGAD/GPD symptoms completed the online questionnaire. Here is what the researchers found:

• Over one-third (39.8%) of the participants waited at least six months before seeking care for their PGAD/GPD symptoms.
• Some of the participants (16.8%) disclosed that they had never sought care for their symptoms.
• Overall, 56.6% of the participants reported a delay of at least six months in seeking care for their symptoms or never having sought care for their symptoms at all.
• Of the individuals who did seek care for their symptoms, 67% received a formal PGAD/GPD diagnosis, and 20.4% did not receive this diagnosis until at least a year after their first medical consult.
• Many of the people who sought medical attention for their symptoms reported meeting with multiple health care providers. Of the total number of participants, 46% reported discussing their symptoms with at least six different health care providers (including primary care doctors, physical therapists, and psychologists).
• The participants’ ratings of health care provider knowledge on PGAD/GPD and their overall satisfaction with their healthcare experiences were generally low.
• The majority of the participants estimated spending up to $100 a month on PGAD/GPD healthcare (including direct costs like insurance and out-of-pocket payments and indirect costs like transportation expenses and unpaid leave from work).
• A lower comfort level for discussing PGAD/GPD symptoms with a health care provider was associated with higher depression and/or anxiety scores for the participants in this study.

Notably, the authors discovered several barriers to seeking care for PGAD/GPD patients through an open-ended question on the matter. The most commonly reported barriers to care were a lack of knowledge about PGAD/GPD in the medical community, a lack of understanding about the psychological and physical impacts of PGAD/GPD, and the participants’ own embarrassment or shame about their condition.

Expanding research on PGAD/GPD and improving resources for both health care providers and patients could go a long way in addressing these barriers to care, reducing the stigma around the disorder, and ultimately improving the healthcare experiences of those who are suffering from this distressing condition.

Resources:

• 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. Sexual Medicine Open Access, 9(3), 100335. DOI: https://doi.org/10.1016/j.esxm.2021.100335.