What Is PGAD, the Medical Disorder That Caused Perpetual Arousal in a US Woman?

A 21-year-old American student named Scarlet Kaitlin Wallen recently described her experience living with persistent genital arousal disorder (PGAD), one of the rarest medical diseases. It is an excruciating ailment that severely affects her life and keeps her in a constant state of arousal. Scarlet remembers having “pins and needles” in her genitalia from the time she was six years old, and by the time she was fifteen, the agony was unbearable. Her inability to work and adequately pursue her education was caused by the ailment.

Even after several procedures and therapies, Scarlet never gave up hope that she would one day be free of PGAD. In addition to studying painting, Scarlet worked as a courier part-time, coming from Barrington, Rhode Island. “I’ve been in pain for as long as I can remember,” the woman said. It seemed like I was inherently aroused, but I didn’t want my vulva to burn all the time. It’s unwanted, there’s nerve anguish, and there’s no pleasure. I’m hoping that one day I’ll be able to engage in sexual activity without experiencing any agony.”

Possible symptoms include frequent and spontaneous genital arousal, even in the absence of sexual thoughts or activities, and throbbing, tingling, or pulsing sensations in the genitalia.(Photo Source: Canva)

Scarlet said that she was unable to play with other children when PGAD first began when she was six years old. She felt as if her genitalia were on fire and that there were “burning bugs under my skin.” “It was like, I didn’t want to feel this,” in my mind. I was hoping to be outdoors and having fun.

Scarlet had brief periods of reprieve throughout her puberty at the age of thirteen, but the discomfort and excitement would soon return. She turned to using vapor rubs as a coping mechanism to divert her attention from the unpleasant feelings and provide some respite from the pain brought on by PGAD.

“The PGAD on its own was unbearable—such an odd sensation,” Scarlet said. When I began giving it vapor rubs in an attempt to help, I discovered that the agony I would experience from them was at least diverting if they weren’t curing me. Instead of the PGAD, I wanted my genitalia to burn from that.

Scarlet struggled with obsessive-compulsive disorder (OCD) in addition to PGAD, which caused her to withdraw socially throughout her adolescent years. She overcame her obstacles to graduate from high school in 2020 and get medical attention for her health issues before enrolling in college.

Post-genomic arthritis disease (PGAD) may be treated with medication, counseling, pelvic floor exercises, and lifestyle changes in an effort to control symptoms and improve quality of life.(Photo Source: Canva)

“By the age of 18, I was pretty sure my body was attacking me,” she said. I thus penned a letter to my parents. It was becoming so awful that I was unable to keep it a secret from them, even though I didn’t want to tell them directly. In my writing, I described having constant nerve agony that wasn’t even discomfort—rather, it was worse. I informed them that it was beyond my control.

Scarlet was sent to the San Diego Sexual Medicine Clinic with her father’s assistance, where the doctors diagnosed her with post-SSRI sexual dysfunction and congenital neuroproliferative vestibulodynia in addition to PGAD.

Scarlet’s physician performed all the necessary tests to determine the best course of action for her, and in the process, he discovered that she had a duplicate vagina that has nothing to do with her PGAD. Her doctor, Dr. Irwin, informed her that he intended to do a vestibulectomy, which is a surgical procedure to remove uncomfortable tissue from the vagina. However, they discovered that I had a duplicate when they examined me. Therefore, I would first need to have the vagina’s obstructed tissue—what was causing it to split into two parts—removed. I could then get a vestibulectomy.

Scarlet had surgery in February 2023 to treat the issues affecting her pelvic nerves and duplicate vagina after undergoing a number of tests. With the expectation of a more tolerable future, Scarlet had a vestibulectomy in September 2023 to remove uncomfortable tissue from her vagina. But Scarlet’s situation is so complicated that she’s not sure whether she’ll ever be able to feel genuine sexual excitement again.

Finally, Scarlet said, “I was informed that, because of my post-SSRI sexual dysfunction, there was a good chance I wouldn’t be able to experience any kind of natural sexual excitement again if I had all of it removed. I still want to be in a sexual relationship, but right now I have to choose between being totally numb and living with PGAD. All I want is to be able to have a regular life at some point.