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Scarlet Kaitlin Wallen, a 21-year-old student from the United States, recently shared her story of coping with one of the rarest medical conditions known as persistent genital arousal disorder (PGAD). It is an agonizing condition that leaves her in a perpetual state of arousal, significantly impacting her life. Scarlet recalls experiencing intense "pins and needles" sensations in her genitals since the age of 6, and by 15, she endured excruciating pain. The condition hindered her ability to work or pursue her studies effectively.

Despite numerous surgeries and treatments, Scarlet remained hopeful of someday living free from PGAD. Scarlet was an art student and also a part-time courier from Barrington, Rhode Island. She said that “I’d been experiencing pain for as long as I remember. My vulva was constantly burning—it was like I was naturally aroused, but I didn’t want it. There’s nerve pain, it’s not wanted, and there’s no pleasure. I’m hopeful I’ll be able to have a painless sexual relationship in my lifetime."

Genital throbbing, tingling, or pulsating feelings, as well as frequent and spontaneous genital arousal—even in the absence of sexual ideas or activities—are possible symptoms.(Image Credit:Canva)

Scarlet also said that when she was 6 years old and PGAD was started, she was also not able to play with other kids. She described her pain as “burning bugs under my skin” and like her genitals were on fire. “In my brain, it was like, I didn’t want to feel this. I wanted to be playing outside.”

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During puberty at 13, Scarlet experienced occasional relief, only for the pain and arousal to return. To cope, she resorted to applying vapor rubs to distract herself from the unwanted sensations, finding temporary relief from the discomfort caused by PGAD.

Scarlet said, “The PGAD on its own was unbearable—and such an odd sensation. I started trying to help it with a vapor rub and found that, at least if it wasn’t treating me, the pain I’d get from it was distracting. I wanted my genitals to burn from that, rather than the PGAD.”

In addition to PGAD, Scarlet also grappled with other health issues, including obsessive-compulsive disorder (OCD), leading her to become socially withdrawn during her teenage years. Despite her struggles, she graduated from high school in 2020 and sought medical assistance to address her health concerns before starting college.

Medication, counseling, pelvic floor exercises, and lifestyle modifications are possible treatments for post-genomic arthritis disease (PGAD) that attempt to manage symptoms and enhance quality of life.(Image Credit:Canva)

She said, “By 18, I was quite certain my body was attacking me,” she added. “So I wrote a letter to my parents. I didn’t want to tell them face-to-face, but it was getting so bad that I couldn’t hide it from them anymore. I wrote that I had this non-stop nerve pain that wasn’t even pain; it was worse. I told them it was something I had no control over.”

With the support of her father, Scarlet was referred to the San Diego Sexual Medicine Clinic, where clinicians identified not only PGAD but also other sexual dysfunctions, including post-SSRI sexual dysfunction and congenital neuroproliferative vestibulodynia. 

To treat her with the correct treatment, her clinician did all the tests, and he also found that Scarlet also has a duplicate vagina, which is totally unconnected to her PGAD. She said, “My clinician, Dr. Irwin, told me he wanted to do a vestibulectomy—a surgery to remove painful tissue from the vagina. But during the examination, they found I had a duplicate. So first, I’d need to have the blocked tissue of the vagina removed—the thing that was causing it to divide into two parts. Then, I could have my vestibulectomy.”

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Following various tests, Scarlet underwent surgery in February 2023 to address the conditions affecting her pelvic nerves and duplicated vagina. In September 2023, Scarlet underwent a vestibulectomy to remove painful tissue from her vagina, providing hope for a more manageable future. However, due to the complexities of her condition, Scarlet faces uncertainty regarding her ability to experience natural sexual arousal in the future.

At last, Scarlet said, “I was told there was a significant possibility I wouldn’t be able to feel any sort of natural sexual arousal again if I had all of it removed—due to my post-SSRI sexual dysfunction. I still want to have a sexual relationship, but my choice is currently between living with PGAD or being completely numb. I’m just hopeful that one day I’ll be able to live a normal life.”