A young woman with a condition that leaves her genitals “aroused” 24/7 has detailed her daily struggle with it.
Rhode Island native Scarlet Kaitlin Wallen, 21, has persistent genital arousal disorder (PGAD), which causes a constant, painful burning sensation in her private parts.
While most sufferers typically feel a sense of sexual arousal, Ms. Wallen’s condition is more painful than pleasurable.
She has always experienced a tingling sensation in her vulva, saying that it burned constantly: “It was like I was naturally aroused but I didn’t want it.”
He has suffered from it since he was about six years old, when it prevented him from playing outside with his friends because all he wanted to do was curl up in bed.
In 15 years, he has only had a few days without pain and is unable to work or study full time.
Scarlet Kaitlin Wallen, 21, a Rhode Island native, has persistent genital arousal disorder (PGAD), which causes the painful burning sensation in her genitals that she has experienced since childhood.
The condition caused Scarlet’s mental health to deteriorate, leading to severe anxiety and obsessive-compulsive disorder.
But with treatments and surgeries in development all the time, Scarlet is hopeful she can have “a life without PGAD” one day.
PGAD affects about 1 percent of the population, primarily women.
Certain depression medications can trigger depression. Experts believe it could also be because certain nerve fibers in the sexual organs send signals to the brain for no reason, causing arousal.
Wallen, a part-time courier and art student from Barrington, described the pain as “burning bugs under my skin,” and as if her genitals were on fire.
She said: ‘In my brain it was like I don’t want to feel this. “I wanted to play outside.”
When puberty hit at the age of 13, he began experiencing random pain-free days.
He has dealt with pain since he was six years old, when it became too much to bear to go out and play with his friends.
Scarlet underwent surgery to have some nerves removed from her vagina to relieve the constant burning sensation.
But the burning and unwanted arousal would return with a vengeance after a couple of days, and Ms. Wallen would deliberately use a steam massage on her genitals to distract from the unwanted arousal.
It made him break out in rashes, but the burning it caused was better compared to the burning caused by PGAD.
His symptoms began at the age of six, when he began to feel severe, constant tingling in his genitals.
She said: ‘I have been experiencing pain for as long as I can remember. My vulva burned constantly; It was like she was naturally aroused but she didn’t want it.
Her PGAD, along with other conditions such as OCD, meant she became reclusive as a teenager.
He had a hard time making friends because of his anxiety and couldn’t stay around people for long periods of time in case he had a PGAD flare-up.
They even removed some of his genital nerves in an attempt to relieve the pain.
Just before graduating high school in 2020, Wallen visited a doctor for the first time so he could attend college without worrying about his condition.
The stress and pain led to him being diagnosed with severe anxiety and obsessive-compulsive disorder. She became a recluse and her mental health deteriorated.
She said: ‘At 18, I was pretty sure my body was attacking me. So I wrote a letter to my parents.
“I didn’t want to tell him face to face, but the situation was getting so bad that I couldn’t hide it from him anymore.
‘I wrote that I had continuous nerve pain that wasn’t even pain, it was worse. I told them it was something I had no control over.
With the help of her 54-year-old father, an investment banker, she was referred to the San Diego Sexual Medicine Clinic in California.
His doctor was certain that Wallen was experiencing PGAD, along with other sexual dysfunctions, such as numbness in his genitals caused by taking antidepressants.
The doctor also discovered that she suffered from another condition: congenital neuroproliferative vestibulodynia, which means the pelvic nerves are hypersensitive to touch, and Scarlet has suffered from this since birth.
This is believed to have caused PGAD.
In an attempt to discover the cause and the correct treatment, he examined Scarlet for the first time.
But he discovered that she had many complications, including a duplicate vagina, that were not related to her PGAD.
She said: ‘My doctor, Dr Irwin, told me he wanted to do a vestibulectomy, a surgery to remove painful tissue from the vagina. But during the examination they discovered that she had a duplicate.
‘So first, I would need to have the blocked tissue removed from my vagina, which was causing it to split into two parts. “Then I could have the vestibulectomy.”
She had the separated wall of her vagina removed in February 2023 and recovered within a week.
His vestibulectomy was performed the following September, but only parts of the painful tissue were removed, giving him a greater chance of having a “normal” sexual desire in the future.
She said: “I was told there was a strong possibility that I would never be able to feel any kind of natural sexual arousal again if it was taken away completely, due to my post-SSRI sexual dysfunction.”
“I still want to have a sexual relationship, but I currently have to choose between living with PGAD or being completely numb.
“I just have hope that one day I will be able to live a normal life.”