Student, 21, reveals burden of living with condition that leaves her constantly agitated: ‘It has ruined my life’
A young woman with a condition where her genitals are ‘stimulated’ 24/7 has detailed her daily battle with it.
Rhode Island native Scarlet Kaitlin Wallen, 21, has persistent genital arousal disorder (PGAD), which causes a nonstop painful, burning sensation in her genitals.
Although most patients typically feel a sense of sexual arousal, Ms. Wallen’s condition is more pain than pleasure.
She has always had a tingling sensation in her vulva and said it burned constantly: “It was like I was naturally aroused, but I didn’t want it.”
She has suffered from it since she was about six years old, when it prevented her from playing outside with friends because all she wanted to do was crawl into bed.
In fifteen years, she has had only a handful of pain-free days and cannot work or study full-time.
Rhode Island native Scarlet Kaitlin Wallen, 21, 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 and led to severe anxiety disorders and obsessive-compulsive disorder
But as treatments and surgeries continue to be developed, Scarlet remains hopeful that one day she will be able to live “a life without PGAD.”
PGAD affects about 1 percent of the population, mainly women.
Certain depression medications can cause this. Experts believe it could also be caused by certain nerve fibers in the genitals sending signals to the brain for no reason, causing arousal.
Ms Wallen, a part-time courier and art student from Barrington, described the pain as “like burning insects under my skin” – as if her genitals were on fire.
She said: ‘In my head it was like I didn’t want to feel this. I wanted to play outside.’
When she entered puberty at age 13, she started experiencing random days without pain.
She has been dealing with the pain since she was six, when it would become too unbearable for her to go outside and play with her friends.
Scarlet underwent surgery to remove some nerves in her vagina to relieve the constant burning sensation
But the burning and unwanted arousal returned with a vengeance after a few days – and Ms Wallen deliberately used vapor rub on her genitals to distract from the unwanted arousal.
It caused her to develop a rash, but the burn from that was better compared to the burn caused by PGAD.
Her symptoms began at the age of six, when she began to feel severe and persistent tingling in her genitals.
She said: ‘I have experienced pain for as long as I can remember. My vulva burned constantly. It was like I was naturally excited, but I didn’t want to be.”
Her PGAD, along with other conditions such as OCD, caused her to withdraw as a teenager.
She had trouble making friends because of her anxiety — and couldn’t stay around people for long periods of time in case she had a PGAD flare-up.
She even had some of her genital nerves removed in an attempt to numb the pain.
Just before graduating from high school in 2020, Ms. Wallen visited a doctor for the first time so she could attend college without worrying about her condition.
The stress and pain had led to her being diagnosed with severe anxiety and obsessive-compulsive disorder. She became a recluse and her mental health deteriorated.
She said: ‘When I was 18 I was pretty sure my body was attacking me. That’s why I wrote a letter to my parents.
‘I didn’t want to tell them in person, but it got so bad that I couldn’t hide it from them anymore.
‘I wrote that I had a persistent nerve pain that was not even pain, but worse. I told them it was something I had no control over.”
With the help of her father, 54, an investment banker, she was referred to the San Diego Sexual Medicine Clinic in California.
Her doctor was certain that Ms. Wallen was suffering from PGAD, in addition to other sexual dysfunctions, such as numbness in the genitals caused by the use of antidepressants.
The doctor also discovered that she suffered from another condition: congenital neuroproliferative vestibulodynia, which means that the pelvic nerves are hypersensitive to touch, and Scarlet has suffered from this since birth.
This is believed to have caused the PGAD.
In an attempt to determine the cause and the correct treatment, he examined Scarlet for the first time.
But he discovered she had many complications, including a double vagina, that were unrelated to her PGAD.
She said: ‘My doctor, Dr. Irwin, told me he wanted to do a vestibulectomy – an operation to remove painful tissue from the vagina. But during the investigation they discovered that I had a duplicate.
‘So first I would have to have the blocked tissue of the vagina removed – the thing that caused it to be divided into two parts. Then I could have my vestibulectomy.”
She had her separate vaginal wall removed in February 2023 and recovered within a week.
Her vestibulectomy took place the following September, but only parts of the painful tissue were removed, giving her a greater chance of a ‘normal’ sex drive in the future.
She said: ‘I was told that if I had it all removed, there was a good chance that I would no longer be able to feel any form of natural sexual arousal – due to my post-SSRI sexual dysfunction.’
“I still want to have a sexual relationship, but my choice right now is between living with PGAD or being completely numb.
“I’m hopeful that one day I’ll be able to live a normal life.”