By Hannah Van De Peer
A student has told of the reality of living with an excruciating condition which leaves her permanently aroused – and has ruined her life.
Student Scarlet Kaitlin Wallen, 21, has persistent genital arousal disorder (PGAD) – a condition which causes uncontrollable arousal.
Her symptoms started at the age of six – when she began to feel severe and constant “pins-and-needles” in her genitals.
In 15 years, she’s only had a handful of pain-free days – and she’s unable to work or study full-time.
But with treatments and surgeries being developed all the time Scarlet remains hopeful she’ll be able to have “a life without PGAD” one day.
She has even had some of her genital nerves removed in a bid to numb the pain.
Scarlet, a part-time courier and art student from Barrington, Rhode Island, said: “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.”
Scarlet says her PGAD started when she was six years old – and it would stop her from playing out with her friends.
She described the 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,” she added. “I wanted to be playing outside.”
When puberty hit at the age of 13, she started experiencing random days without pain.
But the burning and unwanted arousal would come back with a vengeance after a couple of days – and Scarlet would deliberately use vapour rub on her genitals to distract from the unwanted arousal.
Chemicals in the rub would give her severe thrush – but she found the “rawness and burning” more tolerable than the pain from PGAD.
She said: “The PGAD on its own was unbearable – and such an odd sensation.
“I started trying to help it with vapour 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.”
Scarlet’s PGAD, alongside other conditions like OCD, meant she became reclusive as a teen.
She struggled to make friends due to her anxiety – and couldn’t stay around people for long periods of time in case she had a PGAD flare-up.
Just before graduating from high school, in 2020, Scarlet saw a doctor for the first time so she could attend college without worrying about her condition.
“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 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 help of her dad, 54, an investment banker, Scarlet was referred to the San Diego Sexual Medicine Clinic in California.
Her clinician was certain Scarlet was experiencing PGAD alongside her other sexual dysfunctions, like post-SSRI sexual dysfunction – numbness in the genitals caused by antidepressants.
He also found she was suffering from another condition – congenital neuroproliferative vestibulodynia – which means the pelvic nerves are hypersensitive to touch, and Scarlet has been suffering from this since birth.
It’s believe this caused the PGAD.
In a bid to find out the cause and correct treatment, he examined Scarlet for the first time.
But he found she had lots of complications – including a duplicate vagina.
It is 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.”
In February 2023, Scarlet had her septate vagina wall removed – and only took a week to recover.
Her vestibulectomy took place on September 8, 2023 – but she only had parts of the painful tissue removed, giving her a greater chance of having a “normal” sex drive in the future.
She added: “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.”
This is Premium Licensed Content. Would you like to publish this article? Please contact our licensing team.
