A student has shared the reality of living with an excruciating condition that leaves her permanently aroused – saying it has ruined her life.
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 genitalia.
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, Ms Wallen remains hopeful she’ll be able to have “a life without AD” one day.
She has even had some of her genital nerves removed in a bid to numb the pain.
Ms Wallen, a part-time courier and art student from Barrington, Rhode Island in the US, said she’d “been experiencing pain for as long as I (can) remember”.
“My vulva was constantly burning – it was like I was naturally aroused but I didn’t want it,” she explained.
“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.”
Ms Wallen said her PGAD started when she was six – and it would stop her from playing with her friends.
She described the pain as “burning bugs under my skin”, and like her genitalia 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 Ms Wallen would deliberately use vapour rub on her genitalia to distract from the latter sensation.
Chemicals in the rub would then give her severe thrush – but she found the “rawness and burning” more tolerable than the pain from PGAD.
“The PGAD on its own was unbearable – and such an odd sensation,” she said.
“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 genitalia to burn from that, rather than the PGAD.”
Ms Wallen’s PGAD, alongside other conditions like obsessive compulsive disorder (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 flare-up.
Just before graduating from high school in 2020, Ms Wallen 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 said.
“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, an investment banker, Ms Wallen was referred to the San Diego Sexual Medicine Clinic in California.
Her doctor was certain that Ms Wallen was experiencing PGAD alongside her other sexual dysfunctions, like post-SRRI sexual dysfunction – numbness in the genitalia 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 Ms Wallen has been suffering from this since birth.
It’s believed this caused her PGAD.
In a bid to find out the exact cause and correct treatment, he examined Ms Wallen for the first time. But he found she had lots of complications – including a duplicate vagina.
It is unconnected to her PGAD.
“My clinician, Dr Irwin, told me he wanted to do a vestibulectomy – a surgery to remove painful tissue from the vagina,” Ms Wallen said.
“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, Ms Wallen 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.
“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,” Ms Wallen said.
“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.”