Student, 21, lives with excruciating ‘persistent genital arousal disorder’ that started with ‘pins and needles’
A STUDENT has told of the reality of living with an excruciating condition which leaves her permanently aroused.
Scarlet Kaitlin Wallen was just six-years-old when she began to feel severe and constant “pins-and-needles” in her genitals.
She would later be diagnosed with persistent genital arousal disorder (PGAD) – a condition which causes uncontrollable arousal.
Researchers estimated it may affect one per cent of the population, although not everyone’s symptoms are very severe.
The now 21-year-old has only had a handful of pain-free days, which has left her 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 Rhode Island, US, 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.”
‘Burning bugs under my skin’
Scarlet’s first memories of 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.
I still want to have a sexual relationship – but my choice is currently between living with PGAD or being completely numb
Scarlet Kaitlin Wallen
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.”
Anxiety
Scarlet’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 PGAD flare-up.
What is persistent genital arousal disorder? And what are the symptoms?
PERSISTENT genital arousal disorder (PGAD) is spontaneous, persistent and unwanted genital arousal without any sexual desire or satisfaction.
Multiple orgasms over hours, days or weeks can be agonising for sufferers, offering no relief.
Scientists do not know what causes the condition but suspect neurological, vascular, pharmacological or psychological causes may play a role.
Symptoms can persist for long periods of time and include:
- Pressure
- Pain
- Clitoral throbbing
- Tingling
- Vaginal congestion
- Vaginal contractions
- Spontaneous orgasms
The signs and symptoms can affect the vagina, labia, perineum and anus.
The condition can impact a sufferer’s work and home life, leaving many feeling embarrassed and avoiding sexual relationships.
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.”
Corrective surgery
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 thought this caused the PGAD.
In a bid to find out the cause and correct treatment, the doctor examined Scarlet for the first time.
But he found she had lots of other complications – including a duplicate vagina.
She said: “My clinician, Dr. Irwin, told me he wanted to do a vestibulectomy, which is 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.”
Hope for a normal life
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.”