Medics have sought to raise awareness of a rare condition that causes genital ‘tingling’ and triggers spontaneous orgasms throughout the day without sexual contact.
In a new case report, a team of Turkish neurologists warned that patients often face delays in diagnosis, because they’re referred to the wrong specialists.
The condition, called restless genital syndrome (RSG) or persistent genital arousal disorder (PGAD), is thought to be caused by misfiring in brain signals that control nerves in the genital area.
It is rare, thought to affect just one per cent of people globally, most of which are women.
Patients report feeling permanently on the verge of an orgasm that they can’t complete without sexual desire or stimulation.
Some say they feel tingling, burning, or pain, according to the report, published in the journal Cureus.
It’s considered similar to restless leg syndrome (RLS), with some doctors classing it as an ‘atypical’ form of the condition.
The medics, Buse Cagla Ari and Elifnaz Sahin from Bahçeşehir University in Istanbul, tell of the experience of a patient — a 35-year-old woman who sought medical help after experiencing persistent numbness and tingling in her genitals for six months.
One patient who suffered the condition is Scarlet Wallen, who has experienced the sensations since she was about six years old, when it prevented her from playing outside with friends.
At first, she only felt the tingling feeling only affected her groin, but it gradually spread to her right and left extremities.
She described these sensations as a sharp unpleasant pain, which could be relieved by moving her legs.
At first, her symptoms worsened before going to bed and occurred consistently after periods of rest. But they then began occurring during the day.
She reported spontaneous sexual arousal and orgasms throughout the day — which caused challenges in her professional life.
The neurologists reported that several tests including an ultrasound and blood tests came back ‘normal’ and did not explain her symptoms.
After further examination, the doctors concluded she had restless genital syndrome, and prescribed a drug called pramipexole, which affects the brain hormone dopamine, which is responsible for movement.
Following some dosage adjustment, the patient’s symptoms resolved.
One woman who has previously spoken out about her experience of the condition is 21 year-old student Scarlet Kaitlin Wallen from Rhode Island in the US.
In an interview given earlier this year, she said she’d ‘always’ experienced a ‘pins and needles’ feeling in her vulva, admitting that it was constantly burning: ‘It was like I was naturally aroused but I didn’t want it.’
The Rhode Island native has only had a handful of pain-free days over the last 15 years.
In 15 years, she’s only had a handful of pain-free days — and is unable to work or study full-time.
Ms Wallen, a part-time courier and art student, described the pain as ‘burning bugs under my skin’ — and like her genitals were on fire.
She said: ‘In my brain it was like, I didn’t want to feel this. I wanted to be playing outside.’
She underwent surgery to have some nerves in her vagina removed to alleviate the constant burning feeling.
Other women with the condition have described the orgasms they experience as ‘an intense pleasure’ that can ‘end up causing me pain’.
In a recent post shared on Reddit, one sufferer said the sensation is ‘strongest in my cervix area.’
The woman said: ‘For me it’s not sudden but it’s a slow build up, and the build up doesn’t always end in an orgasm, so I never truly know if I’m going to have an orgasm.
‘But just that alone makes me order groceries to my front door.
‘It’s intense pleasure that if it does end up causing me pain, it makes me nauseous and the nausea makes me more fearful or upset than the pain because I hate throwing up.’
On a ‘good day,’ she deals with about three to five orgasms. But on a bad day, that number can be as high as 25. The highest number she’s suffered in a day is 50.
Sitting up suddenly also makes her more prone to an orgasm, possibly due to pressure on her genitals. The woman added that she avoids masturbating to keep from intensifying the sensations.
Some experts have suggested that varicose veins in the pelvis, cysts along the base of the spine, and abscesses near the clitoris could be partly to blame.
One 2020 study by Harvard Medical School studied 10 patients with the condition and found nine of them had lesions on or problems with the lower spinal cord or nerves that controlled sexual arousal and orgasm.
Study authors explained the dorsal nerve, which has roots in the spinal cord and travels to the genitals, largely controls sensation to the clitoris or penis.
It explained anything which puts pressure on a nerve or interrupts the flow of electrical signals can cause unwanted effects by triggering uncontrollable signals to and from the brain.
Tarlov cysts, most commonly found at the base of the spine around the nerve roots, were the most common problem found in the study.
The fluid-filled lumps can damage nerves by putting pressure on them, affecting sexual, bladder and bowel function.
