Medics have been trying to raise awareness about a rare condition that causes genital “tingling” and triggers spontaneous orgasms all day long without sexual contact.
In a new case report, a team of Turkish neurologists warned that patients often face delays in diagnosis because they are referred to the wrong specialists.
The condition, called restless genital syndrome (RSG) or persistent genital arousal disorder (PGAD), is thought to be caused by an error in the brain signals that control the nerves in the genital area.
It is rare; It is thought to affect only one percent of people worldwide, most of whom are women.
Patients report feeling permanently on the verge of an orgasm that they cannot complete without sexual desire or stimulation.
Some say they feel tingling, burning or pain, according to the report published in the journal Cureus.
It is considered similar to restless leg syndrome (RLS), with some doctors considering it an ‘atypical’ form of the condition.
The physicians, Buse Cagla Ari and Elifnaz Sahin from Istanbul’s Bahçeşehir University, share the experience of one patient: a 35-year-old woman who sought medical attention after experiencing persistent numbness and tingling in her genitals for six months.
One patient who suffered from 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 felt the tingling sensation only affecting 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.
Initially, her symptoms worsened before going to bed, and they occurred persistently after periods of rest. But then they started happening during the day.
She reported spontaneous sexual arousal and orgasms throughout the day, which posed challenges in her professional life.
The neurologists reported that various tests, including an ultrasound and blood tests, were ‘normal’ and did not explain her symptoms.
After further examination, the doctors concluded that she had restless genital syndrome, and prescribed a drug called pramipexole, which affects the brain hormone dopamine, which is responsible for movement.
After some dose adjustment, the patient’s symptoms resolved.
One woman who has previously spoken out about her experience with the condition is 21-year-old student Scarlet Kaitlin Wallen from Rhode Island in the US.
In an interview earlier this year, she said she had “always” experienced a tingling sensation 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 had only a handful of pain-free days over the past fifteen years.
In fifteen years, she has had only a handful of pain-free days and cannot work or study full-time.
Ms Wallen, a part-time courier and art student, described the pain as “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.’
She underwent surgery to remove some nerves in her vagina to relieve the constant burning sensation.
Other women with the condition have described the orgasms they experience as “an intense pleasure” that “can eventually cause me pain.”
In a recent post shared on Reddit, one patient said the feeling is ‘strongest in my cervical 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 really know if I’m going to have an orgasm.
‘But that alone makes me order groceries to the front door.
“It’s an intense pleasure that when it finally gives me pain, it makes me nauseous and the nausea makes me more anxious or upset than the pain, because I hate throwing up.”
On a ‘good day’ she has about three to five orgasms. But on a bad day that number can go up to 25. The most she has experienced in one day is 50.
Sitting upright makes her suddenly more sensitive to an orgasm, possibly due to pressure on her genitals. The woman added that she avoids masturbating so as not to intensify the sensations.
Some experts have suggested that varicose veins in the pelvis, cysts along the base of the spine, and abscesses near the clitoris may be partly to blame.
A 2020 study by Harvard Medical School studied 10 patients with the condition and found that nine of them had lesions or problems with the lower spinal cord or the nerves that controlled sexual arousal and orgasm.
The study authors explained that 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 that anything that 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, usually 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 the nerves by putting pressure on them, affecting sexual, bladder and bowel function.