You might think that being in a state of continual genital and clitoral arousal sounds pretty enjoyable, but for people with restless genital syndrome (RGS) the reality is quite different.
For starters, it doesn’t actually feel like the type of arousal you get when you’re turned on. “RGS is a syndrome characterized by unwanted and unprovoked discomfort in the genital area,” Camila Aquino, MD, a neurologist and movement disorder specialist, tells Health. And the symptoms aren’t generally ones you want to experience when you’re in the throes of sexual desire. “They can be hard to describe,” Dr. Aquino says. “People who are affected by RGS often describe it as pain, numbness, vibration, restlessness or a burning sensation.”
These sensations may involve the vagina, perineum, pelvis, and the upper portion of the lower limb, Dr. Aquino adds. They can present at any time but may be exacerbated by sitting or lying down during the night.
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RGS is extremely rare; it’s estimated to affect 1% of women around the world, and only a handful of men are known to have the condition—although Dr. Aquino points out that it may be more common than we think, due to under-reporting or under-recognition.
RGS was initially described in 2001 as persistent sexual arousal syndrome (PSAS), and it also goes by the name persistent genital arousal disorder (PGAD). For several years, scientists believed the condition was psychological, resulting in a focus on (largely unsuccessful) behavioral therapy. But a recent study, published in the journal PAIN Reports, suggests that RSG may be rooted in neurology.
After studying 10 women with the disorder, scientists detected lesions on the base of the spine, which may trap nerves deep in the spinal cord. If these nerves are related to sexual arousal, the person may experience symptoms of RSG.
But the exact cause of the condition is still unclear, Dr. Aquino says. “Varicose veins in the pelvic area has been considered as another potential cause, as has vulvodynia [a type of heightened sensitivity at the opening of the vagina.]”
In 2008, researchers realized that people affected by RGS symptoms often had symptoms of restless leg syndrome (RLS). In fact, one of the researchers described RGS as “a genital form of restless legs.” In their study of 18 Dutch women with RSG, published in the Journal of Sexual Medicine in 2009, they found that most of them also had restless legs, symptoms of an overactive bladder, and pelvic varicose veins.
Although there’s still no definitive cure for RGS, there are treatments available to alleviate symptoms, such as ice or anesthetizing medications (applied to the area, these may dull the sensation), local nerve-blocking procedures, and dopaminergic drugs, which provide dopamine, a substance that occurs naturally in the body, and are often used to treat RLS, per Johns Hopkins Medicine. “In the first instance, patients need to undergo a careful pelvic exam to rule other diseases before being diagnosed with RGS,” Dr. Aquino says. “Each case needs to be assessed individually and treatment needs to be tailored.”
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In the study published in PAIN Reports, four of the participants had Tarlov cysts, which are tiny sacs of cerebrospinal fluid that can form on sensory nerves in the sacral dorsal area (the collection of bones at the base of the spine). If these sacs apply pressure to nerves related to sexual arousal, they may cause RGS symptoms.
The scientists surgically removed the Tarlov cysts from one participant, and her symptoms were cured. However, surgery didn’t help another participant. To date, all the research on RGS suggests that there may be a range of causes and triggers. Another participant in the PAIN Reports study had a herniated disc that was pinching crucial nerves. Another had suddenly stopped taking an antidepressant medication, and her RGS symptoms stopped when doctors weaned her back on, then off, the meds.
And according to an article published in the Journal of Clinical Sleep Medicine in 2017, some people with RGS may find some relief from sexual activity or masturbation. So, while direct sexual stimulation isn’t the cause of the symptoms, it might just help provide some temporary respite. However, not everyone finds this helpful—only two of the 10 PAIN Reports study participants found relief through sexual activity—so it’s important to take a holistic approach to this complex condition.
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