What Is Restless Genital Syndrome?

It can cause unpleasant genital sensations, even when you are not feeling sexual desire.

According to a 2018 case report published in Cureus, restless genital syndrome (RGS) is a rare condition where people have sensations and sensitivity of their genitals even when they're not feeling sexual desire. RGS was first described as persistent sexual arousal syndrome (PSAS) in a 2001 case study. However, it is now called RGS or persistent genital arousal disorder (PGAD).

"RGS is a syndrome characterized by unwanted and unprovoked discomfort in the genital area," Camila Aquino, MD, an assistant professor of neurology at the University of Calgary in Alberta, Canada, told Health.

These sensations may occur in your vagina, perineum, pelvis, and the upper portion of your legs. They can be present at any time but are often worsened by sitting or lying at night.

Despite their location, these symptoms are not the same as sexual arousal. "They can be hard to describe," Dr. Aquino said. "People who are affected by RGS often describe it as pain, numbness, vibration, restlessness, or a burning sensation."

In a 2020 Journal of Sexual Medicine article, researchers found that 1.1-4.3% of cisgender men and 0.6-2.7% of cisgender women in North America had moderate or high-frequency RGS, as defined by the initial 2001 case study.

However, 6.8-18.8% of people in North America had RGS at any frequency. Dr. Aquino pointed out that this condition may be more common than we think due to under-reporting or under-recognition.

Causes

For years after RGS was first identified, scientists thought the condition was only caused by psychological factors. However, research suggests that your nervous system or medications could cause RGS.

In 2021, the International Society for the Study of Women's Sexual Health (ISSWSH) released a review of the condition in The Journal of Sexual Medicine.

According to the ISSWSH, RGS is associated with anxiety, depression, obsessive-compulsive symptoms, catastrophization, and less sexual desire/greater sexual distress. Furthermore, people with RGS may have more activity in the parts of the brain associated with lower body sensations.

A 2020 study in Pain Reports also provides more insight into the neurology of RGS. In this case study, 9 of the ten cisgender women with RGS had abnormal tissue called lesions at the base of their spines. The scientists hypothesized that these lesions could affect nerves related to sexual arousal, causing RGS.

However, according to Dr. Aquino, other potential causes of the condition are still unclear. "Varicose veins in the pelvic area have been considered as another potential cause, as has vulvodynia (a type of heightened sensitivity at the opening of the vagina)."

People have also reported developing RGS after they start or stop taking medications like SSRIs, according to the ISSWSH. More research is needed to determine whether these factors could cause RGS.

Diagnoses

The ISSWSH defines RGS as being "persistent or recurrent, unwanted or intrusive, distressing sensations of genital arousal" that fit the following criteria:

  • Lasts three or more months
  • Commonly occurs in the clitoris but can occur in other genital and pubic areas
  • Is not associated with sexual thoughts or desire
  • May include buzzing, burning, itching, and pain
  • May cause orgasms or being on the verge of orgasm

Though these are not criteria, RGS can also be linked with the following characteristics:

  • Not resolved by sex
  • No physical evidence of genital arousal, like lubrication or swelling
  • Reduced orgasm quality
  • Worsened by certain circumstances, like stress or sitting
  • Despair, exaggerated mood changes, catastrophization, and/or suicidality

Your healthcare provider may examine or test your genitals to find the origin of your RGS sensations. Be prepared to discuss your medical history, medications, and whether you have any relevant psychological factors.

Since other conditions can cause similar symptoms, "patients need to undergo a careful pelvic exam to rule out other diseases before being diagnosed with RGS," Dr. Aquino said. "Each case needs to be assessed individually, and treatment needs to be tailored."

Treatment

If you have RGS, work with your healthcare provider to decide what treatments are best for you. They may recommend first starting with the least invasive techniques, like therapy.

For example, the ISSWSH recommends cognitive-behavioral therapy or mindfulness. In addition, your healthcare provider may recommend trying medications like gabapentin, clonazepam, or paroxetine. There are no currently approved medications to treat RGS, but your healthcare provider could recommend medicines to reduce your symptoms.

Treatments can also target the physical causes of your RGS. The ISSWSH states that steroid or neurotoxin injections can dull the sensations, and physical therapy can help people to learn how to move without worsening their symptoms.

Neuromodulation, a nerve-rerouting procedure, is another method to prevent RGS symptoms. And if your condition is due to blood vessels or abdominal wall nerves, you can have those blood vessels blocked or nerves destroyed.

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