What Is Restless Genital Syndrome?

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).

This article will explain the causes, symptoms, diagnosis, and treatment options for RGS.

What Is Restless Genital Syndrome?

"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.

Despite their location, these symptoms are not the same as sexual arousal. "They can be hard to describe," 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. Aquino pointed out that this condition may be more common than we think due to under-reporting or under-recognition.

Causes and Risk Factors

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, risk factors for RGS may include having anxiety, depression, obsessive-compulsive symptoms, and catastrophization (anticipating bad things happening). It is also believed to be related to low sexual desire and greater sexual distress.

Furthermore, people with RGS may have more activity in the parts of the brain associated with lower body sensations. This may explain why it can exist in people with overactive bladder or restless legs syndrome.

A 2020 study in Pain Reports also provides more insight into the neurology of RGS. In this case study, nine of the 10 participants 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 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 antidepressant medications like selective serotonin reuptake inhibitors (SSRIs), according to the ISSWSH. More research is needed to determine whether these factors could cause RGS.

Symptoms

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

• Experienced most commonly in the clitoris but can occur in other genital and pelvic regions
• Is not associated with sexual thoughts or desire
• May include buzzing, burning, itching, and pain
• May cause orgasms or be on the verge of orgasm
• Lasts three or more months

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, or suicidality
  

Diagnosis

Your healthcare provider will ask you about your medical history, medications, and whether you have any relevant psychological factors.

They will also examine or test your genitals to look for any genital abnormalities that may help them find the origin of your RGS sensations.

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," Aquino said. "Each case needs to be assessed individually, and treatment needs to be tailored."

Imaging studies (such as an x-ray or ultrasound) of the pelvic area may also be necessary to rule out potential causes related to the nerves or muscles.

Treatments for RGS

If you have RGS, work with your healthcare provider to decide what treatments are best for you. Treatments for the syndrome may include:

Cognitive behavioral therapy (CBT): CBT teaches patients skills related to controlling negative thoughts. One strategy used in CBT is to keep a diary of symptoms and note if specific thoughts, feelings, or behaviors triggered them.

Mindfulness meditation: Practicing mindfulness meditation can help patients learn to relax, focus inwardly, and release tension and distracting thoughts. This meditation may also help someone “sit” with the distressing sensations through acceptance and self-compassion.

Medications: There are no currently approved medications to treat RGS, but your healthcare provider may recommend trying medications like gabapentin, clonazepam, or paroxetine, which have helped some patients.

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

Neuromodulation: By targeting specific nerves with electrical devices, neuromodulation may help prevent RGS symptoms. If your condition is due to blood vessels or abdominal wall nerves, you can have those blood vessels blocked or nerves destroyed.

A Quick Review

Restless genital syndrome (RGS) is a rare condition that causes unwanted sensations in the genital area. Symptoms do not occur as a result of sexual arousal or desire. RGS is most commonly treated with cognitive behavioral therapy, but certain medications and other medical approaches have also been helpful for some people.