Have You Heard of Restless Genital Syndrome?

Last updated: February 2023

Recently, I came across the name of a syndrome that was quite unfamiliar. It sounded somewhat similar to a condition that occurs more frequently in people with multiple sclerosis (MS) - Restless Legs Syndrome - so that’s what caught my attention.

What is Restless Legs Syndrome (RLS)?

According to a meta-analysis of studies related to RLS and MS, the prevalence of RLS among people with MS ranges from 12.12% to 57.50%, while the prevalence of RLS among people without MS ranges from 2.56% to 18.33%. A pooled analysis indicates that the odds of RLS among people with MS are fourfold higher as compared to people without MS.1

Common symptoms of RLS

People with RLS feel uncomfortable sensations in their legs, such as throbbing, pulling, or creeping, especially when sitting or lying down, that are accompanied by an irresistible urge to move the affected limb to help relieve the discomfort. The unusual sensations, called paresthesias or dysesthesias range in severity from uncomfortable to irritating to painful.

How are these symptoms controlled?

Symptoms may be reduced in persons with mild to moderate symptoms by moving the affected limbs, controlling an underlying condition, or certain lifestyle changes or self-care activities. Commonly prescribed medications include drugs that increase dopamine, such as those used to treat Parkinson’s disease, benzodiazepines to treat anxiety, muscle spasms, and insomnia, such as clonazepam and diazepam, anticonvulsants, such as gabapentin and pregabalin, and opioids, such as codeine, propoxyphene, or oxycodone.2

What is Restless Genital Syndrome (RGS)?

RGS is a rare somatosensory disorder, increasingly being recognized as a variant of RLS, that is characterized by unpleasant sensations involving the genital area and pelvis. RGS has been defined as a “spontaneous, intrusive, and unwanted genital arousal that occurs in the absence of sexual interest and desire.”3 This condition has been called by other names, such as vulvar dysesthesia or persistent genital arousal disorder.

Common symptoms of RGS

With RGS, patients complain of discomfort in their genital area, often described as a burning sensation, tingling, pain, itching, or throbbing. “Often [patients] say that it is difficult to find a word to describe their symptoms,” Dr. Aquino told Medscape. Symptoms tend to be worse when patients are sitting or lying down, particularly in the evening, and may be alleviated by standing and walking - very similar to typical RLS symptoms.

What causes RGS?

The cause of RGS, like RLS, is not fully understood. However several mechanisms have been proposed: reduced iron levels in the central nervous system, and abnormalities in circadian rhythm and in various neurotransmitters, such as dopamine, glutamate, and opioids. Genetics may play a role as well.

Is there an association with Parkinson's disease?

An association with Parkinson’s disease (PD) has been suggested. In a case report published in JAMA Neurology,4 a woman with PD and disabling genital discomfort was discussed. The woman described a sensation of "congestion," itching, and "growing" of pelvic organs, symptoms that were triggered by sitting or lying down. She did not experience restlessness in her legs, but her symptoms responded well to the dopamine agonist pramipexole.

Phenotypes of RLS

The authors concluded that RGS should be considered a phenotype of RLS, as should restless bladder and restless abdomen. They emphasized that a detailed clinical history is essential for this diagnosis and that treatment with dopamine agonists can provide some benefit.5

Multiple sclerosis and genital disturbances

As a result of MS affecting the nerves, men and women with MS may experience burning and other unpleasant genital sensations, loss of sex drive, and decreased ability or lack of orgasm. Men may experience impotence and find it difficult to ejaculate. Women may experience vaginal dryness and a loss of muscle tone in the vaginal area.

Are people with MS more susceptible to RGS?

Although I have not read personal stories of people with MS who describe symptoms similar to those of RGS, I question whether its relationship to RLS may make people with MS more susceptible to experiencing RGS. If people with MS are four times more likely to develop RLS, are they also more likely to develop the rare condition currently known as RGS?

This may be a good research question to submit to iConquerMS.org. What questions about MS would you like to know more about?

Lisa Emrich | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

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