Have You Heard of Restless Genital Syndrome?
Last updated: August 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 (RLS) _ so that’s what caught my attention.
What is RLS?
According to studies related to RLS and MS, the rate of RLS among people with MS ranges from 12.12 percent to 57.50 percent. That's compared to the rate of RLS among people without MS, which ranges from 2.56 percent to 18.33 percent. An analysis shows that the odds of RLS among people with MS are 4 times higher as compared to people without MS.1
Common symptoms of RLS
People with RLS feel uncomfortable sensations in their legs. This may include throbbing, pulling, or creeping, especially when sitting or lying down. These sensations come with an irresistible urge to move the affected limb to help relieve the discomfort. The unusual sensations range in severity from uncomfortable to irritating to painful.2
What is Restless Genital Syndrome (RGS)?
Restless genital syndrome (RGS) is a rare somatosensory disorder. It is increasingly being recognized as a variant of RLS. The main feature of RGS is 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
RGS has been called other names, such as vulvar dysesthesia or persistent genital arousal disorder.3
Common symptoms of RGS
People with RGS experience discomfort in their genital area, often described as a burning sensation, tingling, pain, itching, or throbbing. Symptoms tend to be worse when sitting or lying down, particularly in the evening. Standing or walking may reduce symptoms, similar to RLS symptoms.3
What causes RGS?
The cause of RGS, like RLS, is not fully understood. However, several causes have been proposed, including:3
- Vascular diseases
- Stress
- Overactive bladder
- Pelvis nerve problems
- Use of certain medicines
Is there a link to Parkinson's disease?
Some studies have suggested a link between RGS and Parkinson’s disease (PD).4
In a case report published in JAMA Neurology, a woman with PD and disabling genital discomfort was discussed. The woman described a sensation of congestion, itching, and growing of pelvic organs. Her symptoms 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.4
The authors concluded that RGS should be considered a type 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.4,5
Multiple sclerosis and genital disturbances
As a result of MS affecting the nerves, both men and women with MS may experience:6
- Burning and other unpleasant genital sensations
- Loss of sex drive
- 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.6
Are people with MS more susceptible to RGS?
While 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 likely to have RGS. If people with MS are 4 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?
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