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Have You Heard of Restless Genital Syndrome?

Recently I came across the name of a syndrome which was quite unfamiliar. It sounded somewhat similar to a condition which 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

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.

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

With RGS, patients complain of a 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.

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.

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.

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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Schürks M. Bussfeld P. Multiple sclerosis and restless legs syndrome: a systematic review and meta-analysis. Eur J Neurol. 2013 Apr;20(4):605-15. doi: 10.1111/j.1468-1331.2012.03873.x. Epub 2012 Oct 18.
  2. Restless Legs Syndrome Fact Sheet. National Institute of Neurological Disorders and Stroke. Accessed at http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm
  3. Stetka BS, De Aquino CH. What Is Restless Genital Syndrome? Medscape. Mar 03, 2015.
  4. Aquino CC, Mestre T, Lang AE. Restless Genital Syndrome in Parkinson Disease. JAMA Neurol. 2014;71(12):1559-1561. doi:10.1001/jamaneurol.2014.1326. Epub 2014 Oct 6.
  5. Anderson P. Restless Genital Syndrome (RGS) a Variant of Restless Legs? Pauline Anderson November 04, 2014.

Comments

  • jilljohnson
    1 year ago

    I have this- is it nerve entrapment or ms?
    Have the spasms – also have foot tingling-
    Had that for years- comes and goes-
    Vaginal stuff had before but not this intense
    Or spasms

  • Jeske
    1 year ago

    I found this post very intriguing as my daughter was diagnosed with RGS as a young teen. At that time we suspected the cause/catalyst to be a prescribed medication (trazadone). She is now 20 and has recently been diagnosed with MS. I appreciate the information re gabapenton and will inquire further from her doctors. RGS is a terrible condition and extremely distressing for anyone to experience – it seriously impacts an individuals quality of life and ability to function. I agree it merits further study.

  • Hayls
    4 years ago

    As we speak my right Leg is burning sooooo much. I’ve wrapped it up with Ice and this , well just freezes it for a short while but (*&%$++**) it brings on Turrets (another illness I developed since MS ;()….. and starts a whole range of other depressing thoughts!
    But the swearing & cursing doesn’t frighten the MS “Monster” oh no it just burns away at my poor little leg for days on end and is quite literally getting on my nerves! please excuse the pun….

  • Lisa Emrich moderator author
    4 years ago

    Hi Hayls,
    Oh dear, it sounds like you are in an unpleasant situation (to put it mildly). I hope that we could speak to your leg and convince it to just cool it off for awhile. But one thing it sounds like this hodge-podge of health conditions hasn’t done is to take away your sense of humor. I hope you can find relief soon.
    Best wishes, Lisa

  • Kathy
    4 years ago

    I have been having an odd and painful feeling more near the rectum than the genital area. I’m In a wheelchair all the time. I wonder if it is the same thing. It’s a horrible pain that shoots up the rectum and nothing seems to help. I Have tried getting out of the chair and into bed. I’ve tried pain medication. No help. After reading this it must be the same thing. Has anyone had success relieving the pain or cramping feeling??

  • Lisa Emrich moderator author
    4 years ago

    Hi Kathy,
    That sounds tremendously uncomfortable and painful. I’m sorry that you are experiencing this problem. If you haven’t already, please tell your doctors about this symptom. I don’t know if it could be related, but perhaps different types of medication may help. I wish you relief soon.
    Best,
    Lisa

  • Judy
    4 years ago

    I am so glad that I am not alone. I am in a wheelchair all the time, and have had an indwelling catheter for over a year. I thought it was related to that, or spasticity in my legs, but it may be another symptom of this disease.

  • Lisa Emrich moderator author
    4 years ago

    Hi Judy,

    I wonder if this could describe what you are experiencing. Please do bring this up with your doctor so see what can be done to reduce your discomfort.

    Be well,
    Lisa

  • Sea Level Girl
    4 years ago

    I have heard it called “Vagina Lightning” and it can bring you to your knees.

  • Lisa Emrich moderator author
    4 years ago

    Hi Sea Level Girl,

    I hadn’t come across that term, but it sounds quite descriptive and painful. Thank you for your comment.

    Be well,
    Lisa

  • Suzanne
    4 years ago

    I have experienced some vaginal burning. I was wondering if it could be attributed to my MS. However, after visiting my gynecologist, he prescribed a very small dosage of Estrace (a vaginal cream) to use twice a week. I am 65 years old, and vagina dryness often occurs post-menopause(which often causes burning). This really helped. I also wanted to address the RLS. I was having lots of problems with this and have started exercising my legs every evening on a recumbent exercise bike. I do a minimum of 10 miles a day and often do 20 miles a day. This has really helped my RLS. Water aerobics is a big help for this too. Any exercise, other than walking where you move your legs a lot, seems to work. Oh, and a great way to get the exercise in on a exercise bike is to have it somewhere where you can watch t.v. at the same time.

  • Lisa Emrich moderator author
    4 years ago

    Suzanne,

    Great suggestions! My rheumatologist is always suggesting putting the bike in front of the TV. Multi-tasking at its best. It is important to condition all possible causes for pain or discomfort and I’m glad that the Estrace has worked for you.

    Kudos to you for riding your recumbent bike for such lengthy distances. I use an upright Airdyne bike (using arms and legs to pedal against air resistance) and can go for about 12.5 miles in 50 minutes. 20 miles sounds like an enormous accomplishment. Good for you!

    Best,
    Lisa

  • Debora
    4 years ago

    I have had MS since the late 70’s diagnosed in the early 90’s. The 4 years I have had symptoms similar to this, shooting pains across the genital area, accompanying a burning sensation. I have bouts of RLS as well especially at night. Are there natural treatments? I acquired Addison s Disease from the Solumedrol damaging my adrenal glands so I am very leery of prescriptions now.

  • Betty Bre
    4 years ago

    Hi Debra, I was dx 1993 RR MS., my course has been in the mild(er) category. I started experiencing RLS 3-4 yrs ago. Irritating, sleep disrupting, no real pain. I now take (supplement) one 100mg L-Theanine capsule (by Enzymatic Therapy bought at Whole Foods) if RLS kicks up in bed. It’s an amino acid. Works for me. Good luck if you try it.

  • Lisa Emrich moderator author
    4 years ago

    Hi Debora,

    The few articles discussing this condition talk about using medication designed for RLS or Parkinson’s disease as options for treating RGS. Definitely something you could talk to your neurologist about.

    Best,
    Lisa

  • Juls
    4 years ago

    Lisa I almost cried this morning when I read about RGS…I have been suffering from this for 14 years. I was DX with RR MS 17 years ago…now SP MS. I will never forget going to an MS event and they asked to write any questions and the would read and answer…. when I wrote that my vaginal area felt like zapping numbness and down into the leg area they said oh that can’t be a bad feeling and almost made a joke about it. For all these years I have told doctors…neurologists it never goes away it is worse with sitting it becomes extremely debilitating mentally. They just say it’s neurological. I did alternative treatments for this I even did alternative treatments in Utah that ended up being bogus and the people ended up in prison actually that’s how desperate I was. I went to the best pelvic floor physical therapist in the United States with no relief at all. I was so thrilled to see I wasn’t going crazy after reading your article thank you for putting a name to this I hope someone can help me with this now. Do you recommend specific places to go and get help for this? Again thank you so much for the information.

  • gmak1953
    2 years ago

    oh my goodness. This was the FIRST clue that I ever had something WRONG with me. I thought I was nuts too. I’d tell the docs my vagina and pubic area have gone to sleep! I rubbed like crazy to “wake it up” to no avail. I had to end up putting an ice bag up as far in my vaginal area as I could. And then of course, I hurt for days from rubbing myself. It is horrid. I’ve not had it for about a year and I pray it never comes back. There was never any warning for it. Also I couldn’t urinate after the fact, so the doc gave me fem caths to catheterize myself. What we don’t deal with. I was in tears when I read there was a name for this!!! Thank you so much!!

  • Lisa Emrich moderator author
    4 years ago

    Hi Juls,

    I’m so sorry that the ‘experts’ at an MS-related event basically laughed this one off. Very rude and not very helpful. I wish that I knew of a specific expert in this field. Authors of the referenced studies are in Canada, Brazil, and the UK. But you could take this information to your neurologist and see what he/she says about it. Perhaps a different treatment approach may be helpful for you.

    Best,
    Lisa

  • Kim Dolce moderator
    4 years ago

    This article is so timely for personal reasons. My own persistent burning in the absence of a yeast infection this past year made me draw the conclusion that I was experiencing neuropathic pain similar to what I feel in other parts of my body, though oddly I do not experience RLS.

    I planned to ask my neuro for Lyrica to treat it as we usually would for neuropathic sensations. Now I’ll ask her is she has read about this phenomenon and treatment with pramipexole. Thanks, Lisa 🙂

    Kim

  • Lisa Emrich moderator author
    4 years ago

    Hi Kim,

    I’m glad that this is a timely subject. It seemed much too interesting and sensitive of a topic to pass over. Sorry to hear that you’ve been suffering from persistent burning for the past year. That sounds extraordinarily unpleasant. But it does make sense that it could be neurologic. Please do let me know what the doctor says and if treatment helps.

    Lisa

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