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Scientific research - A few studies reviewed

United States:

At Rutgers University in Newark (USA) a small fMRI study was conducted in 2007 by Dr. Barry R. Komisaruk and the discoverer of the syndrome Sandra R. Leiblum.

This first study was financed by the Christopher Reeve Foundation. However, the finances were more limited than initially hoped. The study came to a premature end.
Foto Komisaruk The result of this mini-study was that women with PGAD/ReGS show higher levels of brain activity. These higher levels were seen in areas that relate to pain and itch.

Despite the modest size of the study and the preliminary status of the results, the study was an important step forward. The results did show that the symptoms were not imaginary! This was a major recognition for the women who until that point were never really taken seriously.

This line of study had lain still, compounded by the death of Sandra Leiblum in early 2010, for 4 years.

Buoyed by new insights from Dutch research study, that involves neuropathy of the Nervus Dorsalis Clitoridis, Dr. Komisaruk recently (june 2011) took up the study again. Not a continuation of the old fMRI-study, but looking at the many MRIís that women worldwide from 2007 to 2011 have undergone. Based on the Dutch findings (see below), Komisaruk has tentatively announced he has a thought about a possible cause.

Of course, this study is being closely followed by psas.nl!!

»» Update May 2012: This study has been completed and published in 'The Journal of Sexual Medicine'. Sacral (Tarlov) cysts, which form on dorsal (sensory) roots, most commonly of S2 and S3 in the sacral spine, are reported to produce genital symptoms that bear similarities to those described for PGAD. Click here for the article

Video Update Oct. 2013:

Foto Sandra Leiblum Most of the larger studies in de USA, were done by Sandra Leiblum; via (anonymous) Internet surveys.
It turned out that these questionnaires were available to every random internet surfer!!

These surveys should never have been published on the web and in order to reach only the target population (PGAD/ReGS patients), should have been mailed in the post to every diagnosed patient. On top of that, the questions were leading and biased by the background of Sandra Leiblum, who was a psychologist. The scientific value of the results from these surveys are therefore doubtable.

The Netherlands::

The first truly biomedical study took place in the Netherlands. The Dutch neuropsychiatrist Prof. Dr. Marcel D. Waldinger published his first results in 2008 in The Journal of Sexual Medicine.

Foto waldinger
The most important conclusion of this work:

Most women indicated that their symptoms were accompanied by restless legs and an urge to urinate. MRI-scans and Transvaginal ultrasonography studies of the pelvis and genitals of patients showed a high prevalence of varicose veins in the pelvis. According to Waldinger, PSAS/PGAD is a genital form of Restless Legs Syndrome. Based on scientific observation, he states that the sensations have the same characteristics as in Restless Legs Syndrome. To emphasize this similarity, he decided to change the name of PSAS to Restless Genital Syndrome (ReGS). The results of this study definitively exclude a psychological cause.

The complete article, in two parts, can be found on the page Sources/Articles

Although women were very pleased with this medical research, it turns out that the results were not always that accurate:

First of all, Restless legs:

The average age of the participants in the study was 53.8 years old. Women were asked if they had, or if they ever had had, Restless Legs. Most women said yes. So the study's figure of 67% of participants who reported Restless Legs, included women who once in their lives had experienced it. This percentage was compared to the national average of 7.7% with Restless Legs, based on the general population. Including men, women, children, ethnicity, medicine related, illness related, etc.... It is well established that Restless Legs is over represented in women... and over represented in the older population.

The study had also failed to collect crucial data, even recognize these variables, and yet draw conclusions:
  1. Women were not asked if they themselves saw a connection between Restless Legs and their ReGS symptoms.

  2. The women were not asked if their Restless Legs occurred simultaneously with their ReGS symptoms or if there was some other regular timing. The women were not asked if the triggers for their Restless Legs were the same as the triggers for their ReGS symptoms. They were not asked if there were similarities in sensation or length of the two complaints.

  3. The possibility is not considered that the Restless Legs that some women have could be connected to certain medicines or other medical conditions such as diabetes.

  4. There was no control group studied consisting of just women with an average age of 53.8 years!!

Varicose veins:

Also here many of the same criticisms apply.
  1. Varicose veins are over represented in women.

  2. Again, age plays an important role! Varicose veins are more common in older people.

  3. Hormonal influences (such as menopause) are important, and many women who have given birth develop
    varicose veins.

  4. There was no control group studied consisting of just women with an average age of 53.8 years!!

The overactive bladder:

There's no doubt that almost all with the condition experience persistent urinary urgency. Women indicate (monitoring
of support groups worldwide) that these urges simultaneously developed with their ReGS/PGAD symptoms.

"New Insights into Restless Genital Syndrome: Static Mechanical Hyperesthesia and Neuropathy of the Nervus Dorsalis Clitoridis"
Foto DNC

2009 study by Waldinger:

This study offers more concrete evidence than previous studies. Ever since the syndrome was described, pretty much every serious medical researcher has focused on one topic: the Nervus Pudendus. Other medical problems in the pelvis have been connected to this nerve.

The symptoms of PGAD/ReGS are caused by neuropathy of one of the branches of the Nervus Pudendus, the Nervus Dorsalis Clitoridis. Waldinger studied 23 Dutch women with the syndrome. All participants underwent for example a clinical examination of their genitals using a cotton swab. The results showed clearly that all participants experienced areas of extreme sensitivity that are related to the Nervus Dorsalis Clitoridis...

The complete article can be found on the page Sources/Articles

Treatment with Transcutaneous Electrical Nerve Stimulation (TENS) was hoped to relieve symptoms. Unfortunately it seems that (2 years after publication) the treatment is not effective for most women. Follow-up studies on other treatment options are urgently needed!!

This study is the most extensive and interesting work ever done (2011). Unfortunately follow-up studies have yet to be done...

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