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This website contains information about Restless Genital Syndrome (ReGS).

Previously known as Persistent Sexual Arousal Syndrome (PSAS) or Persistent Genital Arousal Disorder (PGAD).

The syndrome is a medical condition and has no sexual basis. Nevertheless, the content of this site can be shocking and is therefore inappropriate for children. This website does not contain pornographic components and therefore is no place for
thrill seekers.


The purpose of this website:
  Reduce the isolation of women, by letting them know that they are not alone and that their condition has a
   name.

  Provide women with information which may help them get more insight in the syndrome, or help choose
   a treatment thatís right for them.

  Give women who suffer from the condition (or think that they might) the possibility to communicate with each
   other via private forums/support groups.

  Raise awareness and understanding in general, and educate the medical community about the existance
   of ReGS/PGAD.
Please note!

This website is a private initiative and is NOT designed to, and does NOT, provide medical advice! All content, including text, graphics, images and information available on or through this website, is general information. The Content is not intended to be a substitute for professional medical advice, diagnosis or treatment.

NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING YOU HAVE READ ON THIS WEBSITE. NEVER RELY ON INFORMATION ON THIS WEBSITE INSTEAD OF SEEKING PROFESSIONAL MEDICAL ADVICE.

Johanna Vante


  Discovery of the syndrome in 2001 - Scientific research

Foto scientists Sandra Leiblum

The syndrome was first documented in the medical literature by this American psychologist, who developed five diagnostic criteria for PSAS. In 2007 she changed the original name 'Persistent Sexual Arousal Syndrome' (PSAS) to 'Persistent Genital Arousal Disorder' (PGAD)... Read more

Research

Research into the cause(s) of the syndrome has been slow in coming since then. Meaningful research but unfortunately also nonsense research that doesn't even deserve the name "scientific". Lots of speculation from one specific focus or angle. In particular by psychologists and sexologists. But also other kinds of tunnel vision 'research' that often led to controversial results;
to say the least!!

Conducting scientific research on an unknown condition is not easy. Because... where do you start? The research field is wide open. As a result, the subject of research, the patient herself, is often objectified. This website aims to give women a voice when academia arrogantly ignores their input.

Therefore on the page 'scientific research', criticism regarding how some of these studies came about can be found, next of course to hopeful reports...
... Read more


More Info for patients and professionals

Doctors can't know everything and that's fine. PGAD/ReGS is still a relatively 'new' condition. For doctors as well as patients, this website offers the most up-to-date and complete source of information about the syndrome ... Read more



Women share...

Personal testimonies of women:
Read about the impact this condition has on the lives of women.



Questions & Answers

A bizarre condition that can puzzle both insiders and outsiders. In the Questions & Answers section, many questions are discussed concerning this phenomenon... Read more



The media

Attracting the right kind of media attention is very important. Raising awareness for this often misunderstood disease leads to more understanding. Magazines, newspapers, radio, TV. And of course the Internet and social media. Read, listen to and watch interviews with patients and scientists... (This page is only available in Dutch)



Contact with fellow sufferers... is CRUCIAL!

Women of all ages and backgrounds have found comfort and support in
sharing with fellow sufferers



       Knowing that you're not the only one with this bizarre condition ...

       Knowing that other women understand what you're going through ...

       Knowing that you're important and can meet others, just like you...

     Dutch online support group since 2007

     American online support groups:  Join one or more groups!



Who - What - Where?

  Why me?

  Who can I confide in?

  Which doctor should I go to?

  Why am I so ashamed?

  Will it ever go away?

  What's my future prognosis?

  How can I defend myself against misunderstanding?

  What does this mean for my sex life?

  What does this mean for my job? ... Read more


Myths and Misconceptions

Ever since the discovery of the syndrome, all kinds of outrageous stories about this condition have been buzzing around. Because the condition has a sexual connotation, causing it to appeal to the imagination of (mainly) men, the sensation orientated media has regrettably presented this syndrome out in a disgusting manner. Tall stories about women having 500 or even 800 orgasms a day, has spectacularly boosted tabloid/magazine sales .

And then there's the misconceptions of ignorant doctors, who dare to label it 'nymphomania' or 'all in the head'. The truth about the condition is a lot less sensational, much more complicated and it is not at all enjoyable or fun to those who suffer from it. ... Read more

Johanna Vante's Guest Sites

Web pages available for other NON-sexual medical conditions with a sexual nature.

These pages are completely free. Patients who don't have their own website are provided with the opportunity to create an informational website about their specific condition.

Just send in text, graphics and links and I will take care of the rest! Including search engine optimization and website promotion!

For more info about terms and conditions click here


Treatment

The cure has yet to be found. Luckily there are various treatments that can reduce symptoms to some degree
... Read more

Tips

Learning to cope with the condition is not easy
but IT IS POSSIBLE!! ... Read more


Interesting publications

Scientific research is being conducted in both the USA and in the Netherlands. Almost all of the published results can be found here.
What is PGAD/ReGS/PSAS exactly?
Symptoms

The syndrome is characterized by unrelenting, unwanted, persistent and intrusive genital arousal.

The condition manifests itself as sexual arousal that occurs apart from any of the physical or psychological stimuli that trigger normal arousal.

These sensations which SEEM like arousal, are NOT based in sexual desire, sexual thoughts or sexual behavior: The condition is completely non-sexual and has absolutely nothing to do with libido.

The intensity of the symptoms fluctuates, also depending on certain triggers. Any pressure in or around the genitals leads to increased intensity. Especially sitting leads to a greater intensity. Other triggers include: tight clothing, biking, use of certain muscles in for example lifting and.... even gravity!

PGAD/ReGS is a medical condition, in which false signals are sent out continuously, leading to the feeling of being on the verge of orgasm 24/7. In some cases these symptoms are accompanied by pain and in almost all cases accompanied by constantly feeling the need or urge to urinate.


Cause

Currently the most probable cause is neuropathy of one of branches of the Nervus Pudendus, the so called NERVUS DORSALIS CLITORIDIS/PENIS.




This branche is associated with orgasm. The involvement of other nerves or other branches is very possible.

Patients with the condition often report orgasmic feelings in other parts of the body. The urethra and anus are mentioned very often. Also the belly, loins, feet and/or toes are often reported.

It is not clear why excessive signals are being sent through these nerves/branches. Based on reports from women over many years, it is safe to assume that these bizarre symptoms arise from various causes.

Who can get PGAD/ReGS

Initially it was thought that the condition affected only menopausal women. Although the majority of patients fits this description (approx. 70%), we now know that anyone could be affected. Young women, men and even children...


Impact

Patients with the condition live continuously and involuntarily in or on the verge of an orgasm (24/7). They experience their condition as negative, destructive and overwhelming. The ever-present symptoms have a serious effect on their daily lives, demanding an enormous amount of energy, often leading to chronic fatigue, depression, isolation and not seldom ... to suicidal thoughts. Due to shame, guilt and fear of rejection, patients may withdraw from society and are at risk of becoming isolated.

The condition's nature suggests, that there must be more women suffering from PGAD, but may be too embarrassed to talk about it, causing them to suffer in silence...








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The Guest Page of
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What doctors should know
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 * Suicide among patients...

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Self-management strategies
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In the media
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