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What doctors should know  -   First: Read the »» DISCLAIMER


 What it is and what it isn't

 PGAD/ReGS is not "all in your head"

 Impact

 Who can get it

 Causes and connections

 Tips for professionals

 Treatments

 Sources/Articles


What it is

Persistent Sexual Arousal Syndrome (PSAS), Persistent Genital Arousal Disorder (PGAD) and Restless Genital Syndrome (ReGS) are one and the same condition. The condition is characterized by involuntary, highly unwanted, unrelenting, intrusive and persistent (24/7) genital sensations. These sensations are unrelated to subjective feelings of sexual arousal and sexual desire. In some cases accompanied by pain and in almost all cases accompanied by constantly feeling the need or urge to urinate. The symptoms are often described as tingling, itching, throbbing, burning, orgasmic wave-like, sense of fullness (congestion), electrical, rhythmical contractions and constantly give the feeling of being on the verge of orgasm. This physical genital arousal does not go away following one or more orgasms. In most cases the symptoms just get worse. The need to release in order to get rid of the dominant sensations remains. The symptoms only fluctuate in intensity, but are always present.

The genital area is hypersensitive for increases in intensity. Especially sitting down is experienced as a trigger (main trigger). But also intolerance for wearing tight pants, sensitivity to touch, bending down, lifting, walking, biking, lying down in a specific position and sexual activity, are mentioned being the cause for an increase in intensity. Driving a car, traveling by public transport and even vibrations of low frequency sounds, can increase the intensity of symptoms. So can stress and irritation. Continuous and excessive vaginal lubrication is often present, but not in all cases.

The condition is, in most cases and to some extend, progressive. In the beginning (approx. the first 6 months) symptom free periods, lasting from a few days to a few weeks, are reported. In the phase following, there generally are no symptom free periods any more. An exception on this (so far) is a group of women who had similar symptoms during pregnancy or during a brief period after delivery. After which the symptoms have completely disappeared, to reappear in a later period (often around menopause). Pain symptoms generally develop later. Not every woman develops pain. In most cases the clinical picture stabilizes within one year after onset.

See here the (preliminary)   5 diagnostic criteria


What it isn't







NO ADDICTION

NO SEXUAL PROBLEM

NO SEXUAL DISORDER

NO HYPER SEXUALITY/NYMPHOMANIA

NO OBSESSIVE-COMPULSIVE DISORDER, PERSONALITY DISORDER, ,

OF OR ANY OTHER PYSCHOLOGICAL/PSYCHIATRIC DISORDER!!


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PGAD/ReGS is not "all in the head"! It's between the legs!

Dutch scientific research, which started in 2004, resulted in the identification of the cause of the condition in 2009. The study showed that PGAD/ReGS is caused by a (sensory) neuropathy of the Nervus Dorsalis Clitoridis (in men the Nervus Dorsalis Penis). In 2010 the first study results of PGAD in men came available. Both studies were published in The Journal of Sexual Medicine.

In the section  Sources/Articles you can (among others) download these articles.

Although to date (May 2011) there hasn't been done research into the possible involvement of other nerves, there is a strong suspicion that more branches of the Nervus Pudendus are involved. It is strongly suspected as well, that PGAD is not just an isolated condition. Women with PGAD have many other physical symptoms in common.


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Impact

On top of the physically disabling effects, such as avoiding triggers at all cost, the condition has an enormous impact on both general physical, and general psychological wellbeing. The persistent genital sensations are so overwhelming, that women can hardly concentrate on anything else. The intrusive sensations are impossible to ignore and have major impact on normal daily functioning (in the widest sense) as well as affecting sleep during the night.

The misleading feeling that masturbation or intercourse (sexual frame of reference) can offer the only exit out, while knowing that that doesn't solve anything, drives women into great despair. Giving in to the confusing and dominant demands that the lower body seems to ask, also fills women with feelings of disgust, shame and guilt. 'Normal' sexuality has completely changed dimensions and changed something, that once was very pleasurable, into feelings of being a prisoner of one's own body.

Having to keep these sensations hidden from the outsite world, puts an extra strain on top of it!

This all demands an enormous amount of energy, often leading to chronic fatigue, depression, isolation and not seldom... to suicidal thoughts. Women often hardly function. More frequent and longer sick leave, diminished social contacts, relational problems, no longer being able to enjoy the simple things of live, loss of interest in hobbies; with all the emotional and societal consequenses that follow.

Not knowing what's wrong with them, women carry "their big secret" alone; sometimes for years! Fear of not being fully understood (they hardly understand it themselves) and fear of rejection, keeps women from sharing their situation with loved ones. Even with their own partner. Not the initial but those secondary signs often alert family/friends that something is wrong.



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Who can get it

The syndrome was first described in the medical literature in 2001. For a long time it seemed that only women around menopause got PGAD/ReGS. Up to this date ((May 2011) this group still represents the majority of sufferers.

As the syndrome became more well-known, it became more clear that anyone could be affected by it. Young women, men and even children. It also became clear that the condition exists much longer than the discovery in 2001. From data from support groups worldwide, it is clear that some women have had the condition for 40 years, or even longer.




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Causes and connections

Like this entire website, the following is a result of interest, in-depth study, and daily monitoring of women with PGAD/ReGS on various support groups worldwide since 2006 (more than 20,000 documented messages). As well as studying data from the literature, participation in scientific research, questionnaires by fellow sufferers, running support groups myself, and..... 'last but not least': Living 'on the verge' myself, being an expert by experience since 2003.


Remarkable similarities prior to the onset of symptoms

  1. Stress
    • Exposure to severe, prolonged and often accumulation of multiple stressors
    • Combination of (prolonged) physical and emotional stress

  2. Hormonal changes
    • Around MENOPAUSE (often!)
    • During pregnancy or following childbirth
    • After stopping birth control pill
    • Stress-related hormonal changes

  3. Physical trauma
    • After childbirth
    • After an accident; for instance a car accident or a fall (tailbone or lower back)
    • After surgery in the pelvic area
    • After an epidural
    • After a urinary catheter
    • Varicose veins in the pelvic area

  4. Medication
    • While on SSRI's
    • While withdrawing from SSRI's (often!)
    • While on, or withdrawal from use of other medicines

  5. Long history of infections
    • Yeast or fungal infections
    • Urinary tract infections
    • Other genital infections

  6. Body posture
    • Office jobs, sitting (often!)
    • Excessive biking/spinning/working out
In a remarkable number of women, often a combination of several of the above factors mentioned existed prior to the onset of symptoms.
Possible connection

Vulvodynia, a chronic pain syndrome, could be related to ReGS/PGAD. Some women who have Vulvodynia report feelings of unwanted non-sexual arousal. Vice versa, women with ReGS often report symptoms of pain that could be connected to Vulvodynia.


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Tips for professionals


Identify and imagine
  What it would feel like, not having any say in it yourself, to be tormented by a full erection 24 hours a day
   and constantly felt like you were on the verge of orgasm.....

  How you would feel, if you felt the constant urge for discharge, knowing that the refractory period would only be
   temporary, might not even occur, and the feeling remains or even gets worse than before the discharge...

  What it would mean for you, to be constantly distracted by that throbbing feeling in your genitals
   (also at night) and be unable to concentrate on anything else. What would that mean for your daily functioning
   and what impact that would have on your well-being...

  What it would feel like, having to explain these symptoms to your partner, family, friends or a totally ignorant
   doctor...

  How it must feel to risk being stigmatized as an 'oversexed pervert' or 'potential pyschiatric patient', just by
   being open about your physical symptoms?
If you can identify and empathize with your patients, you are a true medical professional. But then...


If my patient tells me she thinks she has ReGS, how should I react?

Take your patient seriously and keep the communication open. Watch your body language. A medical professional with red ears, avoiding eye contact, is unable to help.

Reacting with shock or disgust will end communication. Your patient will never come back and will tell her friends and family that you are not an empathetic listener. She needs to feel validated by you and be convinced you want to help her. Most women with PGAD/ReGS have had multiple negative experiences with doctors. Recognize the condition, the seriousness of it, and show compassion (which shouldn't be a problem if you can really empathize and have read this site!) .

This is NOT the moment to break the ice with humor. Jokes like 'I wish my wife had that!' or 'is it contagious?' are not funny and totally inappropriate.


Be extra supportive

It is really very difficult for women to bring the topic up with their doctor. Women with ReGS are extremely embarrassed about their unwanted feelings and often close to despair. A significant number of women have suicidal thoughts. Many women feel lonely in their search for a compassionate doctor.

It is especially vital that you disconnect her symptoms from your own sexuality! If you cannot, refer your patient to another doctor, preferably a female one. Be honest: Most doctors are not familiar with this condition. Nothing to be ashamed about. So don't pretend, just because you are 'the doctor'. It's OK if you say you have never heard of the condition. Show willingness to help your patient and seek help from a doctor who is familair with this phenomenon, or contact one yourself (for contacts see elsewhere on this site).

If your patient brings information to your attention during an appointment, show interest and read it (to a reasonable extent). If she has a lot of information, ask if you may make copies, and educate yourself another time. Your patient is the expert here, not you!

Maybe you have heard about the condition but don't know how to treat it. Be honest about that as well. Don't start experimenting with all sorts of untested therapies; know your place! Anti-androgens for example, work counter productive. Symptoms do absolutely not decrease. PGAD/ReGS has nothing to do with libido! It will only make women instable and unable to reach orgasm when necessary! Hands off, no experiments!!

Tell that there is research being done both in the Netherlands and in America. (More info on the pages "Sources/articles" and "Research"). Keep asking questions and recognize the impact that the condition has on the life of your patient and her surroundings. Take it seriously and see it as the logical and understandable consequence of the condition and not as the cause of it. Consider this analogy: not so long ago, epilepsy patients were locked away in mental hospitals. Luckily we know better now...




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About treatment:


Don't prescribe anti-androgens

Don't knock out testosterone. There is no evidence whatsoever that women with PGAD/ReGS have higher testosterone levels. Side effects of these non-effective medications only increase the misery women are already in.


Don't prescribe anti-depressants

At least not to knock out libido, knowing that it may influence (diminish) libido. Delete 'libido' from your vocabulary and scratch it from dictionary when it comes to dealing with a woman suffering from PGAD/ReGS. Because

a)It does not work and
b)Women lose the ability to achieve orgasm while the symptoms remain unchanged.

However, sometimes it can be necessary to prescribe anti-depressants The impact of the condition often leads to depression. In which cases, the pro's and cons need to be very carefully weighed. SSRIs are notorious for their sexual side effects. Several sufferers even reported that their problems with unprovoked genital arousal began while on, or coming off
of a SSRI (article ).

No pelvic floor exercises

At least not 'Kegel' exercises! Kegel exercises may be beneficial in treating urinary incontinencedie but NOT in treating PGAD/ReGS!! Strengthening of the pelvic floor muscles (which are already too strong!) by contracting and relaxing them, works absolutely counter productive and only worsen symptoms!! Because women also feel the urge to urinate (only the urge), these exercises are often prescribed but has proven to be disastrous for women with PGAD/ReGS!! Without any exception!!





No referral to a sexologist

PGAD has absolutely NOTHING to do with sex!!!

No referral to a psychologist or pyschiatrist

Unless the patient needs help learning to deal with the condition and the professional of course is familiar with the syndrome. PGAD/ReGS is not a pyschological or psychiatric disorder!


Other Don'ts

Desperate women around the world have tried the following, without any success and sometimes even with disastrous consequences:

  • Nerve decompression surgery
  • Electroconvulsive therapy, ECT (unbelievable but true!)
  • Nerve blocks
  • Admission to psychiatric hospitals (unbelievable but true!)
  • Yeast infection treatment
  • Botox
  • Champix/Varenicline



  • Do's

    First I need to emphasize that this is not a medical website. The list below is a summary of treatments which women around the world have tried and which have provided some, and I emphasize some improvement. What works for one woman, may not work for another!

  • Oxazepam
  • Clonazepam
  • Lorazepam
  • Tramadol
  • Lyrica
  • Neurontin/Gabapentine
  • Transcutanous Electric Nerve Stimulation (TENS)
  • Osteopathy
  • Acupuncture


  • More info on the page   Sources/Articles


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