What doctors should know -
First: Read the »» DISCLAIMER
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 SEXUAL PROBLEM
NO SEXUAL DISORDER
NO HYPER SEXUALITY/NYMPHOMANIA
NO OBSESSIVE-COMPULSIVE DISORDER, PERSONALITY DISORDER, ,
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
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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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
In a remarkable number of women, often a combination of several of the above factors mentioned existed prior to the onset of symptoms.
- Exposure to severe, prolonged and often accumulation of multiple stressors
- Combination of (prolonged) physical and emotional stress
- Hormonal changes
- Around MENOPAUSE (often!)
- During pregnancy or following childbirth
- After stopping birth control pill
- Stress-related hormonal changes
- 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
- While on SSRI's
- While withdrawing from SSRI's (often!)
- While on, or withdrawal from use of other medicines
- Long history of infections
- Yeast or fungal infections
- Urinary tract infections
- Other genital infections
- Body posture
- Office jobs, sitting (often!)
- Excessive biking/spinning/working out
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
If you can identify and empathize with your patients, you are a true medical professional. But then...
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
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
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 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
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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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
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!
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!)
Admission to psychiatric hospitals (unbelievable but true!)
Yeast infection treatment
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!
Transcutanous Electric Nerve Stimulation (TENS)
More info on the page
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