Dr. Robert Echenberg answers questions and offers his own comments on PGAD
What is PGAD (Persistent Genital Arousal Disorder) and how many suffer it on a global scale?
Although PGAD in women is uncommon (no one really knows the actual incidence of this disorder), I want to make it clear that PGAD is a subset of a much larger and quite prevalent group of disorders that together are called “chronic pelvic pain” (CPP) or “Complex Abdominal Pelvic Pain Syndrome” (CAPPS).
An estimated 30 million women in the US alone are diagnosed with chronic pelvic pain. Worldwide, CPP is estimated to affect 15 to 20 percent of all women of reproductive age (teen to menopause). Many studies have shown that at least 90 percent of CPP/CAPPS sufferers have some level of pain with sexually related activities – and my personal experience in treating women with CPP/CAPPS corroborates these statistics.
What leads women to develop CPP/CAPPS and its correlated disorder of Persistent Genital Arousal Disorder or PGAD?
There are five main root issues that can result in a woman developing PGAD. They include:
- Organ and structural “triggers” of the urinary bladder, such as Painful Bladder Syndrome/Interstitial Cystitis (PBS/IC);
- Lower bowel issues such as Irritable Bowel Syndrome (IBS) and Inflammatory Bowel (IBD);
- Gynecologic disorders such as endometriosis, vulvodynia, and vestibulitis;
- Previous accidental injuries, surgeries and childbirth; and
- Sports injuries to the lower genital structures.
Is PGAD a sexual disorder, or a pain disorder?
PGAD is a pain disorder. PGAD is NOT a sexual disorder.
Please explain the symptoms of PGAD.
A neuropathy is a condition that arises from traumas as well as dysfunctions of the body that cause nerves to “fire off” when they should not. When nerves are hyper-sensitive and fire off around the clitoris WITHOUT any sexual arousal or sexual thoughts, a woman feels a variety of sensations that may be linked to pleasurable clitoral (genital) stimulation but very quickly result in painful spasmodic contractions of the pelvic floor muscles and ligaments that mimic spasmodic orgasmic activity – except there is no pleasure and only a variety of different types of pain, including burning, stabbing, cramping, and worse.
Millions of women have various aspects of CPP/CAPPS, but only a small percentage of these have PGAD. In my opinion, as I answered above, all women with PGAD have pudendal neuralgia, and/or pelvic floor dysfunction (chronically tight or “hypertonic” pelvic floor muscles), and most of the women I have seen with PGAD also have combinations of bladder, bowel, and/or reproductive organ dysfunctions. An orgasmic response in these women with PGAD can occur independently of sexual activity. When these patients try to be sexually active, this too “triggers” off painful orgasmic responses.
Obviously when this spontaneously occurs in the daily life of a woman at work or in school or just when walking around, there is a tremendous embarrassment, shame, and anxiety, which ultimately increases depression, anger, frustration, and many other upsetting emotions.
This is all made worse when she is ridiculed or embarrassed further by her family, friends, and even doctors who do not understand any of these conditions and tell patients “they are lucky to be able to have multiple orgasms.”
What causes PGAD’s painful sexual response? Symptoms of PGAD generally tend to involve paindeep within the pelvic floor muscles, and in and around the external genital region. Flares can occur regularly for periods of time, but patients can go months or even years without any of these symptoms. When flaring, even the slightest contact with clothing can hyper-stimulate the onset of painful spasmodic responses.
Does PGAD affect women of a specific age group?
In my personal experience, I have seen patients varying in age from teens to post-menopausal. The small amount of literature about PGAD places it more commonly in the late reproductive years (40s-50s).
Why do some doctors think it is hyper-sexuality, and what is the key to diagnosing it well?
In my experience, most doctors have very little education in human sexuality or in the rapidly evolving science of pain. Both of these subjects are still not considered to be worthy of teaching in any significant extent in our medical schools. PGAD is a confusing combination of symptoms that the vast majority of doctors and others just do not understand. However, if more practitioners understood many of the other pelvic and genital pain disorders, such as vulvodynia, painful bladder syndrome, vulvar vestibulodynia, pelvic floor hypertonic dysfunction and some degree of pain science, it would be far easier for them to understand, diagnose and actually help women (and some men) with PGAD.
Is PGAD different than women who experience multiple orgasms?
YES, it is very different. Perfectly normal, healthy women have long been known to be able to achieve multiple orgasms with pleasurable sexual activity. PGAD is not related to normal pleasurable sexual response. It is a complex neurologic and inflammatory disorder related to how signals are processed from the genital region to the brain.
Numbers of women may go through incremental stages of “under the radar” bladder and urethral sensitivities, along with early pudendal or other pelvic neuropathic symptoms, during which time they may initially feel more “arousal” intensity during genuine sexual activity. Later, their increased sensitivity begins to turn to an annoyance or a discomfort, and this can eventually lead to various descriptions of pain, burning, pressure, cramping, stabbing, and worse.
At the same time these women may discover that the pleasure sensation that has become more irritating may correlate with urethral and/or bladder sensitivity. In addition, a large number of the women we see with pain related to sexual activity often will tell us that they can achieve arousal and even orgasmic response, but that they “pay for it” with pain and cramping that may last for some days thereafter.
There may be a fine line between pleasure and pain in many of these chronic pelvic pain patients. If the pudendal nerve branches innervating the entire vulva are more and more “dialed up” in their signaling in association with a sensitive and tender urethra and bladder, then vaginal intercourse may turn from pleasurable to painful.
Also, many of our patients with painful bladder syndrome (PBS/IC) recognize that for years they have experienced an immediate need to urinate during and following deeper penetration intercourse. Many young women are taught to “pee” following sex to avoid “UTIs”, so they train themselves to empty their bladders before and after sexual relations. However the research on PBS/IC clearly shows that a very high percentage of so-called “UTIs” following sex are really flares of interstitial cystitis.
In addition, I have begun to suspect that the so-called “G Spot” in the anterior vaginal wall may indeed be the urethra itself. The “G Spot” which has been talked about for years has never been anatomically demonstrated. The female urethra courses down the midline of the front half of the vagina and can become significantly sensitive in a portion of IC/PBS patients. This urethral sensitivity might explain the pain/pleasure continuum that we earlier mentioned associated with PGAD. Vaginal intercourse cannot avoid urethral friction and may thus lead in these women to a state of arousal or hyper-arousal.
Is there any effective therapy for PGAD?
YES. PGAD is treated like other peripheral neuropathies and chronic pelvic pain disorders. Find and treat all “triggers” which may be pudendal neuralgia, IC/PBS and others, treat the pain adequately and always find a qualified pelvic floor physical therapist for the inevitable pelvic floor dysfunction or clenching.
There are medications such as anti-depressants, anti-seizure medications, beta-blockers, and even peripheral nerve blocks on the pudendal nerve that I have seen to be quite effective. Also, because of the secondary anxiety and depression, it is very helpful to utilize many different types of mind/body relaxation techniques. The more we learn about chronic pain in general, the better the research will be towards treating all of the genital pain syndromes.
With what other “sexual “disorders can PGAD be classified?
Because PGAD is a pain disorder, it influences all the other sexual disorders. If a woman is experiencing genital pain, it is obvious that she will also have diminished sexual desire and arousal, and that she will be less and less interested in allowing her body to be stimulated to any type of orgasmic response.
Is there any similar disorder in men?
It has not been clear whether there is a similar disorder in men. (Priapism is an uncommon disorder of unwanted non-sexual penile erection that can be painful, but is largely considered to be due to vascular abnormalities. Also it is not analogous to PGAD because that would have to be the occurrence of unwanted multiple ejaculations, and I do not know of such a disorder).
Nonetheless, in some of the male patients in our clinic who also have IC/PBS, I have found at least several men who describe onsets of urethral sensitivities that feel to them as if they might have an ejaculatory response in totally non-sexual situations. There definitely needs to be further investigations about the various manifestations of pelvic and genital pain in men. We also receive descriptions and requests for help on our website from other men who have been having very similar symptoms and experiences
My own personal sense with male patients is that PGAD manifests in the same combinations of issues that women experience – that is – of Painful Bladder Syndrome/Interstitial Cystitis, Pelvic Floor Dysfunction, and Pudendal Neuralgia.
Should PGAD be officially recognized in the next edition of the Diagnostic and Statistical Manual of Mental Disorders?
Based on what I have already stated, I think that PGAD should NOT be listed as a “mental disorder” at all. PGAD certainly can create mental and psychological problems in the individual with the problem, but I strongly disagree that PGAD is a mental illness or “all in your head.”
The more I work with women (and now some men) with variable degrees of PGAD, the more I am coming to believe that this condition may be more common than we think. The combinations of painful bladder syndrome/interstitial cystitis (PBS/IC) and genital pain disorders such as vulvodynia, vulvar vestibulodynia, pudendal neuropathy, and even skin conditions such as lichen simplex and lichen sclerosis, are very common in the world of Chronic Pelvic, Genital, and Sexual Pain Disorders. I am recognizing that numbers of women may go through incremental stages of “under the radar” bladder and urethral sensitivities, along with early pudendal neuralgia symptoms, during which time they may initially feel more “arousal” intensity starting with genuine sexual activity. Later the increased sensitivity begins to turn to an “annoyance”, “discomfort” and various descriptions of pain, burning, pressure, cramping, stabbing, and worse.
At the same time these women may discover that the pleasure sensation that has become more irritating may be related to urethral and bladder sensitivity. A large number of the women we see with pain related to sexual activity often will tell us that they can achieve arousal and even orgasmic response, but then “pay for it” for hours or even days thereafter. They then start wondering why they are losing their libido and start to avoid genital and sexual contact. We generally have to remind them that “why should their body want to go down that path, when their unconscious mid-brain is shouting out at them saying that the pleasurable arousal is commonly a signal for impending pain”.
I have begun to understand that there may be a fine line between pleasure and pain in many of these chronic pelvic pain patients. If the pudendal nerve branches innervating the entire vulva are more and more “dialed up” in their signaling and this is also associated with a sensitive and tender urethra and bladder, then vaginal intercourse may turn from pleasurable and even orgasmic to pain and aversion. For those women who can achieve orgasmic response, only to “pay the price”, the physiology of spasmodic contractions of an already fatigued and tender set of pelvic floor muscles causes even more pain and cramping that may last for some days following orgasm.
Also, many of our patients with painful bladder syndrome (PBS/IC) recognize that for years they have experienced an immediate need to urinate during and following deeper penetration intercourse. Many young women are taught to “pee” following sex to avoid “UTIs”, so they train themselves to empty their bladders before and after sexual relations. However the research on PBS/IC clearly shows that a very high percentage of so-called “UTIs” following sex are really flares of the interstitial cystitis.
In the course of spending at least 2-3 hours in our initial evaluation, (with now over 1000 chronic pelvic pain patients) and listening closely to their stories, I have now started to realize that the current increasing recognition of women with PGAD is not so surprising. Almost all of the PGAD patients I am now seeing have combinations of all the symptoms that I have just mentioned. There is, in my strong opinion, direct relationships to pudendal neuralgia, both with generalized vulvodynia and provoked vestibulodynia, as well as with the urethral and bladder sensitivities associated with PBS/IC, along with pelvic floor spasm, described commonly as pulsating or throbbing.
I also have strongly suspected that the so-called “G Spot” in the anterior vaginal wall that can lead to “vaginal orgasm” in a smaller percentage of women, may indeed be the urethral sensitivity that early on in this evolving process may be the vaginal arousal sensation that can lead to orgasmic response. This type of urethral sensitivity occurs in a portion of PBS/IC patients. Only later in the process do these sensations start to become painful and are avoided.
A young woman and her husband described to us that for a period of time after a previous pregnancy, she experienced a constant state of hyper-arousal and daily felt the need to achieve orgasm to relieve this feeling. Her husband said he could not keep up with her need for sexual activity. When I asked her if it was like having an “itch that could not be relieved by scratching”, she said that was exactly what it had felt like. Interestingly, following a subsequent pregnancy, she became virtually totally unable to be aroused, lost all of her libido, and then began having increasingly severe genital and deep pelvic pain such that her entire vulva and vagina became a “no-touch zone” (as I refer to with many of our pelvic pain patients). After a complete evaluation she was found to have advanced pudendal neuralgia, vulvodynia, vulvar vestibulodynia and long term PBS/IC.
For all of these reasons I feel we should be paying a great deal more attention to these unfortunate women with PGAD, as they seem to combine all of the main elements of our “typical” chronic pelvic, genital and sexual pain patients. We will learn a great deal from them – and appropriate clinical studies should be ongoing.