WASHINGTON, August 8, 2013 — Persistent genital arousal disorder (PGAD) has taken on a new name and victims have individually and collectively rejected an old name. The good news is several new studies show there are medications for treatment and surgical procedures available to help those with this disorder.
A Dutch research team which has equated the feelings and etiology of the pelvic region to Restless Leg Syndrome (RLS) has created the name Restless Genital Syndrome (RGS) for what previously was called PGAD. A term used by many physicians is Persistent Sexual Arousal Syndrome (PSAS), but victims claim the arousal is far from sexual and can be very painful, irritating and unquenchable, thus they reject the sexual nature of the description.
Victims, many researchers and medical practitioners reject the notion that PGAD is psychological in source and are disturbed that the new Diagnostic and Statistical Manual of Mental Disorders fifth edition (DSM 5) included PGAD.
The various names are an indication of how divided researchers and the medical fraternity are from agreeing exactly what the syndrome is. Here are the latest studies and for the unfamiliar, some older yet heartening pertinent study results.
There exists a plethora of causation for PGAD, and what initiates the disorder for one person may be irrelevant to the next. A group support website founded and run by Jeannie Allen at www.psas-support.com has an abundance of information and mutual supporters who speak with a collective voice.
A 2009 Dutch study has a bit of a different take on PGAD with limited study participants yet yielded some drastic results that encouraged researchers to apply the RLS type of neuro-disorder to PGAD and came up with RGS. In the Dutch study, laboratory and psychiatric elements of the participants were ruled out prior to the study and interestingly, the women in the study had difficulty accurately describing the feelings.
RLS is very difficult to describe other than an unwanted, out-of-control feeling temporarily assuaged by exerting forces on the legs so PGAD may be a sister syndrome. Most of the women in this study had either RLS and or overactive bladder along with PGAD.
This study suggests the medications for treatment are 0.5-1.5 mgs of clonazepam, which was successful in 56 percent of the participants, 10 mgs of oxazepam and in conjunction, a somewhat non-narcotic analgesic called tramadol at 50 mgs. These medications can be taken several times daily.
In every case, the study confirmed that PGAD, or RGS, was not a sexual driven excitability of the genitals and the subsequent act of overcoming the symptoms via physical manipulation is not a sexually driven response.
Dr. Robert Echenburg, founder of the Institute for Women in Pain located in Bethlehem PA, strongly posits an umbrella issue called chronic pelvic pain (CPP) and PGAD are pain issues triggered by common dysfunctions of the urinary bladder, bowel or gynecological issues. He suggests other issues such as accidents, surgeries, child birth and sports traumas can act as triggers creating hypersensitivity for PGAD. Dr. Echenburg also agrees PGAD is not a sexual disorder but a “Sub-set of a much larger and quite prevalent group of disorders”
Dr. Echenburg narrows the definition of PGAD as a neurologic disorder associated with a common disorder called Vulvodynia or pain in the pelvic region and or pudendal neuralgia which is a peripheral neuropathy involving the nerves that supply the entire vulva including the nerves to the clitoris and “nerves fire off when they should not be.”
In his opinion, all women with PGAD have pudendal neuralgia, pelvic floor dysfunction (clenching of pelvic floor muscles) with most women having combinations of bladder, bowel and or reproductive system issues.
Rutgers University research by Dr. Barry Komisaruk, Distinguished Professor of Psychology, along with Rutgers colleague Dr. Huey-Jen Lee, has studied a relationship between PGAD and what is known as Tarlov cysts after a colleague’s wife had an MRI showing Tarlov cysts; she had PGAD.
Dr. Komisaruk contacted Jeannie Allen and enlisted 18 volunteers that report PGAD and gave them a MRI and found 12 of the 18 participants, or 66.7 percent have Tarlov cysts. Only 1.2 to nine percent of the general population has Tarlov cysts which may be a contributing explanation why the prevalence of PGAD is so low.
The problem here is treatment. Tarlov cysts have their own nerves and tender walls and are very difficult to remove. Such cysts may be a result of surgical procedures.
Regardless of the focus and direction of research and empirical data, it would appear each approach shares the opinion that PGAD is not somatic, or in the mind, does not belong in the DSM and is not a sexual disorder. As a note, there is evidence that abrupt withdrawal of serotonin reuptake inhibitors, anti-depressants known as SSRIs, can create an onset of PGAD.
Each approach also share the opinion that PGAD is comorbid or ‘along with’ other pelvic region issues and does not stand alone. When research takes three separate types of studies and approaches to a specific disorder yet yield similarities, this is a good thing.
There is valid research that sufferers of PGAD had their symptoms ameliorated by the application of beta-blockers, drugs that assuage the sympathetic nervous system and restore neuro-balance. Other sufferers of PGAD had their symptoms eliminated by the application of varenicline or Chantex that is usually prescribed to help folks stop smoking.
A very interesting and perhaps promising drug could be gabapentin AKA Neurontin. Gabapentin is extensively for neuropathic pain, including hot flashes, diabetic nerve pain or neuropathy, pain from fibromyalgia, migraines and seizures. Off label use is reduced pain for multiple sclerosis, itching from renal failure, overall neuralgia and anxiety for bi-polar.
Gabapentin works on what is known as voltage-dependent calcium channels which basically, effect action of neurotransmitters and hormones by reducing excitability via calcium currents. Gabapentin is thought to affect the growth of new, unwanted nerve synapses. In short, gabapentin calms nerves, halts unwanted nerve sensations and blocks peripheral nerve pain.
Dr. Komisaruk has tried gabapentin on two sufferers of PGAD with no effect; however, Dr. Komisaruk claims this is not a large enough participant pool to draw any conclusions from and explains gabapentin needs further study.
To summarize: Available medications that have a proven track record are: Beta-blockers, clonazepam, oxazepam, tramadol (adjunctively) Chantex and trying gabapentin may be the answer. Gabapentin may be taken with most of the other medications adjunctively generating a one-two or even three punch delivery. Gabapentin may be taken with clonazepam and tramadol and all three can be taken together.
These combinations may be an answer for many people and the medications can be taken several times daily.
It seems no one medication works for any specific person so each one should be tried in the hope of getting relief and determining which one works for you. Talk to your doctor to see if he/she understands your issue or find one that does and present this research for their edification.
Paul Mountjoy is a member of the American Psychological Association and the Association for Psychological Science.
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