Imagine being in a meeting or at your kids’ school and having an orgasm—and being unable to stop it.
When he was 18, Michael* started to feel almost constantly sexually aroused. He wasn’t always thinking about something sexual. He wasn’t turned on. He didn’t even always have an erection. But he did have an incessant, “overwhelming feeling of penile pressure, and the desperate need to ejaculate,” Michael, who’s now 28, explained.
As a result, Michael would masturbate at least ten times a day, “even after rubbing the skin of my penis raw,” straining his right arm so much he couldn’t even write with it afterwards. After he had an orgasm, the urge to get off faded only momentarily. Soon enough, he’d need to get off again. If he didn’t masturbate, the sensation would turn into sheer pain, which he describes as feeling like his pelvic region was “angry” at him.
You might think that Michael sounds like the average young guy swimming in hormones. But his compulsion was beyond anything most men ever experience. His arousal spiked with the simplest of triggers: not just a sexual thought or something brushing against the head of his penis, but sitting too long, standing on a bumpy bus, or even lifting heavy items. He’d spend much of his time lying down to avoid a potential flare-up. The stress and pain consumed him so much that he was thrown into a deep depression.
Almost a decade later, Michael still feels the constant urge to get off, even though he’s gotten better at managing the symptoms. “I live in a world of painful white noise,” he said, “punctuated only by short periods of peace.” His arousal has “consumed my life. It obscures my thoughts, my personality, my very being.”
Michael isn’t horny or sex-crazed. He suffers from Persistent Genital Arousal Disorder (PGAD), a rare condition sometimes also called Restless Genital Syndrome (RGS). PGAD is defined as involuntary genital arousal, unlinked to any sexual stimulus or clear physical genital cause. This arousal is often focused in the head of the penis, or the clitoris, vulva, and vagina, but can spread through the perineum or anus. Sufferers describe it as an infuriating itching, burning, or pins-and-needles sensation. And perhaps worst of all, the sensation does not abate more than momentarily after an orgasm. It lasts for long periods of time, either constantly or in intermittent bursts.
PGAD is likely unfamiliar to many: the condition was only documented for the first time in 2001, and there are only a few thousand known sufferers of PGAD in the world. But “it is enormously prevalent for a condition that’s so unheard of,” said Dr. Irwin Goldstein, a sexual health doctor who claims he sees a few cases a week.
No one knows for sure what causes PGAD. Doctors have suggested it might be a secondary symptom of Tourette Syndrome or epilepsy; for whatever reason, it also seems to occur often alongside Restless Leg Syndrome or overactive bladder. But we do know that it’s hardly new.
Christopher French, a professor of psychology at Goldsmiths University of London who researches paranormal experiences, suggested that the condition could be one possible explanation for the well-documented historical phenomenon of “ghost sex,” or people claiming to have sexual experiences with spirits and demons.
“Most cases of nocturnal sexual interactions with ‘ghosts’ are probably best explained as episodes of sleep paralysis,” he said. “But there there are also rarer cases of spontaneous orgasm that can occur when the experiencer is fully awake.”
“I LIVE IN A WORLD OF PAINFUL WHITE NOISE, PUNCTUATED ONLY BY SHORT PERIODS OF PEACE.”
To many in the general public, PGAD is a source of amusement; tabloids love to run smirking stories about women who spontaneously orgasm 100 times a day, and even some doctors are prone to making jokes about how wonderful it must be to be in a state of constant pleasure. For women with PGAD, it’s not uncommon to see men regularly trying to infiltrate their support groups, insisting that sex is all they need to cure their condition.
But in many cases, PGAD causes intense physical and psychological distress, leaving sufferers trapped in a vicious cycle of anxiety and pain. Many people with PGAD end up functionally disabled. Their relationships fall apart as they slowly start to link sexual arousal with pain and fear. For people with PGAD, “sex, which at one time was a loving gift, is now agony,” said Linda Cataldo, 67, a former teacher and an advocate for people with PGAD. “It is a cruel irony that those of us who loved lovemaking now fear it.”
After Cataldo was diagnosed with the condition, her symptoms became so severe that she had to quit her job. She said that it is not uncommon for people with PGAD to become depressed and suicidal, and that at least six known PGAD sufferers have taken their own lives in recent years.
“PGAD is not pleasurable,” said Cataldo. “It is life-destroying on many, many levels.”
“SEX IS NOW AGONY. IT IS A CRUEL IRONY THAT THOSE OF US WHO LOVED LOVEMAKING NOW FEAR IT.”
Currently, women like Cataldo make up the vast majority of know PGAD sufferers. Almost all medical literature and media reports on the condition focus on women; in fact, the first male case of PGAD was not even documented until 2013. But it’s unclear why this discrepancy exists: we don’t know if men simply have different neural wiring that leads to lower rates of PGAD, or if they just don’t seek help for the condition as often and are thus underrepresented. But Cataldo is in the latter camp. She believes that men “suffer doubly” from PGAD due to cultural expectations that men remain stone faced and silent in the face of suffering.
To make matters worse, some doctors still don’t believe that PGAD is an actual condition, or they insist that it doesn’t affect males in the first place. In fact, Goldstein once treated a 17-year-old boy who was told by doctors that the condition was all in his head, and that he should just take an Advil and suck it up. (The patient has since received spinal surgery, which has alleviated his symptoms.)
The condition can also be doubly embarrassing for men, simply due to the differences in the male anatomy. If a woman with PGAD has a spontaneous orgasm in public, it’ll manifest itself as “more of a facial grimace and tensing of the muscles,” according to Goldstein. But for men, a spontaneous orgasm will result in ejaculation, which is highly visible and hard to explain. “If you’re in class and you’re stressed because of an exam and you go into PGAD mode, then you’ll have wet pants,” he said.
For this reason, it’s understandable why men might not want to come forward about their conditions. They might fear that they’ll be dismissed as just horny dudes, or they might worry about being treated as animalistic, predatory sex addicts. (Imagine the tabloid headline for a hypothetical man who came out as a PGAD sufferer: “Local Man Insists He NEEDS to Have Sex with an Endless Stream of Women, for Medical Reasons.”)
When it comes to men and genitourinary conditions, there seems to be a weird double standard at play: while men can speak about their penises freely in most contexts, they often have trouble admitting when something is actually wrong with them. In a culture where your feelings of self-worth are so frequently tied up in the quality of your penis, to admit that yours is on the fritz is tantamount to self-emasculation.
“I WANT TO BE TAKEN SERIOUSLY. I JUST WANT THIS UNRELENTING PAIN TO STOP.”
Currently, most PGAD sufferers receive treatment to manage the condition, such as therapy or a mixture of prescribed medications (usually a combination of drugs to treat seizures, nerve pain, and mood disorders) to reduce the intensity of the symptoms. Cataldo also runs one of several Facebook support groups for people with the condition, which she says are vital to helping sufferers feel less alone.
Over the past few years Goldstein and Barry Komisaruk, a scientist known for his work on the neurobiology of orgasms, have developed a compelling theory for a cause and potential treatment of PGAD. Many PGAD patients, they say, have problems like cysts in their backs or herniated discs that may be irritating the roots of nerves that feed into our genitals, as well as our legs. In most cases, our brains are able to ignore these neural misfires, said Goldstein, but in some cases, our brains may interpret them as leg or back pain, genital pain or itch, or near-constant sexual arousal. (This would explain, among other things, why PGAD is often comorbid with things like Restless Leg Syndrome.)
If Goldstein and Komisaruk are right, then PGAD is treatable in the form of a specialized spinal surgery to remove whatever is causing the nerve irritation. Goldstein claims he’s successfully performed this surgery on 33 men and women with PGAD, but his research has not yet been published and disseminated through the medical world. “We believe we have a strategy for success,” he said. “[But] it’s going to take about a decade to get that out,” much less make it gospel.
But even if spinal surgery were taken as gospel by the wider medical community, Goldstein believes many people would still be forced to live with PGAD. Ultimately, our understanding of the condition, both medically and culturally, is still in its infancy; it remains taboo, not to mention especially isolating and challenging for men. That’s why people like Michael and Cataldo are pushing for greater understanding and visibility as much as they are for a cure. They don’t want anyone to suffer alone, or to be dismissed and treated as a joke.
“I want to be taken seriously,” said Michael. “I just want this unrelenting pain to stop.”
*Last names have been withheld so subject could speak freely on private matters.
From: Men’s Health US