The cruel reality of living with ‘spontaneous orgasm syndrome’

A Los Angeles symphony attendee made funny headlines this weekend when she apparently let out a moan of passion during a concert.

The report went viral worldwide, leading some to wonder if she suffered from a medical condition that made her overly sensitive to sexual arousal.

While it’s still not clear what triggered the woman’s outburst, a small number of people are plagued by a debilitating condition called persistent genital arousal disorder (PGAD), which causes spontaneous orgasms independent of sexual stimulation.

A native of Wisconsin, Dale Decker had experienced about 100 orgasms a day, none of which were pleasurable. Mr Decker, the first man to speak out about his experience with PGAD, said the condition came on in 2012 after a back injury that left him with pelvic nerve damage.

And Arizona native Cara Anaya-Carlis, who was also diagnosed with PGAD, once said she endured more than 180 orgasms in just two hours and would live in a heightened state of sexual arousal for up to six hours a day.

The actual number of PGAD patients is murky and many people living with it may not feel comfortable disclosing their condition.

Researchers say yes affect one percent of the population, to varying degrees.

The exact cause of the condition is unknown, although there are some reports suggesting that a drug for treating the symptoms of Parkinson’s disease called rasagiline might contribute.

Other research has shown that the condition may be caused by Tarlov cysts, fluid-filled sacs caused by trauma or injury, usually found at the bottom of the spine on what’s called the sacral nerve root.

These nerves receive electrical signals from the brain and transmit these instructions to the bladder, colon, and genitals.

A 2012 study published in the Journal of Sexual Medicine used MRI test results to show that more than 66 percent of women who presented with PGAD symptoms also had a Tarlov cyst.

Treatment for PGAD varies from case to case, but physical therapy aimed at strengthening the pelvic floor can help, as can sessions with a trained sexologist.

It comes after an unnamed California resident set the internet ablaze over the weekend when it was reported she let out a passionate wail during the Los Angeles Philharmonic’s performance of Tchaikovsky’s Fifth Symphony on Friday.

Fellow concertgoers and netizens were surprised to hear the distinct moaning or screaming, as one person put it, which they attributed to an orgasm.

Spectator Molly Grant told the LA Times that the woman who made the noise appeared to have had an orgasm “because she was breathing heavily and her partner was smiling and looking at her — as if she didn’t want to disgrace her.”

Details, such as whether the woman’s orgasm was provoked or just spontaneous and unexplained, remain unknown, but the news caused quite a stir on the internet and once again raised the question of whether spontaneous bursts of pleasure could be a bad thing.

Sufferers of a condition characterized by frequent unwanted orgasms and/or consistent physical arousal will say that yes, those outbursts can be a major detriment to daily life.

Many people who experience PGAD live in a constant state of excitement that can cause uncomfortable genital swelling and tingling, and the condition can generate unwanted attention and embarrassment, forcing sufferers to hide with feelings of shame.

Because the physical feelings of arousal arise without the accompanying feelings of desire for sexual gratification, people with persistent genital arousal disorder often feel that there is a disconnect between what is happening between a person’s body and mind.

The sensations in the genitals affected by PGAD have been described in various ways, including pressure and fullness, pulsating, burning, and itching.

PGAD mainly affects women, although men are known to deal with the incurable problem as well.

Dale Decker was isolated and housebound for years, afraid he’d have an embarrassing public orgasm that would make him double over with discomfort.

Mr Decker said in 2014: ‘Imagine sitting on your knees at your father’s funeral next to his coffin – saying goodbye to him and then you have nine orgasms.

‘While your whole family is behind you. It will make you never want to have an orgasm again as long as you live.

“It happened to me in the supermarket and when it was over about 150 people looked straight at me – why leave the house when something like this can happen.”

The condition is difficult to live with, leaving Mr. Decker unable to provide for his family. According to his wife, the condition has sometimes caused the couple to sleep in different beds and “they don’t do things that husband and wife should be doing.”

Even the most seemingly insignificant stimuli can trigger a flare-up. A woman named Rachel from Atlanta, Georgia told a British documentary team years ago that she experiences spontaneous orgasms every 30 seconds for four to six seconds. [or] sometimes eight hours a day. Simple household chores can mess her up.

She said, “The washing machine, for whatever reason, when it’s spinning, I don’t even like to touch it… The vibrations tend to trigger the lingering sexual arousal, and that will make an episode cause.’

Like Mr. Decker, Cara Anaya-Carlis was unable to work or move freely about the world without fear of being hit by an uncontrollable and uncomfortable orgasmic attack.

Ms Anaya-Carlis, who has a son named Merrick with her husband Tony, said she avoided being in open spaces and often felt too embarrassed to tell a potential employer about the condition.

When Ms Anaya-Carlis spoke about her condition in 2014, Merrick was just 10 years old.

She said, “Being around kids makes you feel like a pervert because you have all these strong feelings racing through your body at the same time.

“So if you can’t help in class or go on a field trip because the kids don’t understand, then the parents don’t understand.

“It has destroyed my involvement in my son’s life because I feel too dirty to be a part of it. We want him to be a normal kid, but at the same time he can’t have friends around because mom has this condition.”

Not all PGAD patients will experience spontaneous orgasms, although about a third of them do. About half of those with PGAD also say the condition is painful.

The condition is not well understood and little is known about the cause of PGAD. In 2014, a Turkish woman with Parkinson’s was prescribed the drug rasagiline, which increases dopamine levels, relieving symptoms such as tremors, stiffness and slow movements.

A week after taking the medication, the woman began experiencing intense, unwanted orgasms three to five times a day, lasting between five and 20 seconds each time.

The symptoms stopped when she stopped taking the medication, but scientists aren’t sure why that drug might have triggered her outbursts.