29.05.2024

The cruel reality of living with ‘spontaneous orgasm syndrome’

A Los Angeles symphony-goer sparked amusing headlines nationwide over the weekend when she apparently let out a moan of passion during a concert. 

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

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

Wisconsin native Dale Decker had experienced about 100 orgasms a day, none of which were enjoyable. The first man to speak out about his experience with PGAD, Mr Decker said the condition came on in 2012 following 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 per day.

Dale Decker, 37, from Wisconsin, pictured with his wife April is the first man to speak out publicly about suffering persistent genital arousal syndrome 

Dale Decker, 37, from Wisconsin, pictured with his wife April is the first man to speak out publicly about suffering persistent genital arousal syndrome

The first man to speak out about his experience with PGAD, Mr Decker said the condition came on in 2012 following a back injury that left him with pelvic nerve damage

The first man to speak out about his experience with PGAD, Mr Decker said the condition came on in 2012 following a back injury that left him with pelvic nerve damage

Cara Anaya-Carlis, 30, endures up to six hours of sexual arousal a day and once had more than 180 orgasms in two hours, pictured with husband Tony

Cara Anaya-Carlis, 30, endures up to six hours of sexual arousal a day and once had more than 180 orgasms in two hours, pictured with husband Tony

The true number of PGAD sufferers is murky and many people who live with it may not feel comfortable disclosing their condition.

Researchers say it may affect one percent of the population, to very different degrees.

The exact cause of the condition is unknown, though there have been some reports to suggest that a drug to treat symptoms of Parkinson’s Disease called rasagiline could be a contributor.

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

These nerves receive electrical signals from the brain and relay 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 over 66 percent of women who demonstrated PGAD symptoms also had a Tarlov cyst.

Treatment for PGAD varies on a case-by-case basis, but physical therapy focused on strengthening the pelvic floor could help, as could sessions with a trained sex therapist.

It comes after an unnamed California native set the internet ablaze over the weekend when it was reported she let out an impassioned wail during the Los Angeles Philharmonic’s performance of Tchaikovsky’s fifth symphony on Friday.

Fellow concertgoers and netizens were surprised to hear the clear moan or scream, 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 enjoyed an orgasm ‘because she was heavily breathing, and her partner was smiling and looking at her — like in an effort to not shame her.’

Specifics, such as whether the woman’s orgasm was provoked or just spontaneous and unexplained remain unknown, but the news made a major splash on the internet and again raised the question of whether spontaneous outbursts of pleasure can be a bad thing.

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

She had a 10-year-old son Merrick and said she is now too embarrassed to do the school run

She had a 10-year-old son Merrick and said she is now too embarrassed to do the school run

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

Because the physical feelings of arousal come on without the associated feelings of desire for sexual gratification, people living with persistent genital arousal disorder often feel like there is a disconnect between what is happening between one’s body and mind.

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

PGAD primarily affects women, though men have been known to deal with the incurable issue as well.

Dale Decker was left isolated and homebound for years, fearful that he would suffer an embarrassing public orgasm causing him to double over in discomfort.

Mr Decker said in 2014: ‘Imagine being on your knees at your father’s funeral beside his casket — saying goodbye to him and then you have nine orgasms right there.

‘While your whole family is standing behind you. It makes you never want to have another orgasm for as long as you live.

‘It happened to me at the grocery store and when it was over there were around 150 people looking straight at me — why would I leave the house when something like this can happen.’

The condition is hard to live with, depriving Mr Decker of his ability to provide for his family. According to his wife, the condition has forced the couple to sleep in different beds at times, and they ‘don’t do things that man and wife should do.’

Even the most apparently-minor stimuli can cause a flare-up. A woman named Rachel from Atlanta, Georgia told a UK documentary team years ago that she experiences spontaneous orgasms every ‘30 seconds for four to six [or] sometimes eight hours’ every day. Simple household chores can set her off.

She said: ‘The washing machine, for whatever reason, when it goes on the spin cycle I don’t even like to touch it…The vibrations have a tendency to trigger the persistent sexual arousal, and it’ll trigger an episode.’

Like Mr Decker, Cara Anaya-Carlis was unable to work or move about the world freely without fear that she would be struck by an uncontrollable and uncomfortable orgasm attack.

Mrs 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.

At the time when Mrs Anaya-Carlis spoke about her condition in 2014, Merrick was just 10 years old.

She said: ‘When you are around children you feel like a pervert because you have all these really strong feelings rushing through your body at the same time.

‘So if imagine you can’t help out in class or go on school trips because the kids don’t understand, the parents don’t understand.

‘It has devastated 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 sufferers will experience spontaneous orgasms, though 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 what causes PGAD. In 2014, a Turkish woman with Parkinson’s was prescribed the drug rasagiline which increases dopamine levels, therefore helping to relieve symptoms such as tremors, stiffness, and slow movement.

A week after being on the medication, the woman began experiencing intense, unwanted orgasms as often as 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 do not know for certain why that drug could have caused her outbursts.

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