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FLORIDA - For most people, sex is a pleasurable thing. But not so for Gretchen Molannen.
For 16 years, she suffered from persistent genital arousal disorder (PGAD) where she would get debilitating orgasms, characterised by physical symptoms accompanied by overwhelming anxiety, but no psychological arousal.
Her condition was so bad, that the only way she could get relief was to lock herself up in a room and masturbate for hours upon end.
She described the sensation she gets as a "brain scream", where her brain tells her she needs to compulsively sexually stimulate herself. She needed a minimum of eight climaxes before her brain will calm down.
On a particularly bad day, she had 50 uncontrolled orgasms in a row. "It made me think I was going to die," she said.
>Link Info : General Issues - Persistent Genital Arousal Disorder (PGAD)
She could not hold down a job. Fluent in French, German and Spanish, she dreamed of working as a translator, but her persistent needs from the disorder meant she had to take long breaks from work, affecting her productivity.
She took menial jobs, such as selling jewellery, taking messages and answering phones. However, even when her bosses did not complain, she couldn't live with the embarrassment of needing to take long toilet breaks to relief her constant orgasms.
"I used to love life. But this has destroyed it. This isn't living. What's the point? I think about suicide all the time," she said.
A different life
Interviewed before she decided to take her own life, Molannen told the Tampa Bay Times that she used to have "such a different life before this thing, this beast, took over."
She grew up a normal girl, taking piano lessons and singing in the church choir. She was a straight A pupil too, having been her high school's honour student. She went to the University of South Florida and earned a bachelor's degree in Spanish.
When she was 23, she suddenly found herself getting aroused for no reason. "I was terrified. I couldn't get unaroused," she said.
She did not know what it was, nor how to get rid of it. The only relief she could find was masturbation - something Molanne, brought up as a Lutheran, abhorred.
She finally mustered the courage to go to a doctor who prescribed her ice packs, cold compresses and a milk bath. The doctor also advised her to try ignoring it. Nothing worked.
She went to a urologist, a gynecologist, a gastroenterologist, a neurologist, a reproductive endocrinologist and even a psychiatrist. She tried every therapy that was thrown at her, from prescription drugs to hypnotherapy.
In her hunt for answers, she even turned to the Internet, but it only led her to forums and websites discussing sex addiction, which she was not suffering from.
Finally in 2007, more than a decade after the onset of her symptoms, she stumbled upon the name of her condition while watching a television show.
On an episode of 20/20, a woman with wavy red hair told of her condition where her body forces her to masturbate "in the morning, in the afternoon and at night." "I would be crying, because nobody wants to do that all day long," she said.
The episode was on persistent genital arousal disorder.
Life in ruins
To many she explains her condition to, a common reaction she comes across is "most women complain otherwise", "it's hot" or just plain disbelief.
The orgasms gives her no pleasure. Describing the orgasms she experiences, she said all the physical symptoms of arousal are there; such as the genital congestion, throbbing, pulsating and pounding heart. However, the difference is the tremendous and traumatising anxiety that comes with it.
"The arousal won't let up. It will not subside. It will not relent. One O-R-G will lead you directly into the horrible intense urge, like you're already next to having another one. So you just have to keep going," she said.
"I mean, on my worst night I had 50 in a row. I can't even stop to get a drink of water. And you're in so much pain. You're soaking in sweat. Every inch of your body hurts. Your heart is pounding so hard."
She said she has tried ignoring it, to no avail. "I'd be as far as in the bathroom, going in for my reward shower. I'm done. Now it's time to clean up and relax. And I'd look at myself in the mirror and there it is again. And I'd throw myself on the floor and cry," she said.
The repetitive motions of masturbation also took its toll. She developed interstitial cystitis, inflammation of the bladder wall and urethra and even carpal tunnel syndrome.
Her relationships suffered from lack of physical intimacy. She could not have sex normally, as orgasms were like work and even physical affection made the symptoms worse. On average, she would have sex with her boyfriend four times a year.
With zero income, she could not even apply for disability help, as the court does not recognise the condition as meeting any of the criteria of the listed impairments.
Her lack of income or medical insurance meant that treatment for the condition was financially beyond her means.
On Dec 4, Molannen finally succeeded in taking her life. She had attempted suicide numerous times in the past year.
Last March, she tried to kill herself by carbon monoxide poisoning in her car. Three weeks later, she sliced her wrist in her bathroom. "I don't really want to do it, but it helps me calm down," she said.
On Tuesday, she was found dead in her home in Spring Hill, Florida. She was last seen alive on Thursday 11.30pm.
Details of her death have not been released, but according to reports, two of her friends have confirmed it was a suicide.
She had committed suicide just a day after the Tampa Bay article featuring her was published. Tragically, offers of help from readers of the article poured in too late.
Persistent genital arousal disorder
The condition causes sufferers to experience physical arousal so intense that they persist for days or weeks at a time and can at times border on pain. Certain situations, such as riding in an automobile or train, vibrations from mobile phones, and even going to the toilet can aggravate the condition.
It is not uncommon for sufferers to report a loss in the pleasure of orgasms as the release becomes associated with relief from pain.
It is unknown how many people suffer from the extremely rare condition. Experts believe that the condition is also under reported as sufferers may consider it too shameful or embarrassing to reveal.
According to the Journal of Sex and Marriage Therapy, it can be caused by a range of triggers, such as medications, going off antidepressants, starting menopause, and even a bad fall.
Nobody is really clear what causes the condition, although many medical professionals think it is caused by an irregularity in sensory nerves.
Treatment can include the use of antidepressants, antiandrogenic agents and anaesthetising gels.