Persistent genital arousal disorder brings woman agony, not ecstasy gas nozzle stuck in car

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The sensation was akin to sexual arousal. But this was far from the pleasurable feeling that people associate with sex. It was not triggered by love, or lust for the boyfriend who would soon arrive to drive her to an appointment. It was unbidden and unwelcome. Over the previous 16 years it had turned her from an outgoing young woman with an active romantic life into a hermit, forced to masturbate for hours for just a few minutes of relief.

Our bodies betray us in so many ways, as anyone who has endured a chronic illness knows. One day you’re a mom and a lawyer and the next you’re lying in a dark room, rigid with a migraine. But no one laughs at you for that. Rupture a disc and you’ll get sympathy and paid time off work. Most people with cancer aren’t ashamed to tell their parents they need chemotherapy.

It is the same house she lived in when she was 12, when her parents moved to Spring Hill from Wisconsin. She had grown up taking piano lessons and singing in the church choir. She was a high school honor student. She earned a bachelor’s degree in Spanish at the University of South Florida and spoke French and German, too.

She struggled to keep even the most menial jobs. She sold sterling silver jewelry, took messages for a medical answering service, monitored alarms for an alarm company, answered phones at a tanning salon. But at each job, she was spending so much time alone in the bathroom that it affected her performance, and even when her bosses didn’t complain she convinced herself everyone knew and she couldn’t live with the embarrassment. By 1999, she’d given up on working.

She didn’t get outside the house often, but she made the most of the opportunities that presented themselves. She met one man after he called her number by accident. She met another man when she was buying cold medicine. A third responded to her ad on Craigslist. Seeking someone into trench coats, rainy nights and romance was the headline.

Without telling her family the real reason, Gretchen went to a urologist, a gynecologist, a gastroenterologist, a neurologist, a reproductive endocrinologist, a psychiatrist. She underwent diagnostic procedures involving tubes and cameras. She tried hypnotherapy and prescription drugs.

Over time the repetitive motions took a toll on her body. She developed interstitial cystitis, an inflammation of the bladder wall, and urethritis, an inflammation of the urethra. One doctor said the pain in her wrists and hands was carpal tunnel syndrome. Another said she had obsessive compulsive disorder.

There was the 36-year-old mother, with three kids under 6, who had to stimulate herself to orgasm in sets of six. The 81-year-old whose arousal had begun six years earlier, following a hysterectomy; she had exhausted her husband, who had a weak heart.

The rare syndrome, which doctors estimate affects thousands of women, seems to violate one of the basic elements of human sexuality: our ability to control our sexual lives. In essence, it makes desire irrelevant, stripping away all psychological pleasure from sex and leaving only the mechanics of arousal.

No single area of the brain is responsible for sexual response, and much is still unknown about the process. But when the vagina or the clitoris is stimulated (the clitoris alone has 8,000 nerve endings), sensory impulses travel up the spinal cord to the sensory cortex, a thin band of nerve cells that straddles the brain like a set of earmuffs. The brain interprets the sensations and issues new commands, producing increased heart rate, more blood flow, a lubricated vagina.

" 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. 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 . . .

"You have to ignore it, Gretchen. YOU DON’T HAVE A CHOICE. STOP NOW. Just let your body calm down. Many times, I’ve tried that. 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.

"Men don’t understand it. They don’t care. They think it’s hot . . . When I describe it to men, I tell them, ‘Imagine having an erection that does not go down, that feeling of just before it comes out, all day, all night, no matter how many times, no matter how much you’ve destroyed the skin on your penis.’

Research by behavioral neuroscientist Barry Komisaruk of Rutgers University in New Jersey indicates that for some women it may be caused by something called a Tarlov cyst, a tiny fluid-filled lump that attaches to genital sensory nerves where they enter the spine. Cutting the cyst away from the nerve risks causing incontinence, he said, but he wonders if deflating the cyst might work.

In June, Dr. Irwin Goldstein, director of sexual medicine at Alvarado Hospital in San Diego, who treats 200 women with the disorder, was part of a team that implanted a kind of pacemaker in the buttocks of a retired high school English teacher.

The device was attached to one of her genital sensory nerves. If she wanted the arousal to stop, she turned the electrical impulses on with a transmitter. If she wanted to have sex with her husband, she could turn it off temporarily. It worked. It also cost $68,000, most of which she paid for by cashing out part of her retirement plan.

Gretchen has been prescribed antidepressants and Ambien, a sleeping aid, which she has at times paid for with Medicaid but most often with private donations. But her lack of medical insurance makes treatment for the condition that has destroyed her life financially impossible.

One day last March, Gretchen duct-taped the pool hose to the muffler of her car. She turned on the ignition and sat there while a Three’s Company episode played on her DVD player. The carbon monoxide gave her a pounding headache. She spilled out of the car.

The documents also referred to her mentally disabled brother who was no longer in her care. At one point, because she had no other options, her brother’s Social Security disability check had supported both of them. The judge said Gretchen was seeking disability for "pecuniary gain."

Gretchen’s lifeline right now is her boyfriend, the one she met on Craigslist. They have broken up several times. He said that he loves her, but she worries that she can’t count on him to pay her bills forever. She owes property taxes on her house this month and she doesn’t have the money.