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When being turned on is a turnoff

By Elizabeth Landau, CNN
Some women with persistent genital arousal disorder say stress aggravates their symptoms.
Some women with persistent genital arousal disorder say stress aggravates their symptoms.
  • Persistent genital arousal disorder causes frequent feelings of unwanted arousal
  • The condition, while documented in case reports, is poorly understood
  • Some patients have had to quit work because of the constant distraction
  • There is no one treatment that works for everyone with the condition

(CNN) -- Renee Rhodes stopped working for nine months last year for reasons she didn't quite understand.

She felt the unrelenting sensation of "internal itching" in the palm of her left hand, the bottom of her left foot and between her legs. The recurring arousal was not welcome -- it would not stop nagging, no matter what she did about it. It became so all-consuming and distracting that she contemplated suicide.

"It felt like you had to have an orgasm all the time," she said. "No matter how many orgasms you had, it would still bother you or even get worse."

Rhodes, 34, turned to the Internet and found that her predicament had a name: persistent genital arousal disorder. She went to see Dr. Irwin Goldstein in San Diego, California, who confirmed the diagnosis and gave her medication that helped.

The Internet has been buzzing this week about a British tabloid's report of a woman with a similar complaint, which she says resulted from falling from her Nintendo Wii Fit board.

Despite skepticism surrounding the report, and the giggle-factor, doctors say persistent genital arousal disorder is a real and tragic illness for those who have it. The condition has also been depicted on the ABC medical drama "Grey's Anatomy."

Persistent genital arousal disorder can develop from a physical injury, said Goldstein, director of sexual medicine at Alvarado Hospital in San Diego, California, who also oversees the peer review process for the Journal of Sexual Medicine.

If the nerve called the pudendal nerve, which goes to a woman's clitoris, is irritated, she will feel pulsing and throbbing all the time, and feels relief only with orgasm. But after orgasm, the arousal could return minutes or even seconds later, and the cycle can repeat all day.

"For people who have this, it's an unbelievable, horrible situation," Goldstein said. "It's not as rare as we once thought and really causes distress to people."

Goldstein, who has hundreds of patients with this disorder, estimated it affects thousands of women. There is an equivalent condition in men, but it is far more rare, he said.

The condition, while documented in case reports, is poorly understood, said Lori Brotto, assistant professor of gynecology at the University of British Columbia. There has been little systematic research into what really causes the problem.

Because of this lack of study, the condition is not being considered for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, said Brotto, who is on a committee to revise this guidebook for mental health professionals.

A woman could get persistent genital arousal disorder through physical damage, as reported in the British case, but more commonly women experience it after abruptly stopping antidepressants called selective serotonin reuptake inhibitors (SSRIs), Goldstein said. Rhodes had been taking SSRIs, and stopped them before her symptoms of unwanted arousal began.

These drugs change the balance of chemicals in women's brains, Goldstein said. SSRIs have been shown in some people to cause diminished libido.

Women with the condition experience constant distraction and embarrassment, Goldstein said. Doctors who have it will have an orgasm in the middle of speaking with patients; teachers with it fear accusations of sexual deviancy from parents of their students, he said.

Having received a diagnosis and treatment -- a pain medication called Tramadol -- Rhodes' symptoms have generally subsided, and she's working as a billing specialist in a law firm. She tries to keep her stress level down because stress aggravates unwanted arousal, and skipping her medication can also bring it back.

But there is no one treatment that works for everyone with the condition, just as there is no one cause, Brotto said. Some women have been told to stop medications, others to start them. Those like Rhodes who have stress-related symptoms may find relief in meditation and breathing techniques, Brotto said.

One patient of Goldstein's became suicidal and could not take care of her children or work; she went through electroconvulsive therapy, and that has helped, he said.

Rhodes said she has told her parents, friends and boyfriend about her condition, and they have all been supportive.

"At first, they were all like, 'I would love for that to happen to me,' and then you're like 'no, no, you don't understand,' " she said.