May 11, 2006 — -- In one of the more provocative episodes of "Grey's Anatomy," the hospital staff was stumped when a young woman came in having what first appeared to be seizures ... but turned out to be orgasms.
They smirked and giggled. There was even a touch of envy as the interns gaped at their patient. As bizarre as it seems, though, the story line is based loosely on a real though rare disorder called persistent sexual arousal syndrome, or PSAS. A 2001 study published in the Journal of Sex and Marital Therapy was the first to identify it, citing "persistent feelings of sexual arousal in the absence of sexual desire" that are "intrusive and unwanted." Since that study, however, word has been very slow to get around.
Nancy Brown said her life was devastated about six years ago by the onset of unrelenting, unwanted, sexual arousal.
"It was so intense I couldn't concentrate on anything else -- only the desire to have sex with someone who isn't there," she said.
Nothing relieved the symptoms. Nancy says she turned over all the household chores to her husband, Glen Brown, and fell into a deep depression.
"I was embarrassed, I felt shame. And there's no help. There's nothing," she added.
Sleepless for nights on end, she said, her symptoms even brought her to the brink of suicide. "I told him that he didn't deserve this, my kids didn't deserve it, they didn't deserve to live this way and I couldn't go on with it anymore," she said.
Heather Dearmon understands Brown's desperation. She had just gotten married and was pregnant with her son when symptoms of PSAS began for her.
"I woke up one morning, and I just felt these strange sensations," she said.
Though she had no sexual desire, she had to bring on an orgasm to get any relief from the constant pressure. But relief didn't last.
"As time went on, the sensations grew stronger, and it would take me longer and longer to be able to achieve orgasm," she explained.
But the relief was only temporary.
"It got to the point where I was having it in the morning. I would make it go away for an hour or so. It would come back. I would have to masturbate again. And I would actually be crying while I was masturbating. There was no pleasure in it at all," she said.
Dearmon's life was turned upside down. She no longer went out. She couldn't take care of the house or her son. Frantic, she looked to her gynecologist, who sent her to a psychotherapist.
What followed, Dearmon said, was a series of visits to doctors and therapists, with no results. She became suicidal and had two stays in psychiatric hospitals, which, she said, only made her feel worse.
"The psychiatrist there suggested that I was sexually suppressed and maybe I should try lesbianism. And then the nurse there got very upset with me. And she said, 'Oh, well, I wish I could stay home and masturbate every day like you.' So, it was just a very hurtful experience," Dearmon said.
Like Dearmon, Jeannie Allen began experiencing nearly constant unwanted sexual arousal long before doctors knew what it was.
"My own gynecologist, who was a male, smiled and told me I was every man's dream. And I was mortified. I wasn't thinking about sex. I didn't have any fantasies; I wasn't involved physically with my husband. I wasn't watching anything, reading anything. But it was there," she said.
Dr. Susan Kellogg, director of sexual medicine at the Public and Sexual Health Institute of Philadelphia, has diagnosed five patients with PSAS in the past five years -- all of whom report terrible physical and emotional distress. "It doesn't have to do with sex for them. They don't have any sexual desire, thoughts, fantasies, nothing," she said.
"Women have told me that they felt that it inferred that they were hypersexual or that they were, in some way, less than honorable and, in fact, it couldn't be further from the truth. These are lovely women, usually in stable, monogamous relationships, and they are not hypersexual at all," Kellogg said.
Jeannie Allen believed she had to keep her condition secret -- even from her husband.
"It's just an embarrassing thing. When you don't know what's wrong, how are you going to explain it to your partner? I knew he would probably feel he wasn't enough for me, [that] he didn't satisfy me. So I didn't tell him. I took a soulmate that we had everything in common with, that we did everything together with, and just told him I wasn't happy anymore. That I wanted a divorce," she said weeping.
Lisa Martinez, a nurse and an attorney, created the Women's Sexual Health Foundation to educate women and doctors, most of whom don't know the syndrome exists.
"Typically, they're totally unaware of it, whether it's PSAS, or some of the other [gynecological] conditions," she said.
And Martinez said ob-gyn professionals aren't receiving adequate training to identify or treat the syndrome.
For now, the cause of persistent sexual arousal syndrome remains largely a mystery, except to say it differs from woman to woman. Treatment has been just as elusive.
"There is no percentage of wellness for instance, like 50 percent get better on a given medication. We don't have enough patients with this syndrome yet to have done research. … We don't have any funding to do the research right now. And so every woman is treated as an individual case," Kellogg said.
Since PSAS was identified in 2001, about 400 women have been diagnosed with the condition. But Allen says just finding out she wasn't alone was an enormous relief.
"I just burst into tears, because it validated that I knew that there was something wrong, and it wasn't in my head," she said.
Allen then started a support group on the Internet so PSAS patients could share stories and what little information about treatments could be found. Dearmon's husband read about the Web site in the newspaper.
It was a much-needed source of support for Dearmon.
"It was a good day. I mean, I was crying as I was reading their testimonies. You know, some of them had the exact same story as me," she said.
As for treatment, Dearmon says she found moderate relief with the popular antidepressant Paxil. She is no longer a slave to her condition.
"If the sensations were from one to 10, and 10 being the highest, it kind of stops it at 7, so it's not where I'm completely losing my mind," she said.
Brown has tried about anything anyone has suggested, including some drastic measures.
"Approximately 18 months ago I underwent nerve decompression surgery. I even went through electro-convulsive therapy," she said.
She ended up getting 42 electric shock treatments, and suffered severe memory loss as a side effect, but her symptoms have diminished only a little. "It's livable; I can do things and not constantly feel it. But it's there 24 hours a day; it never goes away for me.
Allen said her best hope is to bring attention to PSAS in the medical community, so that research to find the cause and cure for her misery can begin. In the meantime, she has a message for doctors who may still be in the dark.
"We want our doctors to know we're not crazy, it's not in our heads, that it does exist and to pay attention. Don't dismiss us just because it wasn't in your textbook. Maybe you ought to put this one in yours. That's what I would tell them."