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.