Medical Mystery: Persistent Sexual Arousal Syndrome

Feb. 21, 2008 — -- If you thought "Grey's Anatomy" writers invented Persistent Sexual Arousal Syndrome (PSAS), think again.

PSAS, identified and named just six years ago, remains a mysterious condition that thousands of women wish they didn't have. They are constantly on the edge of orgasm regardless of time, place or circumstance. And while this situation might sound desirable, funny or just plain weird it is actually akin to being a prisoner: a nightmarish reality where a woman's body acts independently of her own desires.

ABC News spoke with four women who all experience unwanted sexual sensations. Heather Dearmon, Nancy Austin, and two women who requested anonymity (referred to as Lauren and Emily) all suffer from unintended sexual arousal.

"It's unwanted sexual sensations in your vagina," Dearmon said.

"And sex doesn't help it," Lauren said. "Orgasm doesn't relieve it, sometimes it makes it stronger. This is to me, irritating, torture."

"You spend a lot of time avoiding situations that will set you off," Austin chimed in.

Dr. Irwin Goldstein, a professor of surgery at UC San Diego and the head of the Sexual Health Program at Alvarado Hospital, is one of the few researchers studying it.

"It's spontaneous, intrusive, and unwanted genital arousal — consisting of throbbing, pulsing or tingling without the person's sexual interest or desire," Dr. Goldstein said.

Searching for the Cause

Dearmon, Austin, Lauren and Emily searched for years to find out what was wrong but their doctors couldn't help them.

"I thought I was alone in this," Dearmon said. "And this is after seeing every kind of doctor imaginable, gynecologist, psychologist, psychiatrist — you know, everything. And none had ever heard of anything."

The medical consultations were not only confusing but, at times, condescending. Dearmon said one of her doctors told her to get a hobby, and another doctor suggested she become a lesbian.

Dr. Goldstein thinks thousands of women may suffer from PSAS, but the actual number is not known because so few seek a doctor's help -- and most doctors do not know about it.

"Every lecture I give on this, there's always smirks in the audience: 'Oh I wish my wife was like this.' These are professional physicians," Dr. Goldstein said. "And I said, 'No, no, you're, you don't really want this. You do not want your wife to have this, please.'"

Constant sexual arousal is not due to raging hormones. In fact, it isn't at all sexual in nature. Nobody really knows what causes this strange ailment, or what sets off these sensations.

"Is it coming from the brain? Is it coming from the body? Is it, is it a nerve?" Emily asked.

Men can have a similar problem with unwanted and prolonged arousal called Priapism, which is an engorged penis lasting for more than four hours. In males it is a medical emergency that includes complications such as blood clots and gangrene.

PSAS affects women differently, but the impact upon their lives can be equally devastating.

"Their genitals are aroused 24/7, 365 and they can't concentrate," Dr. Goldstein said. "They can't work. Anything that moves or vibrates will lead them into orgasmic release."

Dearmon was one of those women who had symptoms day-in and day-out. "It's like it's living on its own, with its own mind," she said.

Living with the Symptoms

Dearmon and her husband Jeremy have been dealing with PSAS since it began during her pregnancy 12 years ago.

"I felt like I lost myself," Dearmon said.

At first, they thought the sensations would stop when she gave birth. Instead they intensified, lasting 24 hours a day. Dearmon found only one way to stop them.

"I was masturbating in the morning, in the afternoon, and at night," Dearmon said. "I would be crying while I was, you know, masturbating because — nobody wants to do that all day long."

Dearmon is not a nymphomaniac: none of these women are. They hate the constant sexual arousal. Pinpointing the cause is difficult but Dr. Goldstein thinks one source may be a brain reflex gone awry.

"You could visualize at some level that this is a form of recurrent seizure activity — an area of the brain that activates without the person's permission," he said.

Brain scans of patients have turned up nothing yet, but the research is continuing. Without knowing the cause, treatment can be difficult, especially because the syndrome varies among patients.

Dearmon's PSAS began in pregnancy but Lauren's problem has been lifelong.

"I can remember episodes when I was three," Lauren said.

Emily's PSAS also began when she was a toddler. She remembers always moving her legs to stop the "itch."

"I always knew it wasn't normal — but I knew nothing else," Emily said.

Austin's PSAS began after menopause. Her doctor tried to block the nerves to her genital area, via an extremely painful process. But even that didn't work.

The women who suffer often resort to home remedies in an effort to get some relief.

"We have a woman who ices a condom and puts the condom in the genitalia to basically survive the day," Dr. Goldstein said.

Nancy tried ice, but found it too cold. Dearmon has also tried ice, and creams, but to no avail. PSAS still found a way to intrude on their lives. It even ended Lauren's relationship with her boyfriend

"I'd go sleep in the other room so I wouldn't wake him up with my thrashing," Lauren said. "You're flapping around, your legs are moving just to — it's like a tickle that you can't get to."

Lauren tried using vibrators but they only provided temporary relief.

"It works at the moment, but as soon as you stop, it's right back there again," she said.

And as she gets older, the symptoms get worse.

"Now it's every night," she said. "I don't sleep for days sometimes, maybe an hour at about five in the morning."

"I just want to sleep," Lauren said tearfully. "I just want to be normal. I want to sleep. That's what I want."

"It's Not Something We've Chosen"

Nancy said she wouldn't wish this on her worst enemy.

"You don't make fun of people who are sick," Dearmon said. "To me this is a sickness. This is not, it's not something we've chosen."

All of the women told "Primetime" it was not a yearning for sex.

Some women are so desperate to end PSAS they try electroshock therapy. So far it has produced uneven results, but Dr. Goldstein thinks it is helping "re-set" the brain in at least one of his patients.

"The electroconvulsive therapy causes her to re-regulate her sexual reflex, and she no longer has PSAS," he said.

Dearmon said if she knew for sure the electric shock therapy could work she would try it. She has even considered surgery "just to cut everything off down there."

"I would rather never have another orgasm in my life for the rest of my life — than to have this problem," she said.

Dr. Goldstein is also experimenting with a new drug that affects the brain's dopamine levels. So far it has shown some success, but more research will be needed to decide if it is effective.

Desperate Measures

Dearmon, a poet and artist, kept trying to tame what she called her "beast." But the beast kept winning until she decided there was only one way out -- to take her own life.

"I was going to commit suicide, I mean it was that bad," Dearmon said.

"She just really got to the end of her rope," Jeremy said.

Frightened by her suicidal thoughts, Dearmon committed herself to a psychiatric hospital

"And the nurse came in and said, 'Honey, I wish I could stay home and masturbate all day long.' I'm like in the psychiatric ward because I'm going to take my life and, and here you are belittling me," Dearmon said.

And then one day, while glancing at a magazine at the barbershop, Jeremy discovered an article that described his wife's symptoms exactly.

"She immediately started crying — like oh my God, you know, I'm not alone," Jeremy said.

Dearmon now takes an anti-depressant. It doesn't work for everyone with PSAS, but it does help reduce her symptoms to a more manageable level. Even so, PSAS permeates every aspect of her life and marriage. Because sex triggers even stronger symptoms Dearmon sometimes avoids it altogether.

"I would tell him that, you know, I, I was having my problems bad," Heather said.

"You can't fix it, so it's like, hard, you know, hard to respond sometimes," Jeremy said. "It's not like he couldn't satisfy me sexually," Dearmon said. "It had nothing to do with him, there was just something going on in my body that I had no control over."

"We can only be affectionate at certain times so there's not like the casual kissing for us, so yeah, we need to take that easy," Jeremy said. "That's part of dealing with our — problem."

Despite PSAS Dearmon and Jeremy remain committed.

"I believe we're honestly happily married — it's what we still choose, you know, we love one another," Jeremy said.

For more information about PSAS please visit the Persistent Sexual Arousal Syndrome Support Group, or the San Diego Sexual Medicine Web site, and click here to read stories written by women for women who have suffered from sexual dysfunction.