It's not something they've talked about before. Embarrassment and fear keeping them quiet. 1,000's of women suffer from constant, unquenchable sexual arousal. They are constantly on the verge of orgasm. No amount of sex or self stimulation makes it stop.
Persistent Sexual Arousal Syndrome, or PSAS, was officially recognized as a disease 6 years ago. There is, as of yet, no known cause or cure for the illness.
Women suffering from it describe it as being in a constant state of arousal, and not in a good way. They indicate it is more like being trapped in a body that you have no control over. Living on the constant edge of orgasm is likened to existing in prison - serving a life sentence with no hope of parole. They have reportedly tried masturbation, multiple sex partners, and numerous body numbing creams and gels in an effort to make it stop, with no success.
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.
Heather Dearmon spoke with 20/20 and shared her personal story with this disease. She indicated that she has searched for years for a cure. She has shared her story with countless doctors, psychiatrists, psychologists and various medical specialists with each and every one of them indicating they had never heard of the syndrome and had no idea how to approach treatment.
The medical experts she consulted with were often condescending, if not downright rude. One told her to get a hobby, another suggested that perhaps she was a lesbian and should seek out female companionship.
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 those that do realize that 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." He went on to state that "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."
Onset of the disease varies considerably. Some women can remember having "tingling" feelings as early as age 3. Others said the disease emerged during pregnancy, while others state that it happened as the entered menopause. No matter when it began, it doesn't stop, and so far no treatment has shown a high level of success.
Brain scans have turned up nothing. Women have reportedly resorted to painful surgery to have the nerves in their genital areas cut, to no avail. A few have found some relief with antidepressant medication, but that number is small. One woman fills a condom with ice and keeps it inserted on a daily basis just to make it through her day. Another indicates that her husband often times has to sleep in another room to avoid her thrashing about in their bed, trying to find some relief from the constant tingling in her genitalia.
Several report that things become so bad that suicide seems the only way out. These women are not nymphomaniacs. They instead get to a point where they try to avoid anything whatsoever that may result in further stimulating them. A few have gone so far as to have electroshock therapy in an effort to reset their brainwaves. Of those that opted for the procedure, only one has shown a decrease in the sensations.
All of the women interviewed stated emphatically that they wouldn't wish this on their worst enemy. It is not a pleasant experience, and all those that suffer are anxious for someone, somewhere to find a cure.
Until then, they all say they are glad that the illness has come out in the open. Most felt that they were suffering alone, and were to frightened, ashamed and embarrassed to tell anyone what they were going through.
There were over 120 comments posted to the 20/20 story, most of which were heartbreaking accounts from women thanking the network for airing the program. Many indicated that they, too had been suffering from this condition for years and years and were so grateful to realize that they weren't alone.
For more information on PSAS you can visit the website here. It is essentially a support group for women experiencing the symptoms of this disease, a place they can share what has worked, and not worked, for each of them. Another website that posts personal stories can be found here. (click the little red X to read in English)