Suze has begun conversations with doctors this way: "I want to talk to you about something, but you have to give me your word you will not laugh or give a flippant response because it is a serious situation."
In short, Suze has too much of a good thing. For days, sometimes weeks at a time, she feels constantly aroused, but can't get any satisfaction.
Despite the preamble, though, "one doctor looked at me and said, 'What a lucky man your husband is! I wish my wife had this,'" says Suze, 63, a retired nurse in Florida. Others have asked, "So, is this like being a nymphomaniac?"
Hardly. Suze, who asked that her last name not be published, has what is now called persistent genital arousal disorder, or PGAD. It was first named by sex therapist Sandra Leiblum in 2001 as persistent sexual arousal syndrome, but as Leiblum and others have begun studying patients, she decided that it was more a disorder than a syndrome, a syndrome being a constellation of symptoms that suggest the presence of true disease.
In a recent article in the Journal of Sexual Medicine, Leiblum and her co-authors identified a series of medical and psychological traits, including depression and panic attacks, that can accompany PGAD. Though some women are helped by psychiatric drugs, Leiblum strenuously resists the idea that the problem is necessarily psychological. “I do think there is always some organic contribution, but we just do not know what it is.”
Exactly what it is remains murky, but Suze’s symptoms, like that of other sufferers, involves a feeling of "fullness" — a constant engorgement — of the genitals that is unprompted by erotic thoughts or feelings.
"I could be in the middle of a tennis game [or] playing canasta," Suze says, "and then suddenly have this intense urge for intimacy. I could masturbate five times or 105 times and it would only make it worse."
Leiblum, who is now in private practice in Bridgewater, N.J., and treats a wide variety of sexual and relationship complaints, says her description of the disorder did not occur until 2001 because, like most sex therapists (and sex columnists), she heard many more complaints about lack of desire and arousal than she ever heard about too much of it.
Some women with PGAD tried approaching doctors, Leiblum says, but “I took it seriously and listened to what women were telling me. I said to myself, ‘This is bizarre and different from anything else I have heard of,’ but I believed what women told me rather than writing them off.”
Nobody knows how many women might suffer from PGAD. And the feeling of genital arousal is not always unwelcome. Some women like it. But if it is not causing distress, it is not considered a disorder, and so such women cannot be said to truly have PGAD. The ones who do describe a living hell.
Heather Dearmon, a 33-year-old housewife and mother in South Carolina, became so desperate she voluntarily had herself committed — twice — to psychiatric institutions. “One psychiatrist said I must be sexually repressed and needed to experiment more," she says. "He suggested I try lesbianism.”
Her symptoms began during her pregnancy with her son. She asked her ob-gyn, who suggested that the pregnancy may have played havoc with Dearmon’s hormones and advised waiting it out, hoping the urges would subside after the birth. “But the day after I gave birth they came back,” she recalls.
The feelings were so intense and so persistent that she was unable to ignore them or even carry out daily functions. “It got to the point where morning, afternoon and night I had to take care of it. But the more you masturbate, the more you desensitize yourself so it would take a good hour to have three orgasms. This is at the point when I started to become suicidal. My whole life was being robbed from me.” She began pushing her husband away because she treasured any time she was not feeling aroused.
Finally, with her fears mounting over plans for a long family car trip, a doctor prescribed the anti-anxiety medication Paxil. Soon after beginning dosing herself, she found the urges became less frequent. Now, she can go up to 10 days without having to masturbate, though by day seven the arousal, focused on her clitoris, is often severe.
Why this happens remains a mystery. Research is still at an early stage, but some tantalizing hints have begun to emerge. One of Leiblum’s collaborators in England has found that some women complaining of PGAD can have concomitant conditions like a yeast infection or a dermatological outbreak around the genitals. But Leiblum stresses that the only thing for sure is that both can happen at the same time, not that one causes the other.
Sometimes biofeedback techniques can help, suggests sex researcher Beverly Whipple. “A couple of women were very successful,” she says.
Sex and the brain
Whipple, Leiblum and Rutgers University psychology professor Barry Komisaruk (Whipple’s co-author of their 2006 book, "The Science of Orgasm") are currently using MRIs to examine the brains of women suffering from PGAD in hopes of discovering how the central nervous system might play a role.
The PGAD mystery is just one of several linking the brain with too much arousal. One woman had spontaneous orgasms while brushing her teeth though she did not have orgasms while having intercourse or masturbating. The tooth brushing apparently triggered epileptic seizures that, in turn, caused the orgasms. (People with epilepsy sometimes do experience what is called “orgasmic aura.” In some cases, patients have been known to refuse treatment because they like the sensations.) Another woman had orgasms due to a vascular abnormality in her brain.
Men with obsessive-compulsive disorder have been known to have unwanted and unexpected erections. Parkinson’s patients can become hypersexual. So can people with brain injuries.
Men with a condition called priapism also can have too much of a good thing. Those constant reminders at the end of commercials for impotence drugs tell men that if they have an erection lasting four hours or longer they should seek medical advice. What they don’t say is that you might have priapism, an erection that simply won’t go away. Unlike PGAD, priapism does not usually result in a man craving release, it’s just very painful, a hydraulic malfunction that can be treated by — have a seat men — sticking a needle into the penis to draw blood out.
But even that gruesome scenario is nothing compared to what some of the women suffering from PGAD say they have experienced.
As Dearmon says, we should all be careful what we wish for when we are wishing for more feelings of desire. “Anything unrelenting is torture.”