Sexual syndrome that takes joy out of life
By Carey Goldberg, Globe Staff, 11/11/2003
When Jean Lund, a 51-year-old office manager and mother of three, told her gynecologist the problem, he snickered and said, "You're every man's dream."
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"I wanted to punch him," she recalled. "I'm suffering here, and he's laughing, `Hardy-har-har.' So I looked him in the face and said, `How would you like to walk around on the verge of orgasm every second?' And he shut up."
Lund has a rare condition that prominent sexual medicine researchers have just "discovered" and begun to document. They have given it a name -- Persistent Sexual Arousal Syndrome -- and are trying to develop treatments for it, so far with patchy success.
The syndrome is the opposite of the usual female sexual complaint -- difficulty getting aroused. Instead, patients sustain unrelenting physical arousal, no matter how many orgasms they have. They are not nymphomaniacs; they do not experience desire. Rather, they feel the vaginal congestion and pulsation of arousal, and it is not about pleasure -- far from it.
"It's just a horror," said Lila, a 71-year-old woman who has had the syndrome since brain and bladder surgery in 1999, and said she often has 200 small orgasms a day. "It bothers me more than the breast cancer," an advanced case that was diagnosed two years ago.
"This never stops, it never lets up," she said, and it ruins everything, including car travel, dinner parties, and simply sitting on the couch. "It colors your whole life."
The syndrome appears to be quite uncommon. The sexuality specialist who published the first journal paper on it two years ago said that she has received thus far only 30 or 40 e-mails from patients around the country and world.
"I don't think it's very prevalent at all but I think it's real," said the specialist, Dr. Sandra Leiblum, director of the Center for Sexual and Relationship Health at the Robert Wood Johnson Medical School in New Jersey and author of "Getting the Sex You Want."
At Boston University's Institute of Sexual Medicine, about 2,500 women have been seen in the last five years, and only about 10 had the persistent arousal syndrome, said Dr. Irwin Goldstein, the institute's director.
It appears, he said, to stem from "a grab-bag of conditions." Certain medications can bring it on, like Trazodone, an antidepressant known to cause the male equivalent, priapism. Seizures also seem to be likely triggers, as do abnormal connections of arteries to veins.
Goldstein has tried various treatments, he said, from taking a patient off Trazodone to prescribing Depakote, a drug normally used to tamp down the manic episodes of bipolar disorder.
He also has tried local applications of ice and anesthetics such as Lidocaine, hoping the numbness would free the patient from the constant distraction of arousal for a little while. One woman whose arousal stemmed from an overactive blood supply to her clitoris -- a malformation she had been born with -- underwent multiple procedures to choke off the abnormal blood supply, he said.
In general, however, the arousal tends to be hard to conquer, and some of the specialists' attention has focused simply on helping the women cope, and letting them know they are not alone. Both Goldstein and Leiblum have formed support groups, and have websites on the syndrome. One of the worst aspects of the syndrome is "how invalidating it is," said Julie Johnson, a sex therapist who works with patients at Boston University. "Going to various doctors and having the symptoms misinterpreted and downplayed, or having it called psychological." Among gynecologists, she said, "If you call up 10 of them, at least half won't know what it is."
Sex -- alone or with a partner -- helps little, Johnson said. It becomes just "a drudgery," to try to get rid of the arousal for a spell: "There's no joy or fulfillment in it."
Some women have been so tormented by the arousal they have become suicidal. And, for many, there is also an element of mortification.
"For a woman even to acknowledge it to a physician is often so embarrassing," Leiblum said. "And for some Christian women, there's a sense of shame that if you're feeling this way, you must be bad, or having impure thoughts."
And those who do summon up the courage to talk about the syndrome must deal with the potentially hostile reactions of people who -- understandably -- have never heard of it.
"God forbid you ever tell anyone you have this problem," Goldstein said. "It gets misconstrued, you become `a public menace,' because you're `a pervert.' "
Jean Lund -- also a freelance writer, who only wants her pen name used in print -- -- said that it does help to know she is not alone. "For the first three years, I thought I was the only one on the face of this planet," she said. But what she really needs is a cure: "No one has been able to help me."
Lund said she believes the problem is some kind of imbalance in her brain, possibly triggered by the chronic pain of a compressed nerve in her neck several years ago and surgery to relieve it. The persistent arousal began a couple of months later.
A patient of Goldstein's who asked to be identified only as Alice is similarly convinced that the trouble in her groin is caused by her brain. A health professional in New York, she began taking a mood stabilizer called Lamictal two years ago, and it is as if it "permanently flipped a switch in my brain." For a while, she had the worst of both worlds -- constantly aroused, but unable to reach orgasm.
Depakote has helped a little, she said, and she can now have orgasms, but she is still feeling uncomfortably hyper-aroused.
"It's physical," not mental, she said of the persistent arousal. "Men can relate to that more than women. I feel like a 17-year-old boy -- my idea of what it's like to be a 17-year-old boy."
But at least 17-year-old boys know they will grow out of it. For women with persistent arousal, it is not clear whether it will ever end.
"If you gave me the choice of this or never having another orgasm as long as I live," Lila said, "I'll take never having another one as long as I live."
For more information on Persistent Sexual Arousal, see the following websites:
http://www.bumc.bu.edu/Departments/PageMain.asp?Page=8105&DepartmentID=371
http://psas-support.org/.
Carey Goldberg can be reached at goldberg@globe.com.
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