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Story Of A Sexual Syndrome: New Clues, Possible Fix For Some With Relentless Arousal

Jeannie Allen first spoke about her condition a dozen years ago, and now her online support forum on Persistent Genital Arousal Disorder has hundreds of members. (Courtesy)

Jeannie Allen first spoke publicly about her condition a dozen years ago, and now her online support forum on Persistent Genital Arousal Disorder has hundreds of members. (Courtesy)

When last I spoke with Jeannie Allen a dozen years ago, her relentless pelvic torment had just been newly labeled as a rare but bona-fide condition affecting mainly older women: Persistent Sexual Arousal Syndrome.

Please, no quips about middle-aged women feeling like typical teenage boys. It’s no joke. More of a nightmare: genital congestion and pulsation, unwanted and wholly apart from sexual interest, that never subsides, no matter how many orgasms. It’s not nymphomania or sex addiction because it’s not about desire. It’s better compared to priapism in men: unwanted, often painful, prolonged erections.

One snickering doctor told Allen she was every man’s dream. “I wanted to punch him,” she recalled in 2003. “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.”

When she went public back then — “Sexual Syndrome That Takes Joy Out Of Life” — Allen was a lone voice, one of just a handful of women known to have the syndrome, and the only one willing to be public about it (under her pen name, Jean Lund).

She’s not so alone these days. The syndrome, no longer seeming so rare, has been featured on “20/20” and “The Doctors.” Estimates of total prevalence range into the thousands. There are hundreds of women — and a few men — on her online support forum for what is now called PGAD — Persistent Genital Arousal Disorder.

And the existence of that network has helped spur research into the disorder. Most recently, a paper in a leading gynecology journal this week reports that in some cases, spinal cysts may cause the syndrome, and so spinal surgery may help.

“It’s not imaginary.”

– Dr. Barry Komisaruk

There’s likely no simple solution for the disorder, Allen said this week. “It’s not the same for everyone, and I really do not believe it’s one thing that’s causing it,” she said. “I think it’s a cocktail of things and different for every person.”

But research is beginning to cast light on possible biological causes — and possible treatments. It’s also offering new backing for patients who reject the “It’s all in your head” diagnosis.

The moral here may be, “Doctors should believe what their patients tell them. First of all, and before assuming that it’s a psychological problem, make sure that any physical problem is ruled out,” said Dr. Barry Komisaruk, distinguished professor of psychology at Rutgers.

He has scanned the brains of patients with the syndrome and found activation patterns that mean “it’s not imaginary.”

Almost every woman with the syndrome he’s met has been prescribed antidepressants, Komisaruk added.

“Well, if you had a thorn in your toe for 10 years causing you continuous pain, you’d be depressed and frustrated, and an antidepressant would not exactly be the treatment of choice,” he said.

This week’s research also suggests that doctors should consider checking for cysts that could be causing the disorder in some patients, Dr. Frank Feigenbaum, the paper’s lead author, said.

“The take-home is that a gynecologic practitioner should think about getting an MRI in the lumbar spine in the patient who presents with Persistent Genital Arousal Disorder,” Feigenbaum said, “particularly in the setting of other symptoms of compression of the sacral nerve roots.”

Brain Scans and Obscure Cysts

Sacral nerve roots? Yes, the research suggests that the disorder can arise from problems with the sensory nerves that run from the genitals up to the brain. The sacrum, a bone at the base of the spine just above the tailbone, could be key here. Continue reading

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