The only thing that might be worse than having a debilitating condition for which there is no accepted cure is having a doctor sleazily mock you for having it.
“High five!”
“Lucky you.”
“I wish my wife had that.”
Direct quotes all.
Such is the lot of those who live with “persistent genital arousal disorder” (PGAD), a severely disabling condition that manifests as engorged, inflamed, aggressively hyperactive genitals.
Think of it as tinnitus between your legs rather than inside your ears, and imagine genital sensation the way you would sound waves on your eardrum: Music and speech are nice when you want them. But incessant roaring in the ears is nothing but bothersome, and can become maddening and traumatizing.
Unfortunately for the people who live with PGAD—overwhelmingly female—complaints of the incessant sensation are almost invariably greeted with condescending chortling, rather than professional compassion. Part of the problem, of course, is where the feelings are located: Incessant tingling in the ears or the feet is taken seriously as a neurological problem. Incessant tingling in the genitals is smirked at.
As one woman, who wished to remain anonymous, put it, “The most frustrating thing? That this is a ‘sex’ disorder. Doctors imply psychiatric problems, sex offenses, and above all, that we are some sex fiends that enjoy constant sex. Nothing could be further from the truth. I can’t bear to be touched.”
The term “arousal” is also somewhat misleading, as the sensations are coupled with the complete absence of psychological desire. People afflicted with the disorder—which several studies have estimated at 1 percent of the human population—usually find the only way to relieve the symptoms is to masturbate constantly.
Patients who complain that they find themselves masturbating up to 100 times a day just to achieve a few hours of respite are seldom if ever taken seriously. The agony of living with PGAD can be so misery-inducing that people afflicted with the condition have been driven to suicide. Consider the case of Gretchen Molannen, a 39-year-old Floridian woman who killed herself in 2012 after speaking out publicly in the press about her affliction. We’ll never know if the agony of the condition or the public shaming and trolling she suffered led to her taking her own life, but she is most certainly not the only person who was driven to self-harm and suicide by PGAD.
“I know of six patients who have committed suicide—and that’s just the ones I know of personally,” says Irwin Goldstein, director of sexual medicine at the Aldorado Hospital in San Diego, who has been trying to help patients with what he calls “this nightmarish, miserable and suicidal condition” for 16 years. “There really is no disorder in sexual medicine that causes the bother and distress that this one does—it is the numero uno ‘I’d rather die’ sort of condition.”
If fully 1 percent of the world’s population lives with PGAD, that means at least 1.5 million Americans have the condition. Considering that 1 percent of the world’s population have schizophrenia—probably the world’s best known psychiatric disorder—it’s alarming, to say the least, to think of how few medical professionals have even heard of PGAD. The condition wasn’t described in the medical literature until 2001, with a research paper in The Journal of Sex & Marital Therapy.
Alan Gordon, director of the Wasser Pain Management Centre in Toronto, Canada, believes that the first time he saw the condition was 30 years ago in a woman who was “profoundly distressed.” He had never seen it before and wasn’t sure how to help her, though he believed what she told him about her symptoms. “I worry now about what happened to her—I think often she would have been driven to suicide.”
The responses from doctors can be profoundly humiliating, says Julia Jean Jackson-Fowler, who has dealt with the condition since 1961, when she was just five years old. (Note: While many of the women quoted in this story are in their fifties and sixties, PGAD affects people of all ages.)
“I’ve spoken to male doctors, female doctors, urologists, psychiatrists, surgeons, and they usually just want to change the subject—they don’t want to talk about it, they clearly feel very uncomfortable themselves.”
The shame and stigma can be so severe that patients very rarely come forward publicly: Before speaking to Jackson-Fowler, I was able to gather anonymous email Q&As with just 12 people (11 women and one man), who would only submit answers to me anonymously through a researcher, Caroline Pukall of Queen’s University in Canada.
Pukall’s research on the disorder—published last month—found that roughly half of patients with PGAD report their symptoms are outright painful. Spells can last for hours or even days at a time, waking women during the night with spasms and orgasms, destroying their ability to work or even leave the house.
Jackson-Fowler made the choice to come forward because, as a lifelong journalist, she knows how important it is to give a human face to something so stigmatized and so poorly understood. “But I know from experience when you talk about difficult subjects in public, people start coming out of the woodwork,” she says. “And until we have more people speak up, we won’t have the research and the recognition that we need to find cures.”
Linda Cataldo, 66, of San Diego, also made the choice to speak to me using her real name and identity—for the same reason, to get the word out and promote research through a non-profit she is setting up. When I remark that using her real name is brave, she remarks: “Not as brave as living with PGAD.”
As cases go, Cataldo’s is one of the most severe described to me by 14 people with the condition: She has had laser surgery, a vestibulectomy (surgical removal of part of the vestibule, or vaginal opening), three surgeries following the vestibulectomy to counter resultant complications. She has also had two “Interstim battery-powered devices implanted in her pudendal nerve to control the neural firing, and in July will be undergoing spinal surgery with Goldstein to correct for a missing disc in between her fourth and fifth lumbar vertebrae, an operation that will cost $60,000. This comes on top of the roughly $100,000 she and her husband have spent on treatments and trips to specialist centers across the country (her HMO won’t cover treatments more than 30 miles from their main office). And like most with PGAD, she’s taken a range of strong painkillers and other drugs such as Ambien to cope with the pain.
Despite everything she’s been through, she says she is more hopeful than ever before that this newest surgery will resolve her condition once and for all. Goldstein says that he has now been able to provide “actual cures” to half a dozen women now, largely through operations on their spines, such as realigning disc impingements or removal of a type of cyst known as a Tarlov cyst. Scientists have only known about how cysts could lead to PGAD for five years: In 2012—”the breakthrough moment,” as Goldstein puts it—researchers in New Jersey identified these fluid-filled sacs that form around the base of the spine as being present in about 67 percent of women with PGAD.
These cysts don’t account for all cases of PGAD—women have been known to develop the condition after everything from childbirth to starting or ceasing SSRI medication, and researchers have just begun to scratch the surface. At Queen’s University in Canada, Pukall says they are now looking for specific genes that could predispose people to develop the condition, and epigenetic factors that can switch those genes on or off. Plus they will be looking at how hormones and neurotransmitters like oxytocin and serotonin can influence the system.
At Concordia University in Montreal, James Pfaus is examining how the neurotransmitter dopamine—a central actor in neurological problems like addiction—plays a role. “People with Tourette’s, for example—which is a disinhibition of dopamine all over the brain—see higher incidences of PGAD,” he says. And while injuries like a traumatic childbirth can lead to PGAD, head injuries and concussions have also been known to trigger the condition.
Pfaus first became familiar with women with PGAD in the 1990s—years before the first formal paper describing the condition was published. “Its been around a long time and it should have been described long before 2001. But this is typical of our culture, we don’t listen to women, we don’t listen to what women say, we mansplain over them, and we try to tell them what they have when we have no idea,” he says.
For a condition with a global prevalence of 1 percent, he says it’s ridiculous that PGAD is still not included in the Diagnostics and Statistics Manual (DSM-5), the “bible” of psychiatry that determines what is and is not taken seriously by medical professionals. It seems likely, however, that PGAD will be included in the next version of the ICD—the global version of the DSM—which could get even more researchers looking for causes and cures.
“We have so far identified five spinal pathologies that cause PGAD, from spinal stenosis to disc impingement to three different kinds of cysts. Imagine—is that all that was wrong with so many poor women who suffered for decades or more? At least now for a new generation of women, we are getting right on to this,” Goldstein says. “And frankly, it’s an exciting time. I’ve never been more optimistic.”