The words “arousal” and “orgasm” are almost universally associated with sexual pleasure—a biological itch that goes away (or at least temporarily subsides) when scratched. But what if scratching only exacerbated that itch, so much that it became an intractable ache often compounded by burning, throbbing, and swelling?
These symptoms were truly unbearable for Gretchen Molannen, a 39-year-old Florida woman who committed suicide earlier this month. Roughly 16 years ago, Molannen developed a rare and little-known condition called persistent genital arousal disorder (PGAD). Like many women who suffer from the debilitating disorder, Molannen was forced to quit her job and had difficulty maintaining relationships with family and friends, let alone boyfriends. She underwent diagnostic procedures and sought treatment for her symptoms from a variety of doctors, none of whom could provide her with any answers or long-term relief. Molannen divulged every detail of her battle with PGAD to The Tampa Bay Times—from her masturbation habits to previous suicide attempts—for an exposé that was printed the day before she put an end to her suffering.
There may have been other triggers that led to Molannen’s suicide, but doctors who specialize in PGAD and other pelvic pain disorders say severe depression is not uncommon among their patients. Dr. Robert Echenberg, a gynecologist and founder of Pennsylvania’s Institute for Women in Pain, said he’s seen at least seven suicide attempts among his 125 patients in the last year, one as recently as last week. Just five months ago, a Dutch woman with PGAD took her own life.
“Depression and pain and hopelessness are a bad combination,” Echenberg told The Daily Beast. Even with Molannen’s suicide spotlighting the condition in the media, PGAD remains largely ignored or misunderstood in the medical world. “So many patients feel hopeless because they have been treated over and over again without success, and have frequently been told the pain is ‘in their heads,’” he said. “Others tell me they’d rather have cancer just so doctors would listen to their plight and they could develop a plan for health care.”
Still widely misconceived as a “sexual disorder,” PGAD is one of many conditions that falls under the umbrella of vulvodynia, or chronic pelvic pain—an issue that affects 20 percent of reproductive-age women, according to Dr. Echenberg. PGAD was introduced to the medical world in a 2001 study by the late Sandra Leiblum, a pioneer in modern sex therapy.
A small group of researchers scattered around the world have since connected the phenomenon to the pudendal nerve, the sensory neuron that triggers arousal. Dr. Michael Hibner, a gynecological surgeon in Arizona, says PGAD develops when the pudendal nerve is compressed or irritated, causing the clitoral dorsal nerve to fire off at random. As a result, women afflicted with the disorder feel constantly on the brink of the big O.
The concept of multiple, occasionally spontaneous orgasms titillates many women and men, even those in the medical profession. Kim Ramsey, 44, was working as a nurse in an emergency room when she first learned she had PGAD. “My colleagues would be like, ‘Wow, you’re so lucky,’” she said. “But I genuinely thought I was having some sort of nervous breakdown. I felt flushed. My vagina and breasts were engorged. I kept thinking, ‘How do I keep a grip on reality and function in a patient-nurse setting without people knowing?’”
Uninformed doctors have left other patients at their wit’s end, some of whom feel they have no choice but to take matters into their own hands.
“Some women have pierced their own genitalia to drain the blood that pools in their genital region,” said Anna Reid, 26, who lives in Australia and was diagnosed with PGAD last March. She has since worked with Dr. Hibner and found comfort in online support groups, which were originally launched by Jeannie Allen, 51, in 2006. Allen’s PGAD Support was the first such network to be established and remains the most well-known worldwide, with roughly 400 active members.
But that number reflects only a small portion of women around the world with PGAD, which doctors like Hibner estimate to be in the thousands. Other authorities on chronic pelvic pain say causes and treatments are too complex for most gynecologists to comprehend.
“The only nerve that is ever talked about is the pudendal nerve, but that’s not the only one that innervates the pelvis and the urogenital region,” said Christine Veasley, executive director of the National Vulvodynia Association, the only organization advocating for pelvic pain awareness on The Hill and with the National Institutes of Health (NIH). “How can gynecologists conduct nerve blocks and other types of neurological intervention when most of them aren’t trained to do nerve examinations and don’t understand the whole nerve supply of the urogenital region in women?”
Part of the reason clinical care hasn’t advanced in this area is because none of the research has been government-funded, according to Veasley. And she’s not optimistic that the government will step in anytime soon, even after vulvodynia was officially recognized as a form of chronic pain by the National Institutes of Health in November.
“We’ve come a long way, but we still don’t have the science to differentiate PGAD from other conditions,” she said. “Most importantly, how do we know what treatments work? The treatments that exist certainly don’t work for all patients.”
Elyse, 63, says she’s tried every known treatment since she was diagnosed with vulvodynia seven years ago at Kaiser Permanente Hospitals in California. She’s had botox and steroid injections in her clitoral region; pudendal nerve blocks and spinal cord stimulation (the latter has left her with a numb left foot); a kind of pacemaker implanted in her lower spine to stop her pelvic muscles from spasming. She’s seen chiropractors, acupuncturists, and hypnotists. At her doctor’s suggestion, she underwent a vestibulectomy, a surgery that involves removing painful tissue in the vulva.
But the pain persists, and her condition has recently been complicated by PGAD symptoms.
“I just put in a call to my doctor and said I felt like my insides were falling out,” she said through tears. “It’s very depressing. I’ve wanted to commit suicide myself.”
While it seems that women like Elyse aren’t in the minority, Dr. Hibner insists many of his patients have reported significant, albeit often temporary improvements after getting botox injections, venal surgeries, nerve blocks, and other treatments he offers.
“If a patient has reached the point where they’re ready to kill themselves, they tell me they’d give anything for just a few weeks of relief. Sometimes just validating that they have a real disease helps in some way.”