Last August, after eight months away from her family, Nora headed home to Calgary from Halifax on what ended up being one of the most torturous flights of her life. Dressed in grey sweats and a tie-dye hoodie, Nora clenched her pelvis and concentrated on breathing as her body worked its way through orgasm after orgasm—about one every five minutes—for the duration of the six-hour trip. She would get up to use the bathroom in half-hour intervals when she could no longer hold back a more intense climax.
“It was rather painful, trying not to have big ones, trying not to move or alert the people sitting next to me,” said Nora, 20, a Dalhousie University student who does not want her real name used due to privacy concerns.
When she got back to her family home, where her dad, stepmother, two stepsisters, and two sisters live, she had to spend the first week mostly alone in her bedroom as her orgasms persisted.
“It was difficult too because we hadn’t seen each other for so long and we wanted to spend time together, but I wasn’t comfortable doing so,” she said.
While Nora was orgasming frequently, mentally she was not aroused. She has a little-known medical condition called persistent genital arousal disorder (PGAD), which can cause a range of symptoms including spontaneous orgasms, tingling and throbbing of the genitals, including breasts, and a feeling like they are in a constant state of arousal, lubrication, and even lactating. Crucially, these symptoms often don’t coincide with sexual desire. There are no known causes or cures.
Caroline Pukall, a clinical psychologist who researches sexual health and dysfunction at Queen’s University, said while few people, including within the medical profession, know about PGAD, it affects about 1 percent of the population. Pukall said it’s a difficult condition to determine (it’s often confused with hypersexuality), and a diagnosis is usually made only when other conditions are ruled out. Symptoms can be present all the time or may come and go in flare-ups, she said, triggered by things like vibrations from a car ride or sexual imagery. She said of the people who report having PGAD, one-third experience spontaneous orgasms and half describe their symptoms as painful.
“I don't even like calling them orgasms,” Pukall said. “It’s almost like a spasm. It isn’t pleasurable; it’s distracting, it’s distressing.”
She said because the orgasms can happen at any moment, “you may be interpreted as some kind of sexual predator or a pervert.”
Pukall said the condition can be debilitating—and often doctors seeing patients aren’t asking the right questions, which can be additionally frustrating for people experiencing PGAD.
“They may tell you you're lucky,” Pukall said.
In reality, people experiencing PGAD have higher rates of depression and anxiety as well as suicidal ideation, she said, because they feel hopeless in the absence of effective treatments.
Having PGAD has changed Nora’s life dramatically. Sometimes, she goes weeks or a month without a flare-up. But when she’s in the middle of one, she can orgasm up to every two minutes, which works out to hundreds of orgasms a day. She has also lactated, despite never having been pregnant.
“When it’s like that, I can’t cook for myself, I can’t do any work, I can’t really hold a conversation with anyone. It’s very isolating,” she said. Masturbating doesn’t provide long-lasting relief, and can make the problem worse.
Last semester, she dropped half her course load because she couldn’t stay on top of her homework. She said her dad felt it was a “form of laziness rather than fully understanding what it’s like to live with this.”
She’s also decided it’s not realistic for her to become a chartered accountant, because she doesn’t think she could earn a professional designation with her condition. So she’s thinking about different career options.
Nora’s time dealing with the medical system has also been frustrating. She said she’s taken multiple blood tests in the past year and seen six doctors, two of whom didn’t believe her about her symptoms. She was disappointed that a recent MRI came back normal—she and her doctor were hoping it would show some type of growth either at the bottom of her brain or spine, to which they could attribute the symptoms.
“I was hoping they could just cut it out and I could go on with my life,” she said.
Her former therapist also told her he didn’t want to work with her anymore, because discussing PGAD made him uncomfortable.
“It kind of added another element of ‘This is something you should be ashamed of and not talk about,’” Nora said. “Having him shut that down made it feel more sexual and dirty.”
Dr. Anne Louise Oaklander’s advice to people experiencing PGAD symptoms is straightforward: see a neurologist.
Oaklander, a neurologist at Massachusetts General Hospital, authored a study looking at the experiences of 10 women with PGAD. The study, published in January 2020, found the condition can be caused by misfiring nerves carrying sensations from the genitalia or by spinal cord damage.
“Neither the patients nor the doctors are thinking about neurology. I’m really hoping to raise awareness of that,” Oaklander told VICE World News. She said patients should print out her study and take it to their doctor’s appointments.
“Doctors cannot argue with a stone-cold paper in a top medical journal.”
Out of the 10 women in the study, who ranged in age from 11 to 70, nerve damage affecting the ends or tops of the nerves was the most common cause, Oaklander said. One woman had it from discontinuing a drug—something Pukall also noted as a potential catalyst for symptoms, specifically when people stop using SSRIs.
Oaklander said once a neurologist is able to determine a cause, doctors can start trying to solve the problem, potentially with drugs or other medical interventions. But even when there’s no obvious treatment, she said just hearing a doctor lay out the cause of the problem “is so helpful to people that they cry with relief.”
Daniella, 29, who lives in Indiana and does not want her last name used due to privacy concerns, recently started treatment for her PGAD symptoms.
The mother of two doesn’t spontaneously orgasm, but her genitals do go through sustained periods of arousal from which she can’t find relief, even after masturbating.
“Imagine having to sneeze all day long and you couldn’t just sneeze,” she said. “It makes me feel primal and frantic.”
Daniella has both depression and anxiety, but believes using SSRIs have exacerbated her PGAD symptoms. She said the symptoms have been kicking around since high school, but growing up in an Anabaptist Christian church, she was taught “the only good woman is a pure virginal loving happy woman who takes care of her family.” As a result, she felt a lot of shame around her sexuality.
But “turning it around in my mind as a medical condition has really improved my life a lot,” she said.
In the past few months, she’s visited several specialists, including one in Michigan who is providing her with six shots containing the numbing agent lidocaine and steroids. She is also undergoing therapy to help ease the tension in her pelvic floor. She said she’s already noticing improvements in the pelvic floor therapy, including less pain during sessions.
But she still doesn’t know the root cause of her PGAD and says she can’t say if the shots have eased her symptoms.
All told, Daniella has spent close to $5,000 in the past couple of months trying to treat her PGAD.
Both Daniella and Nora have found solace in Facebook groups for PGAD sufferers, where people discuss their symptoms and treatment options and send around the names of knowledgeable doctors.
Nora said she’s built up a good support system among her friends and her mental health is improving.
“I’ve moved past the anger… of knowing this will be something I'll have for the rest of my life and more just dealing with how to cope with it,” she said, noting that meditation helps her stay calm.
Daniella has started communicating more about the issue with her husband; she believes it’s key to have support from a partner for people in a relationship.
“We’re making progress. He gave me oral for the first time a couple weeks ago,” she said, noting they both are experimenting with sex having grown up in restrictive cultures.
Recently, she told her husband he needs to ask more questions about how she’s coping.
“I told him everything that’s been on my mind and stuff that I hadn't said to him. That was so good for us, for me to be able to trust him to hear that and not judge it.”
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