PGAD = Persistent Genital Arousal Disorder
CHARLOTTE, N.C. "This is something that most people think, 'yeah, that's a good thing to have!' But unfortunately for these women, it can ruin their life," says Mintview OB/GYN and sexual medicine expert Dr. Alyse Kelly-Jones.
That is exactly what happened to Gretchen Molannen. The 39-year-old had a debilitating case of Persistent Genital Arousal Disorder. In an interview with the Tampa Bay Times, she describes her worst day. She says, "I had 50 orgasms in a row. In a row. Nonstop. I thought I was gonna die." After living with PGAD for 16 years, Molannen killed herself last month.
"In some patients, there's really nothing that helps," explains Kelly-Jones. She has been in practice for 13 years. She has treated one person with PGAD, a disorder that overwhelmingly affects women. Kelly-Jones' patient was in her 60s. She says, "I can be honest and say I didn't help her very much."
PGAD is new, first officially recognized in 2001. The treatment is difficult because the cause is still unknown. Some women may have abnormal blood flow to the pelvis. Others may have a certain type of cyst on their spine. Some may have had genital trauma. For others, there is no reason.
A woman with PGAD gets no relief from orgasm and anything can bring it on. Kelly-Jones says, "Like driving a car, riding a bicycle, anything that touches that area can trigger it."
"No one really knows how many people are affected by it," says Dr. Eric Feinberg of Carolina Cosmetic Gynecology. He says the best comparison is sneezing. "If you couldn't stop sneezing, you couldn't get your work done. You couldn't drive. You couldn't do normal activities," Feinberg says.
Feinberg says people who have PGAD often also have Restless Leg Syndrome and overactive bladder, all of which points to an issue with the central nervous system. He says sometimes drugs help. "Drugs that treat seizures seem to help treat this disability," he explains.
Doctors won't learn more about the disorder until they get more experience with it. Due to the personal and embarrassing nature of PGAD, patients are hesitant to step forward. Kelly-Jones says, "Women's issues can be taboo already. This kind of thing is gonna be really taboo."
There are several online support groups for people with PGAD. The International Society for the Study of Women's Sexual Health can also provide more info. Go to http://www.isswsh.org/