Mandy Funk, 37, remembers when her body began to betray her.
As a university junior, he began to have episodes in which his body would act as if he were excited without any reason. Sometimes, he says, it was felt that a spicy sauce had been covered over its genital area. He had to give up tight clothes and driving on horseback, his love of a lifetime. Often, the pain was so intense that he could not sit.
Funk fought for years to find a doctor who understood his symptoms.
He finally learned that he had developed a condition called persistent genital excitation disorder (PGAD), which led to treatment. Funk, who, with her husband, has an electric hiring company in Goessel, Kansas, finally headed her life, at least partly. He is especially happy to be able to ride his children again, although sometimes he still experiences outbreaks.
Funk is lucky to have received a diagnosis and help, experts say. Many doctors do not know the disorder, although there are some growing investigations.
The condition began to come to light only in 2001, when the researchers of the Faculty of Medicine Robert Wood Johnson in Piscataway, New Jersey, described the experiences of five women with episodes of excitation symptoms that seemed to arise from nothing. In the report, published in the Journal of Sex and Marital Therapy, the authors, Sandra Leiblum and Sharon Nathan, identified the key characteristic of the disorder as “persistent physiological excitement in the absence of feelings aware of sexual desire.”
Initially, the condition was called “persistent sexual excitement syndrome”, but then “sexual” was replaced by “genital” because it really had nothing to do with sex, said Dr. Irwin Goldstein, urologist and director of Sexual Medicine of San Diego.
Not long after the 2001 report, Leiblum, then a professor of psychiatry at the Faculty of Medicine of Robert Wood Johnson, concluded that psychology alone would not explain all the symptoms that the five women were experiencing. Leiblum began sending patients to Goldstein, who at that time was a specialist in sexual dysfunction at Boston University.
It is estimated that from 1% to 4% of women can have symptoms of the disorder, although the incidence could be significantly greater, said Caroline Pukall, a professor of psychology at the University of Queens in Canada. Many women do not feel comfortable arguing a topic they see as private, even with their doctors, he said. Another problem could be the difficulty of people, imagining excitement could be something bad.
“Maybe all the assumptions are about how excitement is supposed to feel,” Pukall said. “Most experience the body and mind working together in a really pleasant way. Therefore, they do not have a frame to understand this.”
Pukall said that can help explain why so few in the medical community are aware of PGAD, and added: “Certainly, most primary care providers have not heard of it at all.”
To raise awareness, Goldstein and other experts, including doctors who focus on sexual dysfunction, psychologists and physiotherapists, formed a panel to share what they had learned about PGAD.
In 2021, the panel published a report in the Journal of Sexual Medicine, which offers a road map to determine possible causes and treatments for the “extremely distressing sexual health condition”, which “can be more frequent than what was previously recognized,” wrote the authors.
They pointed out that the symptoms could appear first in the vaginal region, the pelvic area or the spinal cord.
According to Goldstein and his colleagues, the diagnosis of PGAD, at least, would require a woman to have:
- Persistent or recurring, unwanted or intrusive sensations, distressing genital excitement.
- Symptoms that had lasted three or more months.
- Sensations that could not be associated with any sexual interest, thought or fantasies.
- Buzz, tingling, ardor, contraction, itching or pain, along with a sense of excitement. While the sensations would feel more commonly in the clitoris, they could also feel in the vulva, the vagina, the urethra, the bladder and other places in the vicinity of the pelvis.
The 2021 Report included findings of a small functional magnetic resonance study that analyzed three women’s brain scanns with PGAD and 12 healthy volunteers. Healthy volunteers were asked to think of sex while they were on the machine, and those with PGAD were scanned when they felt symptoms of the condition.
The area of the brain that lit up when healthy volunteers thought about sex, the palacentral lobe, also shone much more when women with pgad were symptomatic.
PGAD is mainly a problem of a sensation that is too unwanted and implacable that goes to the brain, Goldstein said. While the paracentral lobe has other functions, in the context of PGAD, it is a key sensory region of the brain involved in the processing of the information of the urogenital areas, such as the clitoris, the vulva and the perineum; pelvic organs, including bladder, urethra, vagina, cervix and rectum; And the lower extremities, especially the fingers of the feet, he said.
More recently, a small study was published by German researchers who use brain scanning in scientific reports in February, with 26 patients diagnosed with PGAD and 26 healthy volunteers. The areas of the brain associated with the disorder were activated as expected, but the researchers said it was not clear if the specific symptoms were connected with the different pattern of brain activity. The findings gave possible focus areas for future investigations, they wrote.
Ultimately, the previous scan study may have been more revealing.
“We know that irritated sensory nerves and nerve roots are associated with pgad and excessive brain activity in the paracentral lobe,” Goldstein said.
But that is not enough yet, he said.
“Nervous irritation or irritation of the nerve root can be caused by a variety of factors, including injuries, compression, infections and inflammation,” he said, adding that if the message of the irritated nerves reaches the paracentral lobe, a woman could experience the unwanted genital excitement.
If doctors could better identify the exact route that led to unwanted excitement, more women could be helped, Goldstein said.
“That is our work as sexual detectives,” he said. “The good news is that now we can really help improve the quality of life in approximately two thirds of women.”
In general, specialists will treat the underlying problem that triggered the disorder to see if the excitations are resolved.
What causes disorder?
Pgad can be the result of many conditions that irritate the nerves, from back injuries to changes in the dosage of certain antidepressants.
Dr. Sharon Parish, a professor of Clinical Medicine at Weill Cornell Medical College, points out the first case he saw: that of a woman who had stumbled at work and wounded her hip a year earlier. When the patient was referred to the parish for her ob-nobyn, she was struggling to find a position that would not cause pain.
For Shari Stewart, 63, from Colorado Springs, Colorado, the background came when he went to a doctor for help with the pain he was experiencing. He had sought his online symptoms for years and finally determined that he should have PGAD.
“I told him that I think I have PGAD,” Stewart recalled. “I have all these symptoms, and before being able to show him the list, he said: ‘God, I would like my wife to have that.’ And then he laughed between teeth.
Stewart does not believe that the doctor will take it seriously.
Even after the 2021 consensus report, a very small percentage of doctors knows the disorder, especially in primary care or internal medicine, Goldstein said. “Calculate that only about 5% to 10% of all suppliers know PGAD.”
Parish recommends that women who suspect who have developed PGAD seek to the International Society for the Website of the Study of Sexual Health of Women for a list of suppliers who are familiar with the condition and can offer treatments.
Knowing what went wrong is what helped April Patterson, 45, to recover his life.
Patterson, a physiotherapist from Los Angeles, began to have pain during sexual relations when he was 21 years old. “It was like sciatic pain,” she says. “I would simply shoot my leg, just during sexual intercourse.”
Then the pain began to emerge more often and in more places. “Everything seemed to be anthilling, burning, buzzing,” he said.
After years of pain, one day, Patterson saw a steering wheel announced a presentation on pelvic pain related to nervous problems. “I thought, this is what I have,” he said. “I need to go to this meeting.”
It was then that Patterson first listened to Goldstein to speak.
After several radiographs and a brain exploration, Patterson’s symptoms and pain date back to herniated discs in their lower column. After they treated her with a nervous block, her pelvic symptoms relieved.
A column surgeon repaired the damaged albums and expanded the opening in the spinal channel where it was too narrow. The procedure completely set the Patterson PGAD and most of its pain.
The experience caused Patterson to be more aware of how much women remain. In the questionnaires, he now asks his patients about unwanted persistent excitement, as well as pelvic pain and other related symptoms.
“And then we can enter the conversation,” he said.
