Mandy Funk, 37, remembers when her body started betraying it.
As an academic junior, she began to have episodes in which her body would act as if he were excited without reason. Sometimes she said, it seemed that the spicy sauce had been covered with its genital zone. She had to abandon tight clothes and horse riding, her love for life. Often the pain was so intense that it could not sit.
Funk has struggled for years to find a doctor who included his symptoms.
She finally learned that she had developed a condition called persistent genital excitement disorder (PGAD), which led to treatment. Funk, who, with her husband, has an electric contract company in Goesel, Kansas, finally obtained his life, at least in part, on the right track. She is particularly happy that she can ride a horse with her children again, even if she sometimes still experiences thrusts.
Funk is fortunate to have received a diagnosis and help, say the experts. Many doctors ignore the disorder, although there are growing research.
The condition not started to reveal itself in 2001, when researchers from the Robert Wood Johnson Medical School in Piscataway, in New Jersey, described the experiences of five women with symptoms of excitation that seemed to result 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 “a persistent physiological excitement in the absence of conscious feelings of sexual desire”.
The condition was initially called “persistent sexual excitation syndrome”, but “sexual” was replaced by “genital” because it really had nothing to do with sex, said Dr. Irwin Goldstein, urologist and director of sex medicine in San Diego.
Shortly after the 2001 report, Leiblum, then a professor of psychiatry at the Robert Wood Johnson Medical School, concluded that psychology alone would not explain all the symptoms that the five women experienced. Leiblum began to send patients to Goldstein, who was at the time a specialist in sexual dysfunction at the University of Boston.
It is estimated that 1% to 4% of women can have symptoms of disorder, although the incidence can be significantly higher, said Caroline Pukall, professor of psychology at Queens university in Canada. Many women are not comfortable to discuss a subject they consider to be private, even with their doctors, she said. Another problem could be the difficulty of people in imagining excitement could be a bad thing.
“Perhaps these are all the hypotheses on how excitement is supposed to feel,” said Pukall. “Most experience the body and the spirit working together in a really pleasant way. They therefore have no framework for understanding this. ”
Pukall said that this could help explain why so little in the medical community are aware of the PGAD, adding: “Admittedly, most primary care providers have not heard of it.”
To raise awareness, Goldstein and other experts – including doctors who focus on sexual dysfunction, psychologists and physiotherapists – have formed a panel to share what they had learned about the PGAD.
In 2021, the panel published a report in the Journal of Sexual Medicine, offering a roadmap to determine the possible causes and treatments for the “extremely painful sexual problem”, which “can be more widespread than before,” wrote the authors.
They noted that the symptoms could first appear 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, undesirable or intrusive, painful, genital excitement.
- Symptoms that lasted three months or more.
- Sensations that could not be associated with any sexual interest, thought or fantasy.
- Burning, tingling, burns, contractions, itching or pain, as well as a feeling of excitement. While sensations would most often be felt in the clitoris, they could also be felt in the vulva, the vagina, the urethra, the bladder and other places near the basin.
The 2021 report included the results of a small functional MRI study which analyzed the brain scanners of three women with PGAD and 12 healthy volunteers. Healthy volunteers were invited to think about sex in the machine, and those with PGAD were scanned when they felt symptoms of the disease.
The brain area that enlightened when healthy volunteers thought of sex, the paraentral lobule, also shone much more brilliantly when women with PGAD were symptomatic.
PGAD is mainly a problem of too unwanted and relentless feeling going to the brain, Goldstein said. Although the paracentral lobule has other functions, in the context of the PGAD, it is a key sensory region of the brain involved in the processing of information from urogenital areas, such as clitoris, vulva and perineum; The pelvic organs, including the bladder, the urethra, the vagina, the cervix and the rectum; And the lower limbs, especially the toes, he said.
More recently, a small study by German researchers using brain analyzes was published in scientific reports in February, with 26 patients diagnosed with PGAD and 26 healthy volunteers. The brain areas associated with the disorder were activated as expected, but the researchers said it was not clear if specific symptoms were linked to the different model of brain activity. The results have given potential areas of interest in future research, they wrote.
In the end, the previous digitization 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 lobule,” said Goldstein.
But it’s still not enough, he said.
“Nervous irritation or irritation of nerve roots can be caused by a variety of factors, including injuries, compression, infections and inflammation,” he said, adding that if the message of irritated nerves arrives in the paraentral lobule, a woman could undergo undesirable genital excitation.
If the doctors could better identify the exact path that led to an unwanted excitation, more women could be helped, said Goldstein.
“This is our work as sex detectives,” he said. “The good news is that we can now really help improve the quality of life in about two thirds of women.”
In general, specialists will deal with the underlying problem that has triggered the disorder to see if the excitations are resolved.
What causes trouble?
The PGAD can result from many conditions that irritate nerves, from back injury to changes in the dosage of certain antidepressants.
Dr. Sharon Parish, professor of clinical medicine at Weill Cornell Medical College, underlines the first case she has ever seen: that of a woman who had stumbled at work and injured her hip a year earlier. As the patient was referred to the parish by her Ob-Gyn, she had trouble finding a position that did not cause her pain.
For Shari Stewart, 63, from Colorado Springs, Colorado, the bottom came when she went to a doctor to get the pain help she felt. She had looked for her online symptoms for years and finally determined that she should have PGAD.
“I told him I think I had Pgad,” recalls Stewart. “I have all these symptoms, and before I could show him the list, he said,” God, I hope my wife has this. And then he gleaned.
Stewart does not think that the doctor never took him seriously.
Even after the consensual report of 2021, a very low percentage of doctors know the disorder, in particular in primary care or internal medicine, said Goldstein. “I estimate that only 5% to 10% of all providers are aware of the PGAD.”
Parish recommends that women suspect that they have developed PGAD to search for the international company for the study of the women’s sexual health website for a list of providers who know the condition and who can offer treatments.
Knowing what was wrong with is what helped April Patterson, 45, recover his life.
Patterson, a physiotherapist from Los Angeles, began to suffer during intercourse at 21 years old. “It was like sciatica pain,” she said. “It would only shoot my leg during sex.”
Then the pain started to occur more often and in more places. “Everything had the impression of tingling, burning, buzzing,” she said.
After years of pain, one day, Patterson saw a unfolding announcing a presentation on pelvic pain linked to nervous problems. “I thought that is what I have,” she said. “I need to go to this meeting.”
It was at this time that Patterson heard Goldstein Talk for the first time.
After several X -rays and brain scanning, the symptoms and Patterson’s pain have been traced to hernies discs in its lower spine. After being treated with a nervous block, its pelvic symptoms were relieved.
A spine surgeon repaired the damaged discs and widened the opening in the vertebral channel where it was too narrow. The procedure has completely fixed the Patterson PGAD and most of its pain.
The experience made Patterson more aware of the amount of women who keep for themselves. In questionnaires, she now questions her patients about unwanted persistent excitement, as well as pelvic pain and other related symptoms.
“And then we can enter the conversation,” she said.
