When arousal hurts: Women suffering rare genital disorder often go undiagnosed

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Mandy Funk, 37, remembers when her body began to betray her.
As a college junior, she began to have episodes in which her body would act as if it were aroused for no reason. Sometimes, she says, it felt like hot sauce had been slathered over her genital area. She had to give up tight-fitting clothes and horseback riding, her lifelong love. Often the pain was so intense that she couldn't sit down.
Funk struggled for years to find a doctor who understood her symptoms.
She eventually learned she had developed a condition called persistent genital arousal disorder (PGAD), which led to treatment. Funk, who, with her husband, owns an electrical contracting company in Goessel, Kansas, did eventually get her life, at least partly, back on track. She's especially happy she can ride horses again with her children, although she still sometimes experiences flare-ups.
Funk is fortunate to have gotten a diagnosis and help, experts say. Many doctors are unaware of the disorder, although there is some growing research.
The condition started to come to light only in 2001, when researchers at the Robert Wood Johnson Medical School in Piscataway, New Jersey, described the experiences of five women with bouts of arousal symptoms that seemed to arise out of nothing. In the report, published in the Journal of Sex and Marital Therapy, the authors, Sandra Leiblum and Sharon Nathan, identified the key feature of the disorder as 'persistent physiological arousal in the absence of conscious feelings of sexual desire.'
The condition was initially called 'persistent sexual arousal syndrome,' but then 'sexual' was replaced with 'genital' because it really had nothing to do with sex, said Dr. Irwin Goldstein, a urologist and director of San Diego Sexual Medicine.
Not long after the 2001 report, Leiblum, then a professor of psychiatry at the Robert Wood Johnson Medical School, concluded that psychology alone wouldn't explain all the symptoms the five women were experiencing. Leiblum began sending patients to Goldstein, who at the time was a specialist in sexual dysfunction at Boston University.
It's estimated that 1% to 4% of women may have symptoms of the disorder, although incidence could be significantly higher, said Caroline Pukall, a professor of psychology at Queens University in Canada. Many women aren't comfortable discussing a topic they see as private, even with their doctors, she said. Another issue could be people's difficulty imagining arousal could be a bad thing.
'Maybe it's all the assumptions about how arousal is supposed to feel,' Pukall said. 'Most experience body and mind working together in a really pleasurable way. So they have no framework to understand this in.'
Pukall said that may help explain why so few in the medical community are aware of PGAD, adding, '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 physical therapists — formed a panel to share what they had learned about PGAD.
In 2021, the panel published a report in the Journal of Sexual Medicine, offering a road map to determining possible causes and treatments for the 'extremely distressing sexual health condition,' which 'may be more prevalent than previously recognized,' the authors wrote.
They noted that symptoms might first appear in the vaginal region, the pelvic area or the spinal cord.
According to Goldstein and colleagues, diagnosis of PGAD, at a minimum, would require that a woman had:
Persistent or recurrent, unwanted or intrusive, distressing sensations of genital arousal.
Symptoms that had lasted for three or more months.
Sensations that couldn't be associated with any sexual interest, thoughts or fantasies.
Buzzing, tingling, burning, twitching, itching or pain, along with a sensation of arousal. While the sensations would most commonly be felt in the clitoris, they could also be felt in the vulva, the vagina, the urethra, the bladder and other locations in the vicinity of the pelvis.
The 2021 report included findings from a small functional MRI study that analyzed brain scans of three women with PGAD and 12 healthy volunteers. The healthy volunteers were asked to think about sex while in the machine, and those with PGAD were scanned when they were feeling symptoms of the condition.
The area of the brain that lit up when the healthy volunteers were thinking about sex, the paracentral lobule, also shone much more brightly when the women with PGAD were symptomatic.
PGAD is primarily a problem of too much unwanted, unrelenting sensation going to the brain, Goldstein said. While the paracentral lobule has other functions, in the context of PGAD, it's a key sensory region of the brain involved in processing information from the urogenital areas, such as the clitoris, vulva and perineum; the pelvic organs, including the bladder, urethra, vagina, cervix and rectum; and the lower limbs, especially the toes, he said.
More recently, a small study by German researchers using brain scans was published in Scientific Reports in February, with 26 patients diagnosed with PGAD and 26 healthy volunteers. Areas of the brain associated with the disorder were activated as expected, but the researchers said it was unclear whether specific symptoms were connected to the different pattern of brain activity. The findings gave potential areas of focus for future research, they wrote.
Ultimately, the earlier scanning study may have been more telling.
'We know that irritated sensory nerves and nerve roots are associated with PGAD and excess brain activity in the paracentral lobule,' Goldstein said.
But that's still not enough, he said.
'Nerve irritation or nerve root irritation can be caused by a variety of factors, including injuries, compression, infections and inflammation,' he said, adding that if the message from irritated nerves gets to the paracentral lobule, a woman might experience unwanted genital arousal.
If doctors could better identify the exact pathway that led to unwanted arousal, more women could be helped, Goldstein said.
'That's our job as sex detectives,' he said. 'The good news is that we can now really help improve quality of life in about two-thirds of women.'
In general, specialists will treat the underlying problem that triggered the disorder to see whether the arousals resolve.
PGAD can result from many conditions that irritate the nerves, from back injuries to changes in dosing of certain antidepressants.
Dr. Sharon Parish, a professor of clinical medicine at Weill Cornell Medical College, points to the first case she ever saw: that of a woman who had tripped at work and injured her hip a year earlier. By the time the patient was referred to Parish by her OB-GYN, she was struggling to find a position that didn't cause her pain.
For Shari Stewart, 63, of Colorado Springs, Colorado, the bottom came when she went to a doctor for help with the pain she was experiencing. She had searched for her symptoms online for years and finally determined she must have PGAD.
'I told him I think I have PGAD,' Stewart remembered. 'I have all these symptoms, and before I could show him the list, he said, 'God, I wish my wife had that.' And then he chuckled.'
Stewart doesn't think the doctor ever took her seriously.
Even after the 2021 consensus report, a very small percentage of doctors know about the disorder, especially in primary care or internal medicine, Goldstein said. 'I estimate only about 5% to 10% of all providers are aware of PGAD.'
Parish recommends that women who suspect they've developed PGAD search the International Society for the Study of Women's Sexual Health website for a list of providers who are familiar with the condition and can offer treatments.
Knowing just what went wrong is what helped April Patterson, 45, get her life back.
Patterson, a physical therapist from Los Angeles, started having pain during intercourse when she was 21. 'It was like sciatic pain,' she says. 'It would just shoot down my leg, during intercourse only.'
Then the pain started to arise more often and in more places. 'Everything felt like it was tingling, burning, buzzing,' she said.
After years of pain, one day, Patterson saw a flyer advertising a presentation on pelvic pain related to nerve issues. 'I thought, this is what I have,' she said. 'I need to go to this meeting.'
That was when Patterson first heard Goldstein talk.
After several X-rays and a brain scan, Patterson's symptoms and pain were traced to herniated discs in her lower spine. After she was treated with a nerve block, her pelvic symptoms were relieved.
A spine surgeon repaired the damaged discs and widened the opening in the spinal canal where it was too narrow. The procedure completely fixed Patterson's PGAD and most of her pain.
The experience made Patterson more aware of how much women keep to themselves. In questionnaires, she now asks her patients about unwanted persistent arousal, as well as pelvic pain and other related symptoms.
'And then we can get into the conversation,' she said.
This article was originally published on NBCNews.com