Recently I got a call from a really distressed young woman. Through tears she explained that she'd had what seemed like an orgasm while exercising but there was no resolution, the stage after orgasm where the body goes back to relaxation. She'd already been to multiple medical doctors and looked online for answer, but only got a diagnosis of Persistant Genital Arousal Disorder and not solutions to fix it.

I imagine some of you are skeptical, thinking, "how can prolonged pleasure be that bad?" So I'm gonna foster some empathy. Kiddie pool, ice water, crotch. 

[theme music]

One ice bath might feel exhilarating but I can dry off and change my clothes. My crotch staying over simulated indefinitely is not exhilarating. Those afflicted with Persistance Genital Arousal Disorder have described it as irritating torture, intrusive, unwanted, would rather cut out all my reproductive organism that have it go on like this. In an interview with ABC news, Heather Deerman said she would rather never have another organism that to have this problem.

And that makes sense. When a penis is aroused for more than four hours, it's considered a medical emergency called priapism. You know what the French call orgasm? La petite mort - "the little death." If we taking this as an indication of what coming feels like, the young woman calling me had basically experienced a weeks worth of dying. With no foreseeable end, that's real.

The symptoms: feelings of persistent, spontaneous, intrusive, unrelenting, and unwanted physical arousal, such as throbbing, pulsating, engorgement and/or pressure and discomfort in the genital tissues, including the clitoris, labia, vagina, perineum, and/or anus, without sexual desire or interest, to varying degrees of bother.

A lots of people with this disorder also have restless leg syndrome and the frequent urge to urinate; stress and depression too. Having an illness that the medical community and the public in general know little about can be really isolating and lead to feeling ashamed and sad.

The causes: vascular, neurologic, pharmacologic, hormonal, idiopathic. Basically, it could be related to how blood does or doesn't move through the genitals, something in the brain, a side effect of medication, a reaction to changes in hormones, or something completely unknown. When I read through the list of possible causes, it sounds like this in my head:

[overlapping] "Pelvic congestion syndrome, ovarian venous incompetence, large varices draining the genitalia, Tourette's Syndrome, epilepsy, post-blunt central nervous system trauma, post-neurosurgical intervention of central arteriovenous malformation, cervical and lumbosacral surgical interventions, pudendal nerve entrapment or hypersensitivity, use of certain antidepressants such as the serotonin receptor antagonist, sudden withdrawal of selective serotonin re-uptake inhibitors, initiation and discontinuation of hormone therapy in postmenopausal women, excess use of herbal estrogens in over-the-counter agents."

There's a lot of could be explanations, but it's been notoriously difficult to pinpoint what really sets any of it off.

Treatments: You might think "masturbate" or "have sex," but this can actually make things worse. According to neuroscientist Marcel Waldinger and his colleagues, sexual contact does not diminish symptoms like you'd hope, it aggravates them. To treat Persistant Genital Arousal Disorder, start by calling a gynecologist and making sure they know what you're experiencing is serious and real. 

They may suggest cognitive behavioral therapy, new coping strategies, local anesthetic, electro-convulsive therapy, hypnosis, change in medication, maybe even surgery to correct the nerve, or distraction. In one case which I think this worth noting, a patient with lifelong Persistant Genital Arousal Disorder took varenicline to stop smoking and the arousal symptoms when away. When they stopped taking the varenicline, the symptoms came back.

It's important that you find someone who is competent at sorting through the potential causes and treatments, someone who that Persistant Genital Arousal Disorder has led to multiple suicides and needs to be treated accordingly. Telling you to become a lesbian, get a hobby, or that it's all in your head are unacceptable responses.

The solution: we as a community of sex-positive people have a responsibility to inform ourselves and hold safe space for those who aren't otherwise understood. We get to be the people who pursue answers, solve problems, and teach those around us that icy wet crotch and persistent arousal aren't pleasurable for everyone. The solution is to stay curious.

This episode is dedicated to all of you who've ever felt alone in your experiences or misunderstood. I hope you find a community here in Sexplanations that supports and validates you like they have me.