IT HAPPENED TO ME: I Developed Persistent Genital Arousal Disorder

I am plagued to stay right on the brink of orgasm for hours without finding any sort of relief. At all.

Feb 13, 2014 at 2:00pm | Leave a comment

When I say, “My libido is unstoppable,” I’m not hoping to paint myself as some sort of wanton vixen or glean the benefits of unabashed sexuality -- quite the opposite, actually.
 
I have what is called Persistent Genital Arousal Disorder, which is easily the most near-sighted, stigmatizing title the medical community could’ve named it.
 
Basically, it is a perpetual contraction in my uterus, not unlike ongoing labor. However, this doesn't hurt quite as much because there's no baby in there. Because this is also the same thing that happens when a woman climaxes (to aid with conception), I am plagued to stay right on the brink of orgasm for hours without finding any sort of relief. At all. No matter what I try. They should have named it Persistent Female Blue Balls. 
 
A few months after I turned 30, I was at my computer one night after my husband and I made almost abnormally sensual love. As I sat there, I kept getting waves of arousal that caused my toes to keep pointing, my calves to keep clenching, and my back to keep arching as convulsions swept up my spine.
 
I realized that, during sex, I hadn’t gone over that tiny edge to complete satisfaction, and my body was still hot and bothered. I scampered out of the room to treat myself to a finale, but after about 20 minutes of hot-and-heavy me time to no results, I peeked my head back in and, giggling a little, I asked my husband for help.
 
After another 30 minutes with all the props, bells, and whistles, I realized I was only getting more frenzied instead of peaking, and I began to panic. 
 
My husband also sensed something was wrong and immediately began searching online for anything regarding “perpetual arousal” or “unable to orgasm,” while I writhed around, panting and sweating and arching my back as if I was on ecstasy. After what felt like an hour, he found an account of a woman who suffered from Persistent Genital Arousal Disorder
 
In the article, Gretchen Molannen described the exact sensations I was experiencing -– the feeling like she had an itch she couldn’t quite scratch, the inability to focus on anything, the worsening of the sensations when she attempted to relieve herself, and that the tiniest pleasurable feeling sent her into uncontrollable passion. 
 
She stated that, for no apparent reason, she was suddenly afflicted with the condition and could find no one who would validate what she was feeling. When she desperately went to seek medical help, doctors laughed and said, “I wish my wife would have that,” and told her maybe it was purely psychological.
 
Because the disorder was only recognized and validated in 2001, she spent years prior trying to “cure” herself and was diagnosed with Carpal Tunnel Syndrome after spending weeks trying to find even a moment of relief from the swelling and pain. In fact, she was unable to have romantic relationships because being physically intimate sent her into hours of torment. 
 
In December 2012, just before the article was to be published in the Tampa Bay Times, Gretchen Molannen committed suicide. She had been denied the disability payments she needed in order to survive since she was unable to keep a job. She was 39 years old.
 
After I finished reading, I took a moment to freak completely the eff out. I then sat in an icy sitz bath to stop the engorgement and help the blood vessels constrict from my catcher’s mitt-sized genital region.
 
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It was exactly as much fun as it sounds, but far less comfortable. I was able to get a few hours’ sleep with an ice pack between my legs and a sleeping aid. 
 
When I woke up the next morning, my abdomen ached from the endless contraction, and I was so sore that my body shook when I walked. The short drive to my daughter’s school was torturous, and I fought to keep from yelling every time we went over a bump. While making lunch, I caught myself gripping a cucumber I was washing too enthusiastically and burst into tears at the realization that I was a nymphomaniacal freak show. 
 
To my surprise, none of my confidantes balked at my frantic explanations, and each encouraged me to call my doctor immediately. When the nurse at my OB/GYN’s office didn’t hesitate to schedule an appointment for the next day, I blurted, “Really? You believe me?!”
 
She said, “Yeah, dude, that sounds awful. You gotta get in here and get that checked out.”
 
I hung up the phone before crying with relief.
 
My doctor explained that a number of factors have been known to cause PGAD since it has been more thoroughly researched in the last decade. She first checked my IUD via ultrasound to make sure it hadn’t shifted to cause the involuntary contractions, but to no avail.
 
Another possible cause is known as a Tarlov cyst, a perineurial growth that appears on the spine and causes the symptoms I was experiencing. Unfortunately, the expenses of an MRI and possible surgery lead me to keep searching for other information and treatments.
 
I’ve spent time researching to distract myself from the pain and rampant preoccupation with sexualizing everything I touched. On Reddit, women discussed first experiencing symptoms of PGAD as adults, just like me. There were a few who had had it much longer. One gal told her mother she started feeling it when she was just 5 years old, to which her mother replied, “Oh, I’ve had that all my life!”
 
Suddenly, this horrible affliction didn’t seem so freakish and terrifying; it seemed more common and treatable than any of the sensationalist news stories would have me believe. 
 
I’ve been terrified to talk about this publicly. Primarily, I realize how far-fetched it sounds and, after suffering mental illness for decades, I’ve learned how difficult it is to find support when people believe I am fabricating symptoms to garner attention.
 
Additionally, I was afraid my friends would distance themselves in fear I’d voraciously attack them or their spouses. Alternatively, I became paranoid that someone might take advantage of my raging libido, and I began to dress to hide my body so I wouldn’t attract attention to it.
 
Agoraphobia wasn’t the only reason I started staying at home; riding in cars became a discomfort I was quick to eschew. If I need to drive anywhere farther than 15 minutes away, I do so with ice in my lap.
 
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Over time, I’ve discovered ways to keep the discomfort to a minimum. I started taking herbs and homeopathic remedies and practicing yoga daily to tackle the tension. I found that cardio provides enormous relief to the swelling as it draws the blood from my groin back out to my limbs.
 
Also, keeping both my mind and hands occupied makes me forget about it almost completely, so when I’m not writing, I’m busy getting all my ironing or crafting done while I catch up on all those movies I missed in theaters. 
 
I’m practically a superhero, propelled by my indefatigable vagina!
 
Excitingly, sometimes all of the symptoms will vanish, and my body will suddenly relax into a neutral state for arbitrary amounts of time. I’m able to dress comfortably and enjoy basic tactile sensations without my eyes rolling back into my head in arousal. During these breaks, I have the luxury of achieving orgasm with the normal amount of passion and euphoric release afterward. 
 
However, even on the worst days, I have never considered ending my life over this. It breaks my heart that Gretchen Molannen didn’t have the same access to support and medical information as I do, but I deeply admire her courage in being among the first to speak publicly about it.
 
With so many available resources like her story and the public commentary, I was immediately reassured I’d find adequate treatment and could tackle it head-on without shame or denial. 
 
Things do not have to end the way they did for Molannen, and I’m OK publicly laughing about catching myself jerking off produce if it’ll open others up to having this conversation for themselves or women they love who may suffer in silence. That I have always been comfortable talking about my body and my sexuality has been of enormous benefit; many experts surmise that, of the thousands of women who suffer from PGAD, only about 60 percent have discussed it with a medical professional. 
 
I’m not a freak. I’m not a nymphomaniac, a sex addict, or even a seductress. I’m just a woman with a physical disorder who deserves to be respected and treated with care like anyone ,else suffering an illness. That can’t be too much to ask.