Persistent Genital Arousal Disorder (PGAD), a condition that leads to a persistent sense of arousal in people’s genitals independent of any kind of sexual stimulation, is chronically misrepresented and misunderstood. Tabloids love to publish click-baiting stories about women with PGAD who orgasm dozens of times a day, typically painting them as sexual oddities and occasionally implying that the condition turns them into nymphomaniacs. And prominent comedians all-too-frequently crack jokes about how great it’d be to develop PGAD.
In truth, there’s nothing fun or sexy about the condition: Arousal without desire is often a disturbing sensation. And when you’re aroused too long, that usually pleasurable sensation can turn into a throbbing, itching, burning, tingling sort of pain. Distress is actually one of the key criteria for diagnosing the disorder.
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Some people with PGAD do masturbate or have sex fairly frequently—but not because they feel hypersexual. Instead, they are often trying to relieve their symptoms. Orgasms almost never resolve PGAD arousal for more than a few minutes, though, and in fact, they can make the sensations worse. Eventually, many people with PGAD start to associate sexual arousal and stimulation with fear and pain, and quite a few end up avoiding sex full stop.
Doctors only defined PGAD as a distinct condition about 20 years ago, and they haven’t reached a consensus on how common it is, what causes it, or how to treat it. The disorder might actually be a common set of symptoms that can be caused by many distinct underlying issues, each of which requires its own unique treatment approach. That would certainly help to explain why people’s experiences of PGAD vary so drastically: Some always have notable symptoms, while others experience flare-ups that last hours, days, or weeks before they return to a baseline. Some have spontaneous orgasms, while others find that they can’t climax anymore. Some don’t just get symptoms in their genitals, but also in their breasts, anus, or throughout their pelvis. And some find they can push through daily life while experiencing symptoms, while others find the sensations of PGAD so acutely distressing and painful that it functionally disables them.
It’s hard enough to find effective guidance or treatment for managing an idiosyncratic case of PGAD even when your doctor is up-to-date on the research surrounding the condition. But most doctors still don’t even know about PGAD, and some are blatantly dismissive or derisive of people with the condition who come in seeking help. This lack of recognition, or outright dismissal and disrespect, in many cases contributes to an overarching sense of isolation, stigmatization, and hopelessness that, alongside the distress caused by physical symptoms, can trigger or exacerbate anxiety and depression. The mental toll of the disorder can have serious effects on people’s intimate relationships as well.
Over the last decade, people with PGAD have formed a few digital support groups to combat their sense of isolation, share new research on and personal experiences with the condition, and connect people with healthcare professionals who both know about the disorder and will be respectful in handling it. Activists within these groups are also pushing, alongside these doctors and researchers, for more study and education about the condition. (Recently, they’ve been lobbying medical authorities to change the name of the disorder to Genitopelvic Dysesthesia. This nomenclature, they argue, wouldn’t be as easy to eroticize or mischaracterize as pleasant or desirable, and would instead communicate that the disorder affects more than just the genitals.) A few people with PGAD have even shared stories of life with the condition publicly, to break some of the stigmas around it. However, accounts of people’s experiences navigating sex and relationships alongside the fundamentally intimacy-altering effects of PGAD are still relatively rare.
VICE recently spoke to Selena*, who was diagnosed with PGAD several years ago, and her husband Greg, about how they’ve managed sex and intimacy while living with the condition.
At their request, VICE has changed Selena and Greg’s names in order to protect their privacy. This interview has been edited for length and clarity.
Selena: I went to bed one night several years ago feeling fine. Then I woke up with an extreme—extreme—sense of arousal, predominately in my clit. Specifically in the right side of my clit. It was as if I was in the moment immediately before an orgasm. I didn’t know what was going on.
I went into the shower to try to relieve that arousal. But after I orgasmed, I didn’t feel any relief. In fact, that just made the sensation even worse. I tried 15, maybe 20 times to orgasm and relieve the feeling, but it never helped. The urge to masturbate is so intense, but it’s basically a trap.
So, I tried to put ice on my genitals to stop the sensation. I cut up lidocaine patches I used for back pain and put them on myself. But none of that helped either. The sensation was unrelenting, all day and all night—it was so bad that I couldn’t sleep. Eventually, I was just sobbing.
Greg: I knew Selena was experiencing some sort of discomfort. But she didn’t tell me about what was going on at first. So, I didn’t really understand where the discomfort was, or what she felt.
“The sensation was unrelenting, all day and all night—it was so bad that I couldn’t sleep. Eventually, I was just sobbing.”
Selena: I’m not religious, but I was brought up in a religious household. I internalized a lot of shame around anything that involves your genitals that made it hard for me to talk about this.
Greg: I tried to ask, ‘What can I do to help?’ I got her anything she asked for. But there wasn’t much else I could do, beyond being there—and trying to understand what was going on.
Selena: After several days of this, nonstop, I decided to go to a doctor and tell him what was going on. He laughed and told me that my husband was lucky, and that he wished his wife would catch whatever I had. Then he got really serious and said that I shouldn’t work with children because I was a danger to them. Needless to say, I’ve never gone back to that doctor again. In fact, I never wanted to go to another male doctor again after that. It was really traumatizing.
After a few more days of constant symptoms, I was seriously considering mutilating myself—getting a pair of scissors and cutting off my own external genitalia. I started researching doctor-assisted suicide. I didn’t want to die, but I didn’t want to live in that state forever.
I’ve since learned that suicide is common among people with this condition.
Greg: I don’t remember when Selena started to tell me about what she was feeling. But when she started talking about assisted suicide, that’s when I really realized the extent of her suffering.
Selena: Two weeks after my bad doctor experience, I got up the nerve to call another doctor I knew in our area. A woman. Of course, to get through to her I had to tell her receptionist what was going on, and I could hear her snickering. That doctor had never heard of anything like this. But she said, ‘I will find you a doctor who knows about this. And you’re not going to talk to any more receptionists. You’re not going to go through any more humiliation.’ Three days later, she called me back and said that she’d found a doctor who might be able to help me. That’s when I started talking more openly about specifically what I was feeling, and where, with Greg.
Greg: Yeah, because that doctor was able to explain what was going on in detail.
Selena: I ended up working with a team of three doctors. It took months, and they had to jump through all kinds of hoops to get my insurance to cover things. But they were able to identify a cause for my PGAD: prolonged use of the fluoroquinolone antibiotics Cipro and Levaquin.
Greg: The year before all of this, Selena had severe diverticulitis and spent two nonconsecutive weeks on intravenous doses of those drugs. Then she was on them again for days after a surgery.
Selena: The doctor who laughed at my PGAD symptoms also liked to hand out Cipro like it was candy. Sinus infection? Here’s Cipro. UTI? Here’s Cipro. I’m prone to UTIs, so he was always prescribing me Cipro. I’ve had other symptoms of overuse of those drugs over the years, like tendon ruptures, vision deterioration, teeth that abscessed. Some people call this ‘being floxxed.’
My doctors explained that the drugs had destroyed the myelin sheath around my pudendal nerve, so now the nerve was basically firing in a way that created these sensations, all the time.
“The doctor who laughed at my PGAD symptoms also liked to hand out Cipro like it was candy. Sinus infection? Here’s Cipro. UTI? Here’s Cipro.”
They gave me a spinal stimulator implant, prescribed me a cocktail of drugs, and told me to use topical lidocaine to minimize my symptoms. I started doing internal pelvic floor therapy, because my symptoms make my pelvic floor spasm up, like a charley-horse. And I can’t do things like wear tight clothes or ride a bike, because they stimulate my pelvic area—my pudendal nerve—in ways that trigger flare-ups in my symptoms. (Greg has helped me find a gel cushion that helps me avoid the risk of setting off my symptoms while driving, or sitting for long periods of time. We’ve still trying to find other solutions, like finding a comfortable bicycle seat with no nose.)
Eight months after my symptoms started, we finally found the right mix of treatments to get me from an unmanageable 10 on the pain scale to a manageable 2. My doctors still say that I’m probably going to live with symptoms for the rest of my life. But I can keep them under control.
For those eight months, I was so focused on the pain, and trying to make it stop, that I couldn’t even think about what this condition meant for my relationship with Greg, or our sex life. I’m a very passionate person, and before this disease came into the picture I loved to make love to Greg. So, as soon as my symptoms started getting better, I started thinking about intimacy again. At some point, we decided to try having sex. But I was so terrified that the stimulation might trigger a resurgence of my symptoms that I was just lying there rigid. Greg noticed that, clearly.
Greg: I felt like I needed to be careful—to try not to stimulate Selena too much or else I might trigger her symptoms. But it’s not easy to have sex without stimulating someone much. And I could see her wincing and grimacing as I started trying to do things with her. It was …
Selena: To be crude, it probably felt to Greg like he was raping me. It wasn’t great for either of us.
Greg: Yeah, that’s a good way to put it.
Selena: I’m so terrified of the risk of stimulation making my symptoms worse that I can’t even bear to be touched in any way that might trigger an arousal response. We can kiss and cuddle, but I don’t want my breasts touched, or a hand between my legs, or anything like that. This condition absolutely destroyed my ability to be intimate with my husband, a man I love deeply.
Prior to all of this, we did have a great sex life. And I’ve learned that I’m fine with never having another orgasm again. But still, when I realized I couldn’t have sex in the ways we were used to, I was devastated. I missed the intimacy of sex. And I find the thought of Greg masturbating alone in the shower is almost revolting. I still want to be involved in his sexual life somehow.
I told the wonderful doctor who helped me find treatment about all of this. I told her that oral sex is out of the question for me as a way to sexually connect with Greg, too, because … [Laughs]. OK, so Greg is built. He could be in adult videos. We’ve tried oral sex in the past, but it’s just not practical for us, physically. So, she suggested that I get an artificial vagina and some lube.
“I know this horrible condition has destroyed so many people’s relationships, and their sex lives, altogether. I’m fortunate to have a compassionate and devoted partner.”
Now, when we want to be intimate, I get close to Greg, he puts his arms around me, and I use the artificial vagina on him. It’s not perfect. But it does allow us to still have sexual intimacy without both of us being terrified of triggering my symptoms. I feel fortunate to have this, because I know this horrible condition has destroyed so many people’s relationships, and their sex lives, altogether. I’m fortunate to have a compassionate and devoted partner. I know he’s in this with me for the long haul, and he’s willing to accommodate anything. He’s been an absolute rock.
Greg: I guess I’m good at accepting things as they are, and dealing with things as they come. The world is the way it is. If something is happening, then we have to find ways to adapt to it.
Selena: I just wish there wasn’t so much stigma around PGAD, so I could talk openly about it with people without them bringing religion or something like that into the conversation. If I had cancer, I feel like I’d be able to talk openly about it. But because this condition manifests in my clit, I feel like I have to use a fake name and disguise my location to have this conversation.
Greg: Yeah, it’d be good to be able to talk to more people, to get other ideas on how to deal with this.
Selena: I did find a Facebook support group several years ago, which helped me realize that I’m not alone—which is a common issue for people with PGAD. Still, our group has to be secretive, and interview everyone before we let them in, because some people do think PGAD is sexy. They think we’re just looking for sex, or that we need sex all the time to relieve our arousal.
The eroticization of this disease is just horrible.
