Uncontrollable Orgasms

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Art by Neka King.

There’s a piece of advice we hear over and over: Trust your gut! Listen to your body! The assumption here is that our bodies will tell us the truth. But Angie has a body she can’t trust. Instead of bringing her closer to people, her body often leads her into danger — and makes her feel dangerous herself. 

As a kid, Angie hated a lot of things. She hated wearing jeans. She hated when her mom kissed her. She hated going down slides on the playground. She hated these things because of the way they made her feel. It’s the feeling Angie would struggle with every day for years to come: an intense, uncontrollable, overwhelming feeling of arousal. 

Read the full script of this Bodies episode. 

The first time Angie felt this was in kindergarten. One day, during naptime, while the other kids were sleeping, Angie took off her shirt and started kissing the boy next to her. When the teacher saw what she was doing, she came over and grabbed Angie’s hand and pulled her over to the teacher’s desk. Angie remembers the look of horror on her teacher’s face. 

Angie doesn’t want to feel dangerous. So for years, she isolates herself from friends and family and spends countless hours alone in her room masturbating. And she doesn’t tell anyone because she’s deeply ashamed. Orgasms are supposed to be a pleasurable experience but for Angie, they can be painful and sometimes spontaneous. 

What’s causing Angie’s body to go haywire? Why is she always aroused? How can she have meaningful relationships when her body is playing tricks on her?

This episode of Bodies is about the connection between desire and arousal and how we can only build intimacy with others when we truly trust ourselves. 

Discover more about PGAD:

-PGAD Facebook support group
-PGAD Disorder FAQ
-PGAD Newsletter 
-Diagnosis and treatment 
-Sign up for a weekly PGAD fact on Twitter until November 2020

Things to read: 
-Is It OK For My Child To Masturbate?
-Come as You Are
-These Men are Constantly Having Orgasms 
-Being Constantly Aroused is Living in Hell

Subscribe to the Bodies podcast, every episode follows one person solving their own medical mystery.

Join the Bodies Facebook group here.

Script:

ALLISON: Angie lives in a small city in Minnesota and she has this sweet midwestern way about her. 

ANGIE: ...And I'm like holy buckets, that’s what this is?

ALLISON: But the thing I really like about her is that she has a scrappy side too. She curses a lot.

ANGIE: Fuck a duck... 

ALLISON: But even her cursing has its quirks. We’re in her home, sitting on her bed. It’s a mattress on the floor, covered with a bunch of pillows. A half-finished puzzle sits on a coffee table. And her crochet supplies are tucked next to her desk. There’s a lot of stuff in here. And looking around, you get the sense that she spends a lot of time in her bedroom. 

ANGIE: Deep breaths, Angie...ok.

ALLISON: We’re getting ready to start our interview and her dog settles into her lap. I can tell that Angie is nervous. 

ANGIE: I was really, like, feeling a lot of dread last night about today. And I'm like, I know that this is all really cringy, but it might help people. So buck up and just tell your damn story. 

ALLISON: There’s a piece of advice we hear over and over. Trust your gut! Listen to your body! The assumption here, of course, is that our bodies will tell us the truth. But Angie has a body that, for a long time, she couldn’t trust. Instead of bringing her closer to people, her body has led her into danger. And made her feel dangerous herself. 

ANGIE: I want to be close to people. I want to be intimate with people and have like genuine relationships that are based on trust and love. But it doesn't feel like I'm fully capable of that because there is this little monster in me.  

ALLISON: I’m Allison Behringer and this is Bodies, a show about people solving the mysteries of their Bodies. 

Angie’s story, after this short break. Also a heads up, this story includes cursing and discussion of sex and abuse.

ALLISON: As a kid, Angie hated a lot of things. She hated wearing jeans. She hated when her mom kissed her. She hated going down slides on the playground. She hated these things because of the way they made her feel. Most of all, she hated riding the school bus.  

ANGIE: Having the bumps and all of the vibrations on the bus, it just created this feeling in between my legs. It's kind of electric. It kind of makes my body just start to buzz, like a tingling pins and needles sensation.

ALLISON: It could be painful, too. 

ANGIE:  I've always had a trick of just sitting like on the side of my leg instead of directly on my butt. That kind of helps to just have a buffer from the vibration. It was just stressful. It just made me feel embarrassed and like I couldn't wait to just get off the bus. And I didn't...I mean, I didn't understand why it was happening. 

ALLISON: What was happening was that vibrations from the bus were making her feel turned on. It was the thing that Angie would struggle every day for years to come: an intense, uncontrollable, overwhelming arousal. But, at the time, she didn’t know these words. What she DID know was that what she was experiencing was somehow wrong. The first time Angie felt this kind of wrong was in kindergarten. One day, during naptime, while the other kids were sleeping, Angie took off her shirt and started kissing the boy next to her. When the teacher saw what she was doing, she came over and grabbed Angie’s hand and pulled her over to the teacher’s desk. Angie remembers the look of horror on the teacher’s face. 

ANGIE: And she said that's inappropriate. And then I had to go spend the rest of my nap times for the rest of the year next to the teachers desk.

ALLISON: All of her nap times. Away from the other kids. Because of one moment that Angie was too young to even understand, the message that Angie got was that she was too inappropriate to be around other children. And that stayed with her for the rest of her life.  

ANGIE: To be that little and have somebody tell you that. Like you're almost dangerous. Like that I was doing something so wrong that other people aren't safe around me. And I need to be separated from everybody else because of it. 

ALLISON: And so on the school bus, Angie mostly sat alone, trying not to let her feelings show, and worried that the other kids could just tell what was happening inside her body. The problem was, the sensations didn’t go away when she got off the bus. They stayed with her all day at school, taking over her thoughts and making her feel uncomfortable. And by the time she got off the bus ride back home, she couldn’t keep it together any longer. She threw things, yelled, scratched at  her older sister. She’d go upstairs into her room where she could be alone. And she would rub herself against her stuffed animals, notably a big green teletubby. She wasn’t imagining sexy things. It was just a thing that felt good. 

 ANGIE: And I remember wanting to talk to my sister about it. But feeling just like I was doing something wrong. And then I mean, the longer I did it, the more it felt like something to be sneaky about. 

ALLISON: When Angie hit puberty, the urge to masturbate became constant, as the arousal got more and more intense. 

ANGIE: It's kind of like having to sneeze and not being able to sneeze, but in your vagina.

 ALLISON: She knew that it was normal to start to feel sexual at this age, but no one seemed to be THIS turned on, ALL the time. And by the slightest things. Like sitting on a hard chair at school or seeing a couple holding hands in the hallway.Or like when she would go to concerts, the bodies brushing against hers and the beating bass would set her off. She’d feel a painful throbbing in her genitals, shooting down her legs and burning in her clitoris.  It would make her chest tighten and her stomach twist. 

ANGIE: And as it gets stronger, I start clenching my body. Trying to make the feelings stop. 

ALLISON: But once the horny feelings started revving up, there wasn’t much she could do to stop them. Masturbating and having an orgasm could make it go away for 10 or 20 minutes, but it would just come back, stronger and more intense. To be clear, these are NOT fun orgasms. 

ANGIE: It gets to a point where it doesn't even feel good anymore and you're just doing it to try and alleviate some of this... arousal. 

ALLISON: This made things like homework extra hard. She was a smart kid who loved to read and really wanted to do well in school. But when she’d go to her room and try to do her homework, she just wasn’t able to focus on anything besides trying to get the arousal to go away. On especially stressful homework days, she could have up to 10 orgasms in one afternoon.

ANGIE: I mean I spent a lot of time just alone in my bedroom, masturbating for hours and hours and hours because it doesn't stop. And then the shamey feelings come creeping in. Like, this is how you're spending your day you're so gross

ALLISON: She wanted people to understand what she was going through...But like, how do you explain to your teacher that you couldn’t finish your homework because you spent the afternoon getting off? How do you tell your mom that you feel horny when she kisses you? And how do you explain to her that the REAL reason you started doing your own laundry is because everyday you go through multiple pairs of underwear that are wet from being turned on all day. So she never told her family, or anyone else. She kept the secret locked inside her. And as she grew, her childhood tantrums turned to adolescent fury.  

ANGIE: My first response to things that felt inappropriately sexual. It would just be anger, I would explode and then melt into a puddle, just full on angry screaming. And then immediate regret and just crying.

ALLISON: To her family, she was Angry Angie, crabby Angie — and they didn’t know what was going on or what to do about it. She would get in trouble for yelling and talking back. Her family never understood that their daughter wasn’t just being a difficult kid, that actually she was in a lot of pain. Her dad’s way of helping her calm down was to take her out on a drive. They’d get ice cream cones, put in a Queen CD, and drive through the countryside.

ANGIE: And that always felt so special and...loving. But at the same time, his car, every vibration, every bump felt so sexual and so inappropriate that it was like I was having these two completely different experiences at the same time. One of them was very sexual and almost unbearable.  And the other one was me loving my dad. It was so hard to reconcile those two things at the same time. And then I was like, do I want to have sex with my dad? 

ALLISON: It was terrifying and the thought of it DISGUSTED her... but her body was telling her that she was turned on. 

ANGIE: Because it's like I have this dirty secret and I feel like a pervert.  A lot of times I'm just like, why do I feel sexual right now? I don't want to be.  It felt like something else was in control of my thoughts. It didn't seem like I could trust my brain. Am I like the making of someone who's going to sexually assault somebody? Like is this how it starts? Do you just have, like, these horrible feelings in your body that you can't control? 

ALLISON: And so Angie pulled away from the people who loved her. She felt like a bomb waiting to go off. And she didn’t want anyone she loved near her when she did. In 7th grade, Angie got a crush on a boy in her grade.

ANGIE: He had the most beautiful eyes. They were bright blue. And he smelled so good. He wore like Hollister Cologne. Even just sitting close to him would make me super wet, and I would attribute that to just me really liking him. You know, like I must be just really into this guy. 

ALLISON: And so as one does in middle school, Angie had her friend ask him out for her. 

ANGIE: I remember one night when we were just sitting in my living room and watching that 70s Show, drinking Sunkist. And I started feeling like the wetness happening in my pants. He made a comment that it smelled like tuna. And I was so embarrassed. And I was.. I blamed it on my  cat who was nearby. I'm like, that's just my cats gingivitis. She has really bad breath. And I was just so mortified. 

ALLISON: If just sitting next to someone was turning her on this much, she was afraid of what her body might do in the future. One night, she rode her bike over to hang out in his garage.  

ANGIE: And he was upset that I didn't want to make out, and he pushed me up against the wall trying to be sexy. But it felt more scary. And he...he lifted his hands up my shirt. 

ALLISON: A voice in Angie’s head was warning her: 

ANGIE: Saying, get out of there. You don't feel very safe right now. This can't be love. 

ALLISON: But Angie also felt herself getting wet and another voice...

ANGIE: Let him take off your shirt, let him touch your boobs. 

ALLISON: The rest was a blur. Angie just remembers getting on her bike and riding home. 

ANGIE: It’s confusing because. Like, did I enjoy that situation that just felt so unsafe? What is it that's making me stay so aroused? When mentally, I really don't feel like, like I want any part of that. 

ALLISON: And so how was Angie supposed to know if she actually liked someone? What was safe, and what wasn’t? Because the thing was, any strong emotion could set her off. Yes, joy and excitement made her feel aroused. But the negative emotions made her feel turned on too; embarrassment, anxiety, and worst of all, fear. After high school, Angie moved out of her family home and began a series of long term relationships. Sometimes, the sex was good. But mostly, it was painful. 

ANGIE: I haven't had a partner that I've been completely transparent with about, like, what I was feeling.

ALLISON: Angie says that many of these boyfriends turned out to be sexually or physically abusive. And of course, it’s never the fault of the person experiencing abuse, but that didn’t register for Angie at the time. She felt like she was to blame.

ANGIE: Because I had this body that I didn't understand and it would make me feel like punishable. I just felt like I deserved shit. It’s tricked me into being in situations that I only realize I don't want to be in until it's too late. Like sex is supposed to feel good and it's supposed to be something that you enjoy. So I would go into these situations with the best intentions and hoping things are okay. And then time and time again, it turns out that I really don't want to be intimate with this person, and it's just such a scary feeling. It's like why am I doing this over and over and over? Yeah, that's why I just had to stop. I had to stop having sex. I don't trust myself.

ALLISON: And so at 24 years old, Angie made a pact with herself: no sex, no boyfriends. She was very lonely. She did talk to her sister almost every day. She lived a few hours away and Angie would call her and tell her about her day. Or she’d turn on video chat and have her sister keep her company while she cleaned her room. Her sister knew Angie was depressed and anxious and had a history of bad relationships. But her sister didn’t know her biggest secret. Her sister would be the person to tell, but what if Angie told her and she didn’t get it?  What if her sister thought she was a monster too? She could lose the person closest to her in the world, and then where would she be? Angie self harmed and thought about suicide. She was in chronic pain. And for years now, she’d been dealing with the very worst part of all of this. Out of nowhere, her body would be hit with spontaneous orgasms. Painful jolts that would run down her legs and make her body contract and convulse.

ANGIE: That feels like an assault. Because it completely takes you out of the moment, it completely stops you in your tracks.It's like being assaulted by my own body

ALLISON: Sometimes it happened in public. It was humiliating. And it isolated her even more. So there she was, Trapped. Pacing around her bedroom. The arousal, shame, and anxiety growing into a tighter knot. She tried going to college three different times, but kept dropping out.

ANGIE: I just couldn’t focus. And I..I hate living with, like, all of these can’ts my life like, I can't do this. I can't do that. And it's like, do I just not have enough, like, mental tenacity to do it? Am I just not strong enough?

ALLISON: Or was there some other explanation? Angie HAD come up with theories.

ANGIE: UTIs or an STD or something? OCD with groinal response? Fucked up mental disorder? Hypersexual? Bipolar disorder? I’m just evil? Depression? Borderline personality disorder? I’m secretly a monster? 

ALLISON: She had already spent years of her life cycling through these theories. She had tried googling and tried getting help for some of her symptoms. But none of the doctors dug deeper, or asked questions about her sexuality. And she didn’t bring up the horny feelings. She was too ashamed and too afraid of what she might find out about herself. And then, when Angie was 25 years old, she landed on an antidepressant that actually worked for her. And it was in that window of clarity, when the fog lifted, that she resolved to get to the bottom of what was going on. And so Angie started making appointments with doctors, therapists, chiropractors, but Angie still wasn’t talking about the horny feelings. She still didn’t have an answer. And THEN, she went to pelvic floor physical therapy, thinking that it could help with her chronic pain. This is where a doctor treats pelvic muscles through stretching, strengthening and often internal massage. 

ANGIE: Before my sessions with her, my pelvic floor wasn't something that I had ever thought about. That was not a part of my body that I was aware really existed. And when it came time for this physical therapist to do these internal massages in my vagina, she would remark that I had an incredibly tight pelvic floor. And that's when I sort of realized I think this is just a physical thing.

ALLISON: And that's when something clicked: she started to believe it wasn’t in her head. Maybe there really was something physical going on in her body. She went home and started researching, with new energy and new words. She googled arousal, hypersensitivity, adding “TIGHT PELVIC FLOOR.” And then, she found it:

ANGIE: Persistent genital arousal disorder.

ALLISON: Persistent genital arousal disorder. PGAD. It’s a sexual disorder with, well, persistent, unwanted and uncontrollable genital arousal. And then she read the next part: it’s arousal without sexual desire.

ANGIE: When I saw that the arousal would start without desire, that exactly described what I was feeling. That meant that I wasn’t the only person who experienced this, and that maybe I could find help. 

ALLISON: And so Angie found a gynecologist who knew about PGAD, Dr. Khalife. In March of 2019, she had her first appointment. She was very nervous.

ANGIE: He was immediately very nice and gentle and like yes, I believe you have this. And you are not the only one. And he just he validated everything that I had been feeling my whole life. 

ALLISON: He explained to Angie what he knew: the first mention of PGAD in medical literature was less than 20 years ago. There haven’t been enough studies to determine how prevalent this is, but one survey estimates that it affects about 1% of the population, which means that over 3 million people in the United States could have it. And to understand how PGAD works, you have to understand that sexual arousal has two components: The first part is physical — it's like a reflex, when the doctor hits the top of your knee and your foot kicks up. If your genitals are stimulated, a signal is sent to the spinal cord, hormones are secreted, and then by reflex, that can cause increased blood flow, lubrication, erection. It’s something that happens without you consciously thinking about it. The other part of sexual arousal is mental, it’s all about thinking. It's about being in the mood, or being attracted to someone. In other words: desire. The way that the mental and the physical interact is complicated and different for everyone.

What’s going on with Angie is she’s constantly experiencing a VERY intense version of that first physical part — but without the second mental part. A lot of people with PGAD will get misdiagnosed as hypersexual. But there’s an important distinction; hypersexuality is having a lot of sexual desire. And of course, how much desire is too much is a cultural question, not just a physiological one. And diagnoses like "hypersexuality" depend on treating some levels of desire as normal and others as disordered. But in Angie's case, her diagnosis is based on what is happening inside her body, and a mismatch of the physical and the mental. PGAD is that arousal reflex, without the desire. This was a revelation for Angie because it meant that she WAS NOT attracted to her family members and friends. She WAS NOT going to sexually assault someone. It was her body causing an uncomfortable reflex.

ANGIE: When I got my diagnosis, I stopped fearing that I was going to grow up to be a bad person. And I realized I was just someone with a medical disorder, not a monster in the making. 

ALLISON: There are a couple of theories about what causes PGAD. It could be  from physical abnormalities on the genitals. It could be from going on or off antidepressants like SSRIs. Or it could be something to do with the nerve sensitivity or the spinal cord. This nerve theory is the one that made the most sense to Dr. Khalife, especially when he learned that Angie often feels she has a UTI. And that’s because the nerve that connects to the genital area also connects to the bladder. And here’s the other important thing to know; there’s a psychological and social aspect to PGAD, too. Feeling ashamed has a very real physical impact. Every time that Angie gets aroused, her mind interprets those physical sensations as shameful, and this makes her really anxious. And then the anxiety causes her to clench her body and focus on the physical sensations even more. Which then leads to even higher levels of arousal.

Stopping the cycle was going to require a holistic approach. For his part, Dr. Khalife prescribed numbing creams and drugs and talked to Angie about options for surgery. He also connected her with a support group, gave her names for doctors to reach out to and encouraged her to continue with therapy. Dr. Khalife was really upfront with Angie; there aren’t any known cures to PGAD. It was gonna be a long road. But the diagnosis itself changed something for Angie; it transformed the dark secret into the truth.  And she was able to see that the danger was not coming from her and her body. The danger was in the shame. The shame that had silenced her and and the shame that had  isolated her from the people she loved. Angie decided to tell her family. She invited her mom over for coffee. They sat in her living room.

ANGIE: It was like, Mom, this is who I am. This is what I have. And she was just loving and hugged me and I was able to say, this is why I don't want to kiss you. And it's not about my lack of love for you. It's just how uncomfortable I feel. It has nothing to do with you at all. 

ALLISON: Then she called her up her sister on video chat. Her sister cried with Angie as she explained her disorder.  

ANGIE: When I got to tell these two people — like, not my secret, but the truth — it’s like: this is the beginning of something better.

ALLISON: It’s been nearly a year now since her diagnosis. Things are still hard for Angie. So far, none of the treatments have cured her. She still has spontaneous orgasms. And there’s still days she can’t even get out the door to walk her dog because she’s so aroused and anxious. The difference now is that she can call her mom, explain to her that her disorder is acting up and ask her mom to watch her dog for the day. And Angie’s mom gets it. And Angie has been making a lot of progress. She’s continuing to work with Dr. Khalife. She’s seeing more specialists and trying different medications. And almost every day, she’s on the PGAD support group, asking questions and sharing advice. When she starts to feel the arousal intensify, she takes a hot shower, works on her puzzles and crafts, and really tries to focus on her breathing instead of letting it upset her. And on the really bad days when the arousal won’t go away, when she masturbates, it doesn’t feel as shameful. She is actively re-interpreting the physical feelings and giving them new meaning.  

ANGIE: It feels like when I masturbate now I'm treating a medical condition. Like I'm just trying to create so much pleasure for myself now that I am allowing it to feel good

ALLISON: She also bought a fancy vibrator for herself. 

ANGIE: I remember being so excited when it came in the mail and the U.P.S. guy brought it and I’m like “ah my vibrator!” And he's like, “that's too much information.” But I was just so excited.

ALLISON: So what are we to make of the advice to listen to our bodies? Here’s what I’ve learned from Angie: Our bodies do have important messages about our sexuality. But here’s the key: We are the interpreters of these messages. It is up to us to make sense of our bodies.

ANGIE: It was hard to trust my body when I didn't understand it. But now I'm starting to understand how it works a little better. It's like I'm... I'm just getting to know myself, you know? I just feel like moving forward, I'm on a good path.

ALLISON: About six months after her diagnosis, Angie and her sister went to see Angie’s favorite artist, Your Smith, play at a record store in Minneapolis. They got spots right at the front. As they were waiting for the show to start, Angie started to notice the arousal coming on. And so she turned to her sister

ANGIE: I think I just even gave her a look, like I'm just like, oh my God, like it's happening. And then she knows. She just held my hand. We just started like swaying together, just waiting for the show to start. Whenever I have those moments where somebody gets what I'm feeling and I’m not alone. I don't know. That just fills me up. That can hold me over ‘till the next day; just to have somebody know what I'm dealing with.  And love me anyway.  

YOURSMITH: Can I play a new song?

ALLISON: Yoursmith jumps up onto the small stage. Angie and her sister stand shoulder to shoulder, singing along together.

Credits

Host:
Allison Behringer

Host and Producer: Allison Behringer
Associate Producer: Hannah Harris Green 
Editor: Stephanie Foo
Composer/Sound Designer: Dara Hirsch
Mix engineer: Myke Dodge Weiskopf 
Additional editorial support: Sharon Mashihi, Camila Kerwin
Story Consultants: KalaLea, Caitlin Pierce, Cass Adair
Research Assistant: Liz Charky 
Managing Producer: Kristen Lepore