The following true story was told to me by a woman who chooses to remain anonymous for privacy reasons. If you think you have Persistent Genital Arousal Disorder, you can visit this forum for help. I had my first orgasm at the age of 17. I was sitting at my desk at school when all of a sudden, I felt a warm, pulsing feeling in my genital area. My vagina flared up and I couldn't think straight. It was like someone had squeegeed my thoughts away. I was like, whoa, what's that? It felt really erotic and good, but I was also freaked out, scared, and confused. After that, it started happening a few times a day. I searched online for spontaneous orgasms, but all I found was weird porn. It kept getting worse. During my second semester of senior year, I counted orgasms on a sheet of paper. I was having 100 and 200 a day. I ran to hide in the bathroom between classes to relieve the pressure. By the time I started college, the orgasms became even more intense and disruptive, and I was having trouble concentrating. I became really depressed. I didn't know what was wrong with me, and I wasn't getting any better. I cried a lot. I hid in the bathroom. I became violently protective of my privacy. In the beginning, I told everyone I trusted about my condition. People said things like: "You're so lucky!" and "Dude, I'd love to date you." They didn't understand why I wanted it to go away, and labeled me a drama queen. The school psychiatrist thought I was crazy. After my sophomore year, I bought a bunch of vibrators and took medical leave.One day in 2003, a friend sent me an article in the Boston Globe about a newly discovered condition called Persistent Sexual Arousal Syndrome*. When I read it, I started crying hysterically — it described exactly what I was going through. I immediately made an appointment at the institute the article linked to, and after hours of tests, I was diagnosed with PSAS. My engorged genitalia and hypersensitivity made me a textbook case. Every other doctor had thought I was just a delusional hypochondriac. PSAS feels like having a second heartbeat. No, it's more than that. It's alive — it has its own life force, a mind of its own. I often wonder if this is how teenage boys feel about their erections. My parents pretend my PSAS doesn't exist. It makes me feel uncomfortable and rejected. My mother is very conservative — she has trouble saying the word "orgasm" out loud, and she thinks I'm a pervert because I have toys. A couple months ago, out of the blue, she said, "You still having that orgasm problem?" That was only the second time she asked about it since 2003. I sometimes wish I could make reference to it in normal conversations without feeling like a freak, but I understand that PSAS isn't exactly dinner conversation. Every time I do something, I have to evaluate my situation. Where am I? Are there other people around? How well do I know them? What is the likelihood that, if I don't get someplace private in time, things could get complicated? Can I make noise? (Being vocal isn't necessary, but it helps release more of the pressure.) I avoid triggers — things like music with heavy bass, vibrations from riding a train or an idle car, cold air, musky cologne, darkness, stress, scary movies, romantic movies, unexpected touch, a full bladder. PSAS is completely unrelated to sex drive. Watching sex scenes does nothing for me, but the other day, when a friend put his hand on my back, I found it really hard to contain a screaming orgasm. If my heart rate shoots up too high for too long, I flare up. I avoided exercise and gained a lot of weight. One time, I was hugging a male relative and I felt an orgasm arise. It felt really dirty and wrong, and I totally freaked out. Now, I try to avoid hugs in general unless I feel ready for them. I've been with my boyfriend for about six years, but we still haven't had sex. I don't know if I'll ever be ready to do it. Because of a vulvar pain disorder I have that sometimes comes with PSAS, I know it will hurt like hell. Others who have PSAS say that sex is not satisfying at all — the orgasms associated with sex are nothing compared to the ones induced by the condition. Sometimes I wish I could have sex with him because I think he deserves to have a 'real' girlfriend, but honestly, I just enjoy being held by him and not having it feel inappropriate. He's been very patient and understanding; he's my best friend, and we talk every night. I'm 24 now, and have learned to manage PSAS pretty well. I discovered dancing — it's a great alternative to jogging because it's not as cardio-intensive. As long I take breaks between routines, folk dancing or doing salsa doesn't cause a flare up. Last week, I was at the movies and had to leave twice because I was flaring up. Each time, I ran to the bathroom and tapped my heels on the floor to hear if there was anyone else around. Then I locked myself into a stall, braced myself against the stall door, and let the orgasm run its course. I missed about 15 minutes of the film, but that's just one of the many things that result from managing PSAS and its collateral damage. My orgasms feel like a cosmic joke. I don't know why this happened to me and not someone else. If I didn't have PSAS, I'd be much more outgoing, and I probably would have finished college two years earlier. I'd have a normal sex life. I feel like I'm lugging around a shadow, a ghost that I just can't shake. It depresses me that I'm stuck with it, probably for the rest of my life, but strangely enough, I don't want to be cured instantly of PSAS. It appeared suddenly in my life, and if it disappeared just as suddenly, I would always be looking over my shoulder, and I'm not sure I would know who I was. I would rather have it slowly fade away, but if it doesn't, well, I'm doing my best to make peace with this part of my life. *The name of this condition was recently changed to Persistent Genital Arousal Disorder to remove the stigma that this is a sexual disease. PGAD will be officially recognized in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which comes out in 2012.
I'm a contributing editor here at Boing Boing. I also have a blog (TokyoMango), a book (Urawaza), and I freelance for Wired, Make, the NY Times Magazine, PRI's Studio360, etc. I'm @tokyomango on Twitter.