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.
Posted via web from timmmii
2 comments:
I really like your attitude in this. You are a great romodel for many including me. I hope this disease goes "away slowly".
Yes I agree she is an ispiration to us all.
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