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143 11 “It’s Hard to Say” Moving Beyond the Mystery of Female Genital Pain Christine Labuski It’s red. It’s raw. I get these little cuts. It itches. It’s irritated. It feels like sandpaper, like someone poured acid on me, like ground glass. It’s stabbing. Knifelike. It feels like you’re taking a knife to me. It’s going to hurt. I want to pull my knees in. It’s really sensitive. It feels like a razor cut. Like a wire of pain. I just tense up. It itches so much I just want to tear my skin apart. It’s like there’s a wall in there. A wall of pain. It’s that one spot. It feels like someone hit me with a sledgehammer in my crotch. It burns. Like someone put lighter fluid up there and lit a match. Like I’m sitting in fire.1 Dr. Robichaud: So, tell me what’s been going on. Deirdre: It hurts. Dr. Robichaud: Where? Deirdre: Down there.2 On a Friday evening in August 2009, I sat down to watch a special episode of the ABC news program 20/20 entitled “Medical Mysteries.” A friend had alerted me about the show because she’d heard that it was going to feature vulvar pain, a condition I had been researching for most of a decade. Though I have a background as a women’s health clinician, I study vulvar pain as an anthropologist, attending to the ways that culture shapes the emergence and the experience of symptoms. A major challenge associated with vulvar pain is that linguistic and social norms discourage most women, including symptomatic ones, from spending too much time “down there.” These tacit prohibitions can be so stifling that women’s private experiences of their genitalia are sometimes filled with an even greater sense of apprehension than are their public ones (Kaysen 2001; Reinholtz and Muehlenhard 1995). In the “Medical Mysteries” episode, ABC News adhered to this evasive storyline by repeatedly referring to the subject of their investigation with the nonspecific and gender-neutral phrase “sexual pain.” Throughout the segment—interviews with symptomatic patients, visits to specialist clinicians and researchers, and concluding tips for the viewer—the producers refrained from uttering the word vulva, undercutting both their educational and journalistic efforts. The real “mystery,” it seemed, was how a woman with this pain 144 Embodied Resistance would be any more able to describe it—to anyone—than she might have been before the show aired. Though rarely discussed, vulvar pain is fairly common. Estimated U.S. prevalence rates range from 15 to 18 percent among adult women, and a growing body of medical literature attests to the relative urgency of this condition (Goetsch 1991; Harlow and Stewart 2003, 2005; Harlow, Wise, and Stewart 2001; Leclair and Jensen 2005). Marked by such discomforts as an inability to tolerate vaginal-penile intercourse, wear pants comfortably, and sit down for longer than a few hours (Bachmann et al. 2006; Harlow and Stewart 2003), chronic vulvar pain is simultaneously characterized by an “absence of visible pathology or a specific, clinically identifiable disorder” (Goldstein and Burrows 2008). Nonexperts, who make up the bulk of providers consulted by these patients, and who can number up to five before the woman is referred to a specialty clinic, vacillate between furrowing their brows with incomprehension and prescribing ineffective (or inappropriate) medications and procedures. Expert clinicians, in contrast, spend a great deal of time guiding symptomatic women through a complex algorithm of treatment strategies—including antidepressants, surgery , and sex therapy—none of which has been proven to eliminate or “cure” vulvar pain.3 Because there is scant clinical evidence, women with genital pain have been historically misunderstood, often being told that they are just “too uptight” about sex. Many therefore come to rely on the external validation that mass media (such as a national news program) can provide.4 But in late September, about a month after I had seen the 20/20 episode, I came upon an online support group that seemed to reveal a slightly more complex picture. Though many members were grateful simply that the show had aired—evidence of the “any press is good press” philosophy that peppers the vulvar pain support literature—one woman’s voice instantly reminded me of the consternation that had colored my own experience of watching the segment. Frustrated by the producers’ linguistic evasions, she poignantly observed the paradox through which vulvar pain patients...

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