As mentioned previously about half of these patients

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Unformatted text preview: en than the control group.15 For this group, clitoral surgery clearly altered clitoral function. It is, of course, impossible to say how their sexual function might have differed without surgery. This study was then expanded to include thirty-nine adult women. Twenty-eight of them were currently sexually active, but all of them reported difficulties with sexual intercourse. Nearly 80 percent of those who had had clitoral surgery reported clitoral insensitivity and inability to achieve orgasm. These researchers concluded that “Sexual function could be compromised by clitoral surgery,” and that further debate should take place on the ethics and use of clitoroplasty in intersex patients.16 Clitoroplasty may seem to be a relatively straightforward procedure, but for several reasons the outcomes are difficult to predict. In all patients, the appearance of the genitalia will change with age, so a patient’s satisfaction with the appearance of her clitoris is likely to change as well. At puberty, the appearance of pubic hair and fat deposits in the labia 140 Between XX and XY can dramatically change the look of the genitalia. And as a girl’s body changes size and shape, an enlarged clitoris may become more or less noticeable. So in spite of its popularity as a “cure” for several types of intersex children, no one can really predict the outcome of clitoroplasty on sexual function, cosmetic satisfaction, or sensation.17 Still, overall, the number of clitoroplasty patients interviewed remains rather small, so it is difficult to draw general conclusions from these few studies and personal observations. On the other hand, the Johns Hopkins studies were larger and more systematic. That does add to their credibility, but these studies are not without problems of their own. Concern About Studies of Sex Satisfaction Joel Frader is professor of Pediatrics and professor of Medical Humanities and Bioethics at Northwestern University’s Feinberg School of Medicine. He is also Head of General Academic Pediatrics. He studies intersex. According to Dr. Frader, “The trouble with those [Johns Hopkins] papers is that they surveyed, usually, by phone—not necessarily the best way to do things. And, they surveyed their own patients. For me, the issue there is the bias involved.” Dr. Frader explains, “If I’m taking care of a patient, and I want to know whether that patient is happy with my treatment of him or her, for me to call the patient up and say, ‘We’ve been looking over your chart. Would you tell me whether you think things have gone well?’ There’s a real problem having to do with the relationship between the treating team and the patient, in which patients don’t want to disappoint their doctors, especially if the patients are still going to [the doctors] for medical care.” And it isn’t just the Johns Hopkins studies that seemed flawed. Dr. Frader believes that there are just no good data out there, period—no study that believably and decisively answers questions about how kids who underwent genital normalization surgery feel about it as adults. While the Johns Hopkins studies involved a mix of people with partial or complete androgen insensitivity syndromes, complete or par- Outcomes 141 tial gonadal dysgenesis, and other unidentified causes of ambiguous genitalia, at least two other studies have examined outcomes for 46,XY people born with cloacal exstrophy—a developmental disorder that often demands reconstructive surgery simply to ensure the child’s survival. As mentioned previously, about half of these patients chose reassignment to male sex as adults; in one study, nineteen of twenty patients suffered from one or more anxiety disorders.18 This would seem to contradict the studies done at Johns Hopkins. But, according to Dr. Frader, “Hospitals like mine have exstrophy patients—all academic children’s hospitals do—but those children are a small minority of the total population of children with disorders of sex development. So, I don’t know what one can make of that.” The other potential problem with these studies is the nature of the condition itself. Cloacal exstrophy is a devastating and life-threatening disorder. Simply surviving it is a major accomplishment, and there are often other major, non-sex-related disabilities associated with the disorder. If, in addition to survival, a child can urinate nearly like other children, look a little like either sex, and lead an approximately normal life, parents and children may find little room for complaint about even major disappointments and are, thus, less likely to consider sex reassignment. And then there are the repeated surgeries required and the sheer difficulty of creating a penis-like phallus. So the motives of those who did not choose further surgeries may be many, only one of which could be their level of satisfaction with their original surgeries. Alice Dreger shares Dr. Frader’s concerns about the studies that have been done. She point...
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This document was uploaded on 02/04/2014.

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