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Appendix B
Long Term Outcomes of Feminizing Genital Surgery are Unknown
These surgeries have been widely practiced since the late 1950s. During that time there has been a disturbing lack of follow-up. Because it is not known whether these surgeries enhance psychological well-being, which is their sole legitimate purpose, these surgeries must be considered experimental.
In her forthcoming review of feminizing genital surgeries, pediatric urological surgeon Dr. Justine Schober notes that, "The psychosocial long-term outcomes represent the most necessary information to determine if we are successful in treating intersexual patients. However, in conditions other than congenital adrenal hyperplasia, outcomes are generally unavailable" (Schober 1998, p20).
In a forthcoming book, Dr. Suzanne Kessler, professor of Psychology at the State University of New York at Purchase, presents results from her ten year investigation of medical management of intersexuality. She notes that "Surprisingly, in spite of the thousands of genital operations performed every year, there are no meta-analyses from within the medical community on levels of success." "Even recent reports are susceptible to a criticism about vagueness: The clitoroplasty is a `relatively simple procedure that gave very good cosmetic results . . . and quite satisfactory results.' The reader searches in vain for any assessment by which that was determined." "In none of the follow-up studies is there any indication that a criterion for success includes the intersexed adult's reflection on his or her surgery" (Kessler 1998 forthcoming, p106-7).
Dr. William Reiner, who switched in mid-career from urological surgeon to pediatric psychiatrist, notes that "Past decisions about gender identity and sex reassignment when genitalia are greatly abnormal have by necessity occurred in a relative vacuum because of inadequate scientific data" (Reiner 1997a, p224).
Brown University Professor of Medicine Dr. Anne Fausto-Sterling, in her review of every case study located (in English, French, and German) on feminizing genital surgeries from the 1950s through 1994, concludes that "these standard treatment procedures are not based in careful clinical analysis"(Fausto-Sterling and Laurent 1994, p1).
"Long term results of operations that eliminate erectile tissue [that is, clitoral reduction surgery] are yet to be systematically evaluated" (Newman, Randolph, and Parson 1992).
Pediatric urologist Dr. David Thomas of the University of Leeds, addressing the American Academy of Pediatrics in late 1996, noted that very few studies have been done to gauge the long-term results of early feminizing surgery, and the psychological issues "are poorly researched and understood" (1997a).
Hopkins Pediatric urological surgeon Robert Jeffs, reacting to picketers demonstrating against early genital surgeries at a 1996 Boston meeting of the American Academy of Pediatrics, conceded to a journalist that he has no way of knowing what happens to patients after he performs surgery on them. "Whether they are silent and happy or silent and unhappy, I don't know" (Barry 1996).
"Although these procedures have been performed for decades, no controlled studies have compared the adaptations of children who had surgery to those who did not. Anecdotal reports [that is, reports of former patients including intersex activists] carry much weight in an area in which data on long-term outcomes are sparse" (Drescher 1997).
The very fact that, in the current case, physicians hesitate to proceed without the approval of the Court, is evidence that they consider the procedure risky and likely to motivate the patient to later litigation.
Appendix C
Feminizing Genital Surgery Can Cause Harm
There is a wealth of evidence that these surgeries can cause profound physical and emotional harm.
See the attached Declaration of Lisset Barcellos Cardenas, which describes reduced sexual sensation, chronic irritation and bleeding, and abnormal appearance after cosmetic genital surgery imposed without her consent in Lima Peru in approximately 1981. Ms. Barcellos would be happy to address the Court, in her native Spanish, on the ways in which surgery has decreased her quality of life and her belief that these surgeries should never be imposed on unconsenting children.
Dr. Anne Fausto-Sterling documents scarring, pain, multiple surgeries, and patient or parental refusal of additional surgeries as evidence that surgery does actual harm (Fausto-Sterling and Laurent 1994,p5).
In a recent review of a dozen girls aged 11 to 15 who had undergone clitoroplasty and vaginoplasty, Dr. David Thomas concluded "The results are indifferent and, frankly, disappointing" with reconstructions showing visibly different appearance from the original cosmetic result, clitorises withered and obviously nonfunctional, and "every girl required some additional vaginal surgery"(1997a).
Angela Moreno, who was subjected to modern clitoroplasty by experienced surgeons in 1985, recounts that the surgery destroyed her orgasmic function (Chase 1997, p12).
"Surgical reduction of an enlarged clitoris can at times damage sensation and thus reduce orgasmic potential and genital pleasure and, like ablation of the testes, is irreversible" (Reiner 1997b, p1045).
"Aside from reducing potential adult genital sensitivity, [clitoral reductions] neglect the significance of any behavioral or psychological predisposition toward the individual's own preferred sexual identity or gender roles" (Diamond 1996, p143).
Sex therapist Dr. H. Martin Malin discusses patients who had been subjected to early genital surgeries. "[their conditions, such as micropenis or clitoral hypertrophy] were not life-threatening or seriously debilitating. . . . [T]hey were told that they had vaginoplasties or clitorectomies because of the serious psychological consequences they would have suffered if surgery had not been done. But the surgeries had been performed and they were reporting long-standing psychological distress" quoted in (Schober 1998).
"[S]urgery not only risked problems in psychological adjustment, but also can permanently damage the individual's ability to achieve orgasmic sexual function. This damage may be something a patient is willing to risk, but that is a choice he/she should be able to make for him/herself" (Fausto-Sterling and Laurent 1994, p10).
Hopkins surgeons Oesterling, Gearhart, et al have recently acknowledged in the Journal of Urology that the most modern clitoral surgery "does not guarantee normal adult sexual function" (Chase 1996).
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