April 11, 2003 -- It's a delicate and controversial question: If a baby is born with ambiguous genitalia -- a micropenis or excess clitoral tissue -- how should the child be raised? Should the infant have surgery to feminize the appearance of the genitals?
A new study suggests that, in cases of ambiguous genitalia, feminizing the child with clitoral surgery may lead to a lifetime of sexual problems.
In fact, "sexual function could be compromised by clitoral surgery," writes lead researcher Catherine Minto, MD, with University College London Hospitals NHS Trust in London. Her study appears in the current issue of The Lancet.
An estimated one in 2000 babies is born with ambiguous genitalia -- abnormally developed genitalia, writes Minto. It is also referred to an "intersex condition." The custom in western countries is to raise the child female, and to surgically remove "excess tissue" -- whether it's a small penis or clitoral tissue. The surgery feminizes the genitals' appearance -- and has long been thought to provide better psychological outcome for the child. The child is then raised as a female.
In her study, Minto identified 39 adults who had been born with ambiguous genitalia and who were living as females. They completed questionnaires, providing information on sexual function -- frequency of intercourse, degree of satisfaction, avoidance, sensuality, vaginal penetration, and orgasm.
Of the 39 adults in her study, 28 women had been sexually active -- and all had sexual difficulties, whether or not they had clitoral surgery. Every one of the 18 women who had undergone clitoral surgery had higher rates of non-sensuality -- a lack of enjoyment in being caressed and in caressing their partner's body -- than those who didn't have surgery; 39% of those who had clitoral surgery were unable to achieve orgasm.
Clitoral surgery has advanced in many ways, but new techniques didn't seem to produce better results in this small study. The surgery could damage important nerves that affect sexual functioning in adulthood, Minto says. But two of the three women that had a new, more-refined nerve-sparing version of the procedure had the worst possible scores for orgasm difficulties, she reports. The women in this study had their surgery from eight to 40 years ago.
The women's sexual functioning could be hindered by shyness -- or by behavior problems related to the gender in which she was raised, writes Froukje M E Slijper, MD, of Erasmus MC/Sophia Children's Hospital in Rotterdam, in an accompanying editorial.
"Most women born with ambiguous genitalia are masculine in behavior," writes Slijper. "Masculine gender behavior in childhood excludes such women from the social world of their sexmates. In adolescence and adulthood, this behavior can continue and lead to problems in making sexual contacts."
Girls should be counseled before adolescence about their condition, since hormone replacement therapy and vaginal surgery should start at that age, Slijper states.
"[Ambiguous genitalia] is a hotly debated topic, and everybody wants answers," Iraj Rezvani, MD, chief of pediatric endocrinology at Temple University School of Medicine in Philadelphia. He spoke with WebMD about intersex conditions.
"When an infant is born with ambiguous genitalia, everyone is caught off guard -- family, doctors," says Rezvani. "You really feel the family's pain. You want to make it easy for the family. In the past, the idea was that gender relates to how the child is raised. If I tell you from the beginning that you are a boy -- if I can fix [your genitalia], make you into a boy -- then you would grow up like a boy. That ended up to be wrong."
Today, feminizing an infant is not the automatic default, he tells WebMD. "We have come away from that completely. We've learned in recent years that gender identity is much more complex than once thought," he says.
There are several possible diagnoses for ambiguous genitalia, and the diagnosis is very important, he says. "When an infant has complete androgen insensitivity, the genitalia are usually not very ambiguous. We cannot raise them in any way other than female."
However, another fairly common diagnosis is congenital adrenal hyperplasia, which means the fetus was exposed to male hormones (androgen) in utero -- yet tissue exists for both the female and male sex, he says.
"We believe in doing the least intervention, because the minute you touch those tissues, you can create problems," he tells WebMD. "We wait and see how things evolve. We can always go back and correct it at puberty, when the child can make the decision.... The feeling now is that you should raise the child as their geneticsex as much as possible -- whether they have XX or XY chromosomes. In rare cases, that, too, is complicated. But that's when we have to do a lot of thinking. "
He's been practicing for 30 years, and has never heard a complaint from an intersex adult, says Rezvani. "Even people who had clitoral surgery in the old days, I have had not one call -- no one saying they have had problems. And these days, people are always looking for people to blame."
Does this mean that people who are born with ambiguous genitalia will never have gender problems? "Of course not," says Rezvani. "If I sent this questionnaire to the 'normal' population, how many would have problems? All sorts of people have gender problems."
Minto's study involves an extremely small number of patients, and really does not prove anything, he says. "These were people who were just waiting for people to ask about their problems. I find it hard to believe that every one who had the clitoral surgery ended up with a lifetime of problems."