Feb. 6, 2002 -- Psychologist Elizabeth Slater never associated the gynecological problems that have plagued her as an adult with the controversial therapy she received as a child. The light went on, she says, when she saw the ad in the Boston Globe searching for "tall girls."
At the age of 9, Slater, who was then 5'2", was treated with high doses of estrogen in an effort to keep her from growing. The practice, known as growth suppression therapy, was introduced in the 1950s. It was routinely used in the '60s and '70s to keep tall young girls from growing taller, in much the same way that growth hormones were used indiscriminately in young boys who were considered too short.
While ethical concerns about treating children with hormones in an effort to manipulate their height have slowed the practice, a surprisingly large number of pediatric endocrinologists (doctors who specialize in treating hormonal problems) still offer it, a new study finds. A third of those surveyed said they had discussed the therapy with patients, even though there have been no studies evaluating its long-term consequences.
Slater now says she believes that in her case those consequences included two major surgeries to remove ovarian cysts, early menopause, infertility, and endometrial cancer.
"I was actually relieved when I saw the Globe ad looking for women who had had this treatment," she tells WebMD. "I realized that there might be a reason for all of this happening to me. It wasn't that I was defective in some way."
The ad and the survey were the work of the Physicians Committee for Responsible Medicine, a nonprofit group promoting preventative medicine and medical ethics based in Washington, D.C. Founder Neal D. Barnard, MD, says he was surprised to find that so many growth specialists offer the controversial therapy.
Of 411 pediatric endocrinologists surveyed around the United States, 33% said they still offer estrogen treatments to suppress growth, although only four had treated more than five young girls over the preceding five years. The findings were reported in the February issue of the Journal of Pediatric andAdolescent Gynecology.
"We not only don't know what the long-term consequences of this treatment are, we really don't know if it works," Barnard tells WebMD. "Studies on the actual height suppression from this treatment suggest that the effect is anywhere from nothing to 2½ inches. Does this type of suppression really make a difference in the psychological outcome?"
Barnard's group is now petitioning the Food and Drug Administration to require manufacturers to include a warning on their product insert stating that estrogen has not been approved for growth suppression therapy and that the long-term safety has not been established when given to children. He acknowledges that the goal of such a warning is to scare clinicians away from offering the therapy.
Pediatric endocrinologist Edward Reiter, MD, says despite the survey findings, very few of his colleagues are treating young girls with estrogen. Reiter is past president of the Lawson Wilkins Pediatric Endocrine Society and is chairman of pediatrics at Baystate Medical Center Children's Hospital in Massachusetts.
"In my practice we may have two or three referrals from pediatricians each year over this issue, and we have treated one girl in the past 23 years," he tells WebMD. "And we have a very large practice. That is a dramatic difference from, say, three or four decades ago when, for whatever societal reasons, young girls sought help from pediatric endocrinologists over tall stature and were treated."
Reiter credits changes in cultural mores with helping to destigmatize tallness among young girls and women.
"It may be that so many more young girls now play sports, where being tall is often considered an asset, he says. "Or it may be that parents are doing a better job of helping their daughters accept who they are."
He says he agrees with Barnard that studies into the long-term effects of growth suppression therapy are needed. Studies in adults suggest that long-term estrogen therapy increases the risk of uterine and breast cancer.
Slater says such studies are desperately needed if endocrinologists are going to continue giving the treatment to children.
"Right now nobody, including the doctors who are giving it, know what the long-term impact of this therapy is," she says. "I think if you told parents that they might be mortgaging their daughter's reproductive future or her health, I don't thing many would do this."