Seventy-four-year-old Marilyn Bayer had been taking estrogen for almost 20 years when the Women's Health Initiative trial was abruptly halted three years ago.
The study was stopped because it found that hormone therapy did not prevent heart disease in older women. The study also showed an increased risk of strokes, blood clots, and breast cancer.
Bayer says she stopped hormone therapy "cold turkey" on the advice of her doctor following the publication of the study's initial results. But even though she was decades past menopause, her menopausal symptoms returned with a vengeance and they did not go away with time.
"The hot flashes were bothersome, but it was the night sweats and insomnia that really drove me crazy," she tells WebMD. "Suddenly, I had a hard time going to sleep and I couldn't stay asleep very long."
The Worcester, Mass., woman had had enough when her doctor put her back on estrogen last year, although at a much lower dosage than she had been on before.
The low-dose hormone therapy seems to be helping, but she is still troubled by the menopausal symptoms that she had hoped would by now be a distant memory.
"I thought that going off hormones wouldn't be that big of a deal for me, because I was past 70," she says. "But both my mother and grandmother had hot flashes until the day they died."
Read Web MD's "Get the Facts about Hormone Therapy."
It seems that Bayer's story is not that unusual. Although exact figures are hard to pin down, it is believed that millions of middle-aged and elderly women stopped hormone therapy soon after the WHI findings made headlines in July 2002.
Wulf Utian, MD, PhD, tells WebMD that he believes about a third of them later went back on some form of hormones -- usually lower doses than they were previously taking -- because their hot flashes and other symptoms returned. Utian is president of the North American Menopause Society and is a professor of gynecology at Cleveland's Case Western Reserve University.
"I saw so many patients who were at wit's end when they stopped hormone therapy," he tells WebMD. "They were absolutely desperate."
A 2003 survey of women who stopped taking hormones following the halting of the WHI trial found that a quarter ended up back on the therapy due to a return of bothersome symptoms.
Women who had had hysterectomies or had been on hormone therapy for many years were the most likely to go back on the treatment, as were women who originally began taking hormones for hot flashes and other menopausal symptoms.
The researchers concluded that approximately 30 percent of women who stop taking hormones develop "bothersome symptoms that might persist."
Read Web MD's "A Fresh Look at Hormone Therapy."
Blanche Turner, who will be 70 this year, was even more surprised than Bayer when she developed severe hot flashes and night sweats after stopping hormone therapy. That is because she had no symptoms when she started the treatment.
"Menopause was a breeze for me," she tells WebMD. "I had no symptoms whatsoever when I entered menopause and only a few noticeable symptoms later on."
Turner began hormone therapy when she was recruited for the WHI trial at age 60. Many postmenopausal women like her were included in the study, which was designed to determine if hormone therapy could help prevent heart disease, osteoporosis, and other conditions related to aging.
Linda Churchill, who is project coordinator for the WHI trial in Worcester, Mass., tells WebMD that it was common for older women who had no menopausal symptoms when they started the treatment to have them when they stopped it.
"It is like the clock was pushed back for them," she says. "We found that it usually took about six months for women to stop having hot flashes and other symptoms when they came off hormone therapy, but some women kept having them."
Surprisingly, a large percentage of the WHI participants who didn't even take hormones, but had instead taken a placebo pill, also developed some troubling symptoms when they stopped treatment.
Read Web MD's "Get Tips for Managing Hot Flashes."
Is It Menopause?
The finding in a new study that 40 percent of placebo users had moderate to severe menopausal symptoms raises questions about the basis of some of these symptoms, says researcher Diana Petitti, MD, of Kaiser Permanente Southern California.
"Which of these are true consequences of cessation of estrogen production by the ovary?" Petitti wrote in an editorial, published in the July 13 issue of The Journal of the American Medical Association.
An expert panel convened by the National Institutes of Health recently concluded that many symptoms commonly attributed to menopause probably have nothing to do with ovarian aging. They include mood swings and depression, anxiety and irritability, forgetfulness and other cognitive problems, tiredness, and joint stiffness.
Petitti tells WebMD that a better understanding of female aging is needed to effectively treat its symptoms.
She says hormone therapy may be an appropriate choice for some menopause-related symptoms, such as hot flashes, night sweats, and vaginal dryness, but it is not the only choice.
"If we really understood what is happening as women age instead of blaming it all on menopause, women would be much better off," she says. "Clearly, there is much more going on."
Web Quiz: Test Your Menopause Smarts
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SOURCES: Wulf Utian, MD, PhD, president and founder, North American Menopause Society; professor of gynecology, Case Western Reserve University, Cleveland. Grady, D. Obstetrics and Gynecology, December 2003. Petitti, D.B. The Journal of the American Medical Association, July 13, 2005; vol 294: pp 245-246. Diana B. Petitti, MD, department of research and evaluation. Kaiser Permanente Southern California, Pasadena. Marilyn Bayer, Worcester, Mass. Blanche Turner, Mansfield Center, Conn. NIH panel report on menopause, March 2005.