Fallout from hormone study

Denny Henry / for msnbc.com

Ingrid Gorman, a 48-year-old senior vice president at Discovery Communications, said she never discussed menopause with her mother, but wants to now that she’s approaching that age. “I don’t even remember discussing menstruation with her when I was little,” she said.

By Maggie Fox

When her aunt died of breast cancer, Mari-Anne Pisarri had no doubts about what caused it. She was certain it was estrogen pills. “So when the Women’s Health Initiative released their findings, I thought, ‘Well, of course, Aunt Betty could have told them that years ago’,” said Pisarri, a 56-year-old partner at a Washington, D.C. law firm.

Pisarri is one of tens of millions of U.S women who have no intention of taking hormone replacement therapy to ease the symptoms of menopause. “I am just not willing to take the risk,” she said.

Like so many women in the 1970s, 1980s and 1990s, Pisarri’s aunt got estrogen as a matter of course when she entered menopause. Doctors routinely prescribed hormones in the belief that HRT prevented heart disease, cancer and the bone-thinning disease osteoporosis.

The federal government decided to check out these assumptions, and commissioned the Women’s Health Initiative – a giant study of 161,000 women. In 2002, regulators stopped the study when it became startlingly clear that HRT did not lower the risk of heart disease or cancer in the women taking part in the study. In fact, it raised the risk of stroke, heart attacks and breast cancer, they reported in a paper published 10 years ago Monday in the Journal of the American Medical Association.

Women stopped taking the pills in droves. While as many as 17 million women used HRT in 2001, by 2009 just about 8 million did. A decade after the Women’s Health Initiative report was released, women are still confused and so are many doctors.

It would be impossible to say for sure that Pisarri’s aunt got cancer because she took HRT. But the giant drug company Pfizer said last month it has paid $896 million so far to settle lawsuits alleging the pills made women sick without warning them of the risks. Pfizer owns Wyeth, the company that made the most popular HRT drugs Premarin and Prempro.

Swinging pendulum
Dr. JoAnn Manson, a professor at Harvard Medical School and Brigham and Women’s Hospital in Boston who helped conduct the study, says people overreacted to its findings. “The pendulum has swung from ‘hormone therapy is good for all women’ to ‘hormone therapy is bad for all women’ after the Women’s Health Initiative,” Manson said in a telephone interview. “What the WHI showed us is that hormone therapy is appropriate for some, but not all, women.”

The problem was that doctors were in the habit of prescribing HRT to protect women’s health, instead of treating it as any other drug that should be used only when the benefits outweigh the risks. “At the time the WHI began in the early 1990s it was becoming an increasingly common practice for hormone therapy to be prescribed for women who were in their 70s and 80s and women at very high risk of cardiovascular disease,” Manson says. The study made it clear just how misguided this was. “Those practices came to a screeching halt,” Manson said.

But the younger women who could more safely take HRT became afraid to ask for it and, often, their doctors were afraid to prescribe it. This has made for a perfect storm for women in their 40s and 50s who are often approaching the peak of their careers and have more flexibility since their children are grown. Then menopause hits, with no easy answer to managing the symptoms.

“I do have trouble sleeping,” says Bev, a 54-year-old neuroscientist living in Silver Spring, Maryland, who asked for her last name to be withheld because she was discussing personal health. “But I don’t really know what to do about that. I tried exercising more to try and wear myself out. I don’t even know if it’s actually a sign of menopause or perimenopause.”

Bev says her hands also ache worse lately -– she fears arthritis is setting in — but is not sure if menopause or the lack of sleep is a factor. “I’ve had some symptoms, like mainly hot flashes, but they’ve been minimal,” Bev says. “If I was having more severe symptoms I would probably be checking into it more.”

While Bev doesn’t fear discrimination at work, she, like many women, cringe at the thought of describing their symptoms publicly – and sometimes even with their own doctors. As a result, they may miss the chance to be educated. “I feel pretty ill-informed now about the whole issue,” Bev admits.

Part of this lack of information is because drugmakers have, for obvious reasons, stopped advertising HRT. But menopause is itself often a taboo subject that involves not only women’s reproductive health but also another subject that U.S. society finds embarrassing – aging.

Stultifying silence
Ingrid Gorman, a senior vice president at Discovery Communications, wonders if women fear a return to the arguments that they are untrustworthy in the workplace because they are ruled by their hormones. Remember premenstrual syndrome?

“It used to be when I was growing up … PMS (was) talked about all the time. You would blame a lot of women’s moods on that,” says Gorman, 48.

“I don’t really hear it talked about any more,” she added. “I wonder if it’s because these are different generations, or if as a group we really didn’t want that to be something that people could use against us. … We just don’t want to call that out about ourselves.”

Rachel Pentlarge, a 48-year university grant manager in Washington, D.C., says a little wishful thinking may be going on. “We are all hoping that menopause will never hit us, or that no one will notice,” she says.

“There is so much discomfort with women’s health issues and also with aging — and the way that sexism and age discrimination come together on this. The silence is stultifying.”

Pisarri is more hopeful about why menopause isn’t a big point of discussion. “It’s a benefit of being in the baby boomer generation. There are just too many menopausal women. Have there ever been this many hot flashes going on at the same time?” she asked. “When there are so many of us doing the same thing … I don’t think it is something that is quite unusual.”

But now, thanks to the publicity surrounding the WHI, women often think they must tough it out, even as they joke about hot flashes with friends and even with colleagues.

Hormone therapy study: Confusion, mistakes and fear

 “About 15 to 20 percent of women have significant symptoms that interfere with sleep and can impair quality of life and that certainly can have adverse effects in the workplace as well,” Manson says. These include problems sleeping, hot flashes and vaginal dryness. For these women, the benefits of HRT can outweigh the risks.

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There are new formulations of HRT as well, which give far lower doses of hormones than the pills used in the WHI study. Women can use ultra-low-dose skin patches and creams and they can use targeted delivery systems such as vaginal inserts to address their particular symptoms.

Other studies done since the WHI have also shed more light on who might be harmed by HRT. Manson worked on one that showed if women take HRT when they first begin menopause, they significantly lower their risk of heart disease.  And Manson points out that even doubling a very small risk, such as the risk of stroke, still leaves a woman with a very small risk.

The answer, as with so many health issues, is for women to talk to their doctors.

Doctors often determine whether a woman is going through menopause based on symptoms, such as whether she’s stopped having a menstrual period, but in some cases, may do blood tests to measure hormone levels. Some of the women interviewed for this story said they were still taking birth control pills and weren’t sure if that was masking other symptoms.

Physicians need to be more open to talking about menopause with women, said Manson, who is president of the North American Menopause Society. “Not just gynecologists but internal medicine (specialists) and family practice (physicians) often have to be discussing these issues with women,” she said. “I think it has been confusing for clinicians and, unfortunately, many clinicians have stopped prescribing hormone therapy. It is a very, very difficult situation for women who have menopausal symptoms and are trying to find a clinician who can help them make an informed decision.”

NAMS has a website at www.menopause.org that can help, Manson says.

When the time comes, Pentlarge says, she trusts her gynecologist to help her make the right decision. “So much unnecessary and totally avoidable anxiety is attached to menopause that if you can figure out a way to feel positive about yourself, it could be a much less traumatic experience,” she says.

More from Vitals:

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Stress is harder on women’s hearts

Video: Dr. Nancy Snyderman’s menopause survival guide

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