Let's please talk about menopause

Kerry woke up most mornings drenched in sweat. She struggled to feel rested, despite sleeping most nights for nine hours. And she slogged through her days in a career she loved, fighting headaches that felt like someone had wrapped a leather band around her head—and kept pulling it tighter.

A long-distance runner, Kerry could no longer jog the 5-mile wooded loop she relied on to clear her head. Her heart seemed to race intermittently throughout the day, and muscle and joint aches made it hard to even sit on the sidelines of her son's soccer games.

Unbeknownst to Kerry (who asked not to be identified for this story) and the dozen or so doctors she saw for help, the 44-year-old was in the throes of perimenopause, the transition to menopause that can last several years and involve a seesaw of hormones that lead to a roller coaster of symptoms, from migraines and irregular menstrual cycles to chronic fatigue and depression. Menopause then occurs when a woman goes 12 consecutive months without a period. Estrogen levels drop, setting up the potential for new or evolving symptoms—and increased risks for serious health conditions like heart disease and dementia—to emerge.

Menopause happens to everyone who menstruates, assuming they live long enough, and the experience varies from woman to woman, with some noticing only mild symptoms and others suffering in ways that interfere with daily life. This variation in symptoms contributes to the stigma surrounding menopause, setting up the potential for women like Kerry to feel shame and partially blame themselves for what they go through, especially if they experience symptoms more severe or at a younger age than their friends or family.

"I do feel shame," Kerry says, "though my logical brain tells me I shouldn't feel shame, and that I'm wrong for that."

[Author's note: Kerry is not Kerry's real name. She asked to remain anonymous—and not even to disclose her amazing career—because of the stigma and shame that still surround menopause. She also hides her symptoms from close friends because they haven't started experiencing symptoms. Not yet, anyway. "If they have, they're hiding it," Kerry told me.]

Is Kerry alone?

Hardly.

For Wen Shen, an associate professor of gynecology and the director of the Women's Wellness and Healthy Aging Program at Johns Hopkins Medicine, Kerry's experience is all too common.

"I hear stories like Kerry's every day," she says. "It's unfortunate but not surprising, given that a [staggering] 75% of women in perimenopause or menopause are left untreated by their doctors.

"The stigma is alive and real."

That's partly why, in 2018, Shen and her colleague Vered Stearns, the former director and research chair of breast cancer in oncology at Johns Hopkins Medicine, founded the Women's Wellness and Healthy Aging Program, which supports all aspects of women's health, including perimenopause, menopause, and postmenopause.

"Our goal is to let women know they're not alone, that they can take steps to live more comfortably and protect their long-term health from the broad range of consequences that can ensue, from chronic pain to heart disease, breast cancer, osteoporosis, and Alzheimer's disease, when menopause is not handled properly," Shen says about the program.

On Oct. 17, the day before World Menopause Day on Oct. 18, Shen will appear in the PBS documentary The M Factor: Shredding the Silence About Menopause, to help sound the alarm about the dire need for more research on and support for women in and beyond midlife—and to debunk misinformation and stigmas surrounding this natural life phase that all women who live through midlife go through.

The M Factor is the first-ever widely publicized documentary on menopause in the United States, a reality that doesn't surprise Shen and her colleagues, given the dearth of quality resources and information available to women and even health care providers nationwide. It comes on the heels of a proposed bipartisan U.S. congressional bill, The Menopause Research and Equity Act of 2023, for the National Institutes of Health to review existing research on women at midlife—and to fund additional research to fill in knowledge gaps, "of which there are many," Shen says.

The documentary comes, too, at a time when 50 million women in the U.S. fall between ages 42 to 58, the most common age range for people to experience perimenopause and menopause. Roughly 85% say they suffer symptoms, the NIH National Library of Medicine reports, with these symptoms costing U.S. women a collective $1.8 billion in lost work time, according to a 2023 Mayo Clinic study.

Not surprisingly, these statistics and factors make menopause a potentially booming industry, estimated to value $600 billion by 2030—a finding that frightens Shen and her colleagues, given the existing knowledge gaps and likelihood that women will spend money on products and treatments that are not approved by the U.S. Food and Drug Administration.

"There's a tremendous amount to do, and we're pushing hard and fast to educate and raise awareness not just among women but also doctors and health care providers," Shen says. This includes many gynecologists, "whose training has traditionally focused on pregnancy and fertility," she explains, adding:

"Childbirth is a critical part of health care, but pregnancy lasts nine months, compared to the several decades that many women spend in and after menopause."

How we ended up here

When Shen graduated from medical school, in 1982, she knew next to nothing about menopause. It wasn't until her residency at Johns Hopkins that she started to learn about an aspect of women's health long considered taboo. "I credit a cardiologist at Johns Hopkins, Bernadine Healy, who advocated for women and went on to become the first female director of the NIH," Shen says. "In that role, she launched a major initiative to investigate and help prevent women's health conditions and the complications of menopause."

Although efforts to educate medical students and doctors about menopause have improved—Shen's own group, for instance, hosts a full slate of training and education sessions—many practicing and aspiring physicians continue to receive inadequate training. In some cases, medical students receive no menopause training at all. Why?

Image caption: Dr. Wen Shen

Image credit: Johns Hopkins Medicine

The reason is multifactorial, Shen says, but stems from the long-standing exclusion of women in clinical trials. This persisted until 1993, when Congress passed a law mandating the NIH to include both women and individuals from racial and ethnic minority groups.

"General research, say, for blood pressure medication was historically with male participants only," Shen says. "How those medications work for women and the side effects they experience were unknown, and it was just assumed that women would react the same way men reacted. That's not the case, however, because women's hormones and reproductive system make things more complicated."

Although the ban on women in clinical trials lifted three decades ago, participation still lags behind that of men, especially among women from underserved populations. This is problematic, given that women from various races and ethnicities experience menopause differently, Shen says. Existing studies show, for instance, that Black and Hispanic women tend to go through menopause earlier than white, Chinese, and Japanese women. They also experience symptoms for a longer duration—sometimes so intense they disrupt life.

But every woman is different, and exceptions exist for every finding, Shen says, "which doesn't make menopause any easier to study and treat."

Not just night sweats

Despite advancements in women's health, much of the public and medical community only know about the most common side effects of perimenopause and menopause—hot flashes, night sweats, mood swings, and the end of what earlier generations called "the curse" and "Aunt Flow."

But "the change" can affect the whole body, from the bones, muscles, and joints to the heart and brain, Shen says.

"One of the primary causes of osteoporosis [in women] is the lack of estrogen that happens in menopause," she explains. "The best support for our bone density is estrogen, and even in perimenopause, we start to lose bone mass unless we stay on top of our bone health."

Making it tricky, however, is that bone loss tends to set in without symptoms, so women don't know it's happening. This raises the risk for developing osteoporosis—and the broken and fractured bones, stooped posture, and chronic pain that accompany it—down the road.

Image credit: PBS

To prevent bone loss, Shen advises her patients to pursue strength-training and weight-bearing exercises and to consume adequate calcium and vitamin D, whether in their diet or through supplements. Hormone replacement therapy may also be needed, she says, depending on individual circumstances.

Studies have also shown that menopause can affect women's hearts, leaving them susceptible to cardiovascular disease. Estrogen and progesterone receptors exist on the heart and all over the vascular tree. Over time, the lack of estrogen can cause atherosclerotic plaque to develop, "which takes a toll on cardiac function," Shen says. "That's why most women don't have heart attacks until around age 65—estrogen appears to play a protective role. This differs from men, who start in their 50s.

"Given that heart disease kills more women ages 65 and older than any other condition, even breast cancer and all cancers added together, we can't afford to overlook this serious consequence."

With the brain, research has long shown that the drop in estrogen can lead to brain fog and memory problems reported by an untold number of women, including celebrities like Gwyneth Paltrow and Oprah Winfrey, who said she felt like a "veil had been lifted" when she started estrogen supplementation. But recent studies also link it with Alzheimer's disease, the main cause of dementia, suggesting that estrogen may protect not just the heart but also the brain.

"More research is needed on how estrogen and other hormones affect women's brains and long-term health," Shen says. But one thing is certain: Hormones contribute to how women age, and for some in menopause, supplementation may be the way to go.

Understanding estrogen and HRT

When The M Factor airs on Oct. 17, the documentary will position menopause as a public health crisis. World-renowned experts and everyday women will share information and stories about treatment options, along with the tendency of even top doctors to dismiss symptoms and say things like, "Maybe go to bed earlier," or "Worrying about it only makes it worse."

A topic explored throughout The M Factor is the long-standing controversy surrounding hormone replacement therapy, or HRT, which Shen says stems in part from misinformation surrounding a large, randomized NIH study, the Women's Health Initiative—a major research program that Shen's role model, Bernadine Healy, coincidentally helped launch.

What happened?

The study set out to determine whether HRT during menopause raises women's risk for cardiovascular disease, breast cancer, and other life-threatening ailments. In 2000, researchers saw signs that HRT does, in fact, increase risks—a finding that prompted NIH to halt part of the study and alert the media. The news spread like wildfire, with articles appearing in every major newspaper and waves of panic rippling around the world.

"The story was blown out of the water," Shen says. "As a result, practitioners stopped prescribing and told their patients to stop the only treatment in town back then, an oral medication made up of conjugated equine estrogen and medroxyprogesterone."

All this happened, Shen adds, before the study's scientists had a chance to parse and explain their findings—and before later analyses showed the protective role HRT can play in women's health over the long term. But the damage was done already, with doctors and an entire generation of women washing their hands of HRT.

Today, Shen considers HRT one of the most common and effective treatments for many women in menopause. But she says the fear of HRT lingers, despite options evolving over the years to include safer options.

"Right now, the primary forms of hormone therapy are transdermal 17 beta estradiol available in various skin patches, skin gels, and vaginal creams," Shen says. "These options provide estrogen (or estradiol) in the activated form, which doesn't require metabolization by the liver and doesn't increase a woman's risk for having a heart attack or stroke or developing blood clots in the lungs and veins."

Similarly, the progesterone used in HRT today differs from the earlier version. Shen explains: "It's natural and does not increase breast gland proliferation, inflammatory markers, and cholesterol levels, which were possible side effects of the synthetic version used earlier."

What women need

For Shen, the list of what women need at midlife is long. "Nowadays, women juggle so much," she remarks. "They have to work at high levels at their jobs and then go home to work at high levels taking care of the family, the house, aging parents, and the husband or partner."

As The M Factor will demonstrate, the go-go lifestyle can take a toll, especially when coupled with health care providers who tell women it's all in their heads or to go home and take a hot bath.

"What's important is that every patient is heard and given options, instead of being told what to do or hearing [the same tired line] that 'Every woman goes through menopause—just deal with it,'" Shen says. "This still happens. My patients tell me about it."

An interdisciplinary approach is also necessary in many cases. At the Women's Wellness and Healthy Aging Program, Shen partners with internal medicine physicians and specialists ranging from cardiologists and neurologists to psychiatrists and endocrinologists. These specialists understand the complexities, including how menopause and hormone fluctuations affect existing conditions like multiple sclerosis, rheumatoid arthritis, diabetes, depression, and anxiety.

Additionally, Shen and her colleagues developed an app that doctors and providers use to pinpoint whether menopause may be the culprit. "The app lists more than 30 symptoms, including those not typically associated with menopause, such as burning mouth syndrome," says Kate Pisano, program coordinator and patient navigator for the Women's Wellness and Healthy Aging Program.

Shen has seen the whole gamut and is never surprised to see a hormonal role in health, given that hormones and health overlap and intertwine, she says.

"Women come to me saying they've been passed from doctor to doctor and are still struggling, sometimes in severe ways," Shen says. "Many doctors can't address the level of complexity it takes to tackle menopause in the 15-minute appointment allotted by our country's health care and insurance system."

This was the case with Johanna Kushan, an emergency room nurse and mom of teenagers who made an appointment with Shen after being passed from one provider to another, with no relief in sight.

"I went from being an energetic person to feeling so exhausted and depressed that practically all I could do was sit and stare at a wall," says Kushan, who feels comfortable sharing her story openly, despite the stigma. "That's not how I wanted to spend what was supposed to be my prime time in life."

Kushan started Googling, learning that her symptoms, which included a waning libido, weight gain, and muscle and joint aches, might be linked to menopause. She presented her ideas to her primary care doctor, who told her point blank that she didn't dabble in menopause care—that she needed "to stay in her lane"—and then referred Kushan to a wellness clinic offering hormone pellet therapy, a form of HRT inserted under the skin.

She opted not to undergo pellet therapy since it isn't approved by the FDA, and she'd have to pay out-of-pocket. After spending months in despair, questioning whether her symptoms were figments of her imagination, she learned about Shen from a friend and made an appointment.

"At that first appointment, she validated everything I'd gone through and started me on the right course of HRT, saying we could make tweaks as needed," Kushan says about Shen. "It made all the difference."

Now, without hot flashes and nagging pain, Kushan has her life back, taking road trips, spending time with family and friends, and continuing to grow as an ER nurse so she can be there for the people who come to the hospital in a crisis.

"I work with so many women, and it's astounding that we know so little about menopause," Kushan says from her car one day, reflecting on her experience. "We learn about and teach our kids about puberty. Why don't we learn about menopause? It feels like a sham."

Shen agrees that education and awareness are critical to turning the tide on menopause. "Women need information to make decisions," Shen says, adding that she applauds Kushan's willingness to talk openly about her experiences—and her decision to do the same with her kids—at a time when the menopause stigma still stings.

"I came home from my appointment with Dr. Shen to my inquisitive 16-year-old daughter, who's been right there beside me on this journey, asking questions, learning about the female bod—telling me to—," Kushan trails off.

Her words sound muffled and far away, as though she's driving through a wind tunnel. But it's her cell service puttering in and out. I tell her that we can talk later, but for now, she should just enjoy her getaway.

After all, she's on a road trip with a friend, curving along the backroads of the Pennsylvania countryside.

On Nov. 23, Wen Shen will deliver an address, "Perimenopause: A Much Misunderstood Condition," at the 2024 A Woman's Journey event at the Baltimore Marriott Waterfront Hotel.