Doctors Dismissed Their Symptoms As Perimenopause, But These Women Knew It Was More
Two years ago, Katy Quinn, a 51-year-old Brooklyn, NY, actress, was diagnosed with Lyme disease—her fifth bout with it. She’d grown up in Old Lyme, CT, so she was intimately aware of the symptoms of the tick-borne disease named after the nearby town. She was put on a two-week course of antibiotics, but it wasn’t sufficient, and her symptoms worsened; she had excruciating pressure headaches, constantly dilated pupils, and a quickening heartbeat. That was when she sought out an infectious-disease specialist.
But the doctor took one look at her age and said her symptoms were likely from perimenopause. Katy was stunned. “It was scary, because untreated Lyme can be very dangerous, and it looked like she might not give me more antibiotics,” she says. Fortunately, the doctor relented, but not until Katy told her that her husband (who also had been diagnosed with Lyme) had similar symptoms—and only after Katy produced blood work from an endocrinologist showing steady hormone levels (meaning she wasn’t nearing menopause yet). Katy was placed on an antibiotic regimen that ultimately took 16 weeks to cure her.
This story is not an isolated one. “Sometimes there is a tendency to over-attribute everything to the onset of menopause,” says Nanette Santoro, M.D., chair of obstetrics and gynecology at the University of Colorado School of Medicine. Since perimenopause can last years, if your doctor seems to feel that perimenopause explains everything, she says, “you should be suspicious.”
Most simply, perimenopause is the ramp up to menopause, marked by shifting hormones (estrogen and progesterone), skipped periods, and a wide range of physical and mood-related woes. When you’re in its early stage, several menstrual cycles come a week or more later (or sometimes earlier) than usual for several months. You enter the late stage after sometimes going at least 60 days between periods, and once you’ve gone a full year without a period, you’re officially menopausal. But some women’s hormones might be all over the place while their periods remain unchanged for years, says Hadine Joffe, M.D., executive director of the Connors Center for Women’s Health and Gender Biology at Harvard’s Brigham and Women’s Hospital.
Some women start perimenopause in their mid-30s, others in their mid-50s, with 49 the average in the U.S. Women who begin the process early tend to have a longer perimenopause—up to a decade, research has shown.
Such research, though, hasn’t been extensive. In fact, in the two decades since the first major studies about perimenopause began, there have been surprisingly few studies on a condition that affects fully half the population. Enter “menopause” or “perimenopause” into the national database of research studies and you get roughly 69,000 combined entries. This may sound like a lot until you realize “heart disease” has more than a million hits. Even prostate cancer, a serious condition but not one that every man goes through, has 163,000. “Female-only conditions like menopause have long been ignored by scientists,” says Amy Miller, Ph.D., president and CEO of the nonprofit Society for Women’s Health Research in Washington, DC. “We need a larger body of research.”
The result: There’s a lot scientists still don’t know. “It’s complex,” Dr. Joffe says, “because you have the transition happening simultaneously with general aging, and it unfolds over a really long time period.” Symptoms, including feeling less energetic or putting on weight, could be from either one, or both, or something else entirely.
This can be confusing for both doctor and patient—which can lead to significant problems. Sallie Sarrel, 45, of Millburn, NJ, thought it was reasonable when her functional medicine gynecologist promised that her massive bloating, weight gain, exhaustion, and intense breast pain would disappear once she addressed perimenopause by balancing her hormones. Sallie did a year of hormone treatments, but they didn’t help. When she finally saw a new doctor and later a surgeon, she learned she had an infection, two fibroids, five hernias, and endometriosis all over her organs. After surgery, her symptoms disappeared.
Sallie’s case points to a serious issue: “Many doctors aren’t adequately taught about what symptoms might be perimenopause and what symptoms are not,” says JoAnn Pinkerton, M.D., a professor of obstetrics and gynecology at the University of Virginia Health System in Charlottesville and executive director of the North American Menopause Society (NAMS). Complicating things are the numerous oddities women experience. While most have hot flashes, sleep problems, mood issues, and, later, vaginal dryness—what experts call the “core four”—others cite experiences like a metallic taste in their mouths, thinning hair, heart palpitations, fatigue, dizziness, and even the sensation that ants are crawling under their skin. Dr. Santoro herself was frequently nauseated during her transition.
Yet this vast array of lesser-known effects is “hard to capture in the data,” Dr. Joffe notes. At some point, doctors facing patients with so many symptoms may throw up their hands and assume everything midlife women complain of springs from perimenopause. There’s also lingering reluctance to employ hormone therapy (HT), the most effective way to treat most perimenopausal complaints. HT was widely shunned after the Women’s Health Initiative’s initial report in 2002 found that it could be risky, but subsequent analyses have noted that dangers like heart disease and breast cancer are rare, and risks accrue predominantly in those who start HT long after going through menopause or use it for years.
Some observers are convinced that doctors’ dismissal of women who think something besides perimenopause is going on may have more insidious roots. “Hysteria was the diagnostic label applied over the centuries to any unexplained—including hormonal—symptoms in women,” says Maya Dusenbery, who heard story after story of this while researching her book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. While these days doctors wouldn’t use the word “hysterical,” some still think their female patients are just overstressed or hormonal rather than giving credence to their complaints, she says. What makes things worse, says Dusenbery, is that women often don’t know what is considered normal perimenopause, and still-alive taboos make some uncomfortable discussing the topic with others.
One thing is certain: When doctors leap to perimenopause, they’re putting you at risk. “Midlife is a time when women present with a lot of new and sometimes serious chronic health problems” in addition to acute ones they may develop, Dr. Joffe says.
One of the most dangerous involves the heart. “Cardiovascular disease can masquerade as many symptoms women get in perimenopause,” says Mark Menolascino, M.D., a functional medicine physician in Jackson Hole, WY, and author of Heart Solution for Women. For instance, he says, hot flashes can be a sign of an irregular heartbeat, while fatigue, especially during exercise, might indicate a partial blockage. Dr. Menolascino had a 42-year-old patient who came to him after a doctor put her on antidepressants, attributing her palpitations and anxiousness to perimenopause. While an occasional irregular heartbeat may be common in women, atrial fibrillation, a problem with the electrical circuits of the heart, is much more of a concern. When Dr. Menolascino gave the woman an EKG and a stress echocardiogram, she turned out to have a pattern suggestive of artery blockage. “You’re never wrong if you get your palpitations checked out, but you could be dead if your doctor doesn’t think you should,” Dr. Menolascino cautions.
Other serious conditions mimicking perimenopause include thyroid problems (night sweats and fatigue are common to both), autoimmune disorders (persistent pain, severe tiredness), and infections like tuberculosis (night sweats). Irregular periods could also indicate endometriosis, uterine fibroids, pituitary tumors, cancer, or even pregnancy. Bleeding in the average perimenopausal woman gets lighter, so women with suddenly heavier flows should insist on further testing, Dr. Santoro says. And skipped periods may be the hallmark of perimenopause, but not all missed periods are. “Especially if you’re younger, it’s worth getting a blood test,” Dr. Santoro says.
Having cancer mistaken for perimenopause is what happened to Patti Graves, who 12 years ago was a 48-year-old Santa Rosa, CA, middle school teacher. When her periods got heavier and were filled with odd clumps of tissue, and she began bleeding after sex, her family practitioner said this was normal perimenopause. “Patti believed him when he said she was fine, figuring he was the expert,” says her daughter-in-law, Leasa Graves. More than a year of suffering later, Patti finally went to a gynecologist, who, via an ultrasound, found a mass in her abdomen. Suffering from Stage IV uterine cancer, Patti died in less than two years.
Trust your instincts
Even if serious diseases are not missed, being unheard causes women to doubt themselves, Dusenbery says: “It’s really destabilizing to be asked to ignore your symptoms and distrust your instincts.”
Women who aren’t actually depressed may be put on antidepressants by doctors who flag their continued health concerns as anxiety, as happened to Dr. Menolascino’s patient. Taking a medication you don’t need puts you at risk for unnecessary side effects.
Attributing nothing to perimenopause can be an equally problematic error. “Doctors may be making accurate diagnoses, but not necessarily thinking fluctuating hormones might be affecting what’s going on,” Dr. Pinkerton says. With depression, for example, perimenopause can increase your risk of relapsing or of developing the condition for the first time. That’s why, last September, NAMS, along with a task force of the National Network of Depression Centers, issued new guidelines specifically for treating perimenopausal depression—listing estrogen therapy as an effective treatment for perimenopausal (but not postmenopausal) depression that also helps quell hot flashes.
Be your own advocate
“Women need to advocate for themselves when what they’re being told and what they’re experiencing don’t match,” Dr. Pinkerton says. If you suspect that your doctor doesn’t know enough about perimenopause, find one who does. You could try an endocrinologist or, on menopause.org, find doctors and nurse practitioners near you who are members of NAMS. Another option: If neither you nor your doctor is sure whether your symptoms are linked to perimenopause, she can prescribe a three-month course of hormone therapy, Dr. Santoro suggests. “It’s low-risk, and by then it’s usually clear whether the hormones are helping,” she says. If they are, you can choose to stay on the therapy. If not, your doctor should test for other conditions.
Most of all, follow your gut if you feel that your symptoms are being overtreated or pooh-poohed. This is advice Catherine Mancuso of Earlysville, VA, wishes she’d followed in her 40s, when her doctors insisted that her severe fatigue and brittle hair were linked to her early menopause. It was only when Catherine changed physicians many years later that her new doctor insisted that she see an endocrinologist and a neurologist, since her blood work showed higher estrogen levels than a woman past menopause should have. An MRI revealed a pituitary tumor. “Medication was able to shrink it because it was growing slowly, but if it had not been found, it could have gotten so much worse,” she says. Her message: Don’t worry about ditching your physician—doing so might have been what saved her life.
You Might Also Like
