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Suffering in silence: Why perimenopause is so difficult to understand

One of the major barriers to diagnosing perimenopause is that the term itself is really vague — and that leads to a lot of problems around how we talk about it.
“Perimenopause is something I believe that physicians, even OB-GYNs aren’t comfortable discussing on the whole,” a physician explained. TODAY illustration / Getty images

Heather Corinna, a 51-year-old resident of Chicago, ended up with a $10,000 medical bill after an emergency room visit several years ago. Corinna, who identifies as nonbinary, thought they might have been having a heart attack. What they were experiencing wasn’t a heart attack but a hot flash — a big one.

“In the medical community, so few people have training for this,” they said. “I was given a whole bunch of tests that I probably didn’t need because no one said, ‘you’re in your 40s, you have a uterus — have you considered this is what could be happening?’”

In hindsight, Corinna, author of "What Fresh Hell Is This?: Perimenopause, Menopause, Other Indignities, and You," added up all the symptoms they’d been experiencing up until that diagnosis and it all made sense. According to the American College of Obstetricians and Gynecologists, perimenopause is the time span leading up to menopause, marked by changes in menstrual cycles, sleep problems, vaginal dryness, and hot flashes. Dr. Nicole E. Williams, a gynecological surgeon at The Gynecology Institute of Chicago, said some of the early perimenopause symptoms mimic a myriad of other common health issues.

“Perimenopause is something I believe that physicians, even OB-GYNs aren’t comfortable discussing on the whole,” she said. “Symptoms start as early as in your 30s. Pair that with the fact that the most common perimenopausal symptom is irregular periods — it's easy for a physician or even a patient to overlook or ignore them, attributing this normal physiologic change to stress, diet, or some other reason.”

Another big perimenopausal symptom Williams sees in her patients is night sweats and even depressive symptoms just before their period. Such symptoms can start to occur years before actual menopause takes place, she said.

The symptoms of perimenopause aren't one-size-fits-all

When we think menopause, we think hot flashes. The transition to menopause is also marked by these sudden and intense feelings of heat all over the body, but slightly less commonly. The actual symptoms of perimenopause vary wildly.

Jill Leonard, 52, of Vancouver, Canada, said her perimenopause symptoms actually looked like rarer and more serious health concerns. “My hair loss could have been the sign of hypothyroidism, but bleeding after sex could have heralded anything from uterine polyps to cancer,” she said.

One of the major barriers to diagnosing perimenopause is that the term itself is really vague, and that leads to a lot of problems about how we talk about perimenopause as well as the symptoms, said Los Angeles based gynecologist Dr. Sarah Yamaguchi. “The term is used to cover the hormonal changes that women go through as they get close to stopping their periods. There is no strict definition of perimenopause as far as symptoms,” she said. “Many women attribute any change in their health in their 40s to perimenopause, but that is not always the case.”

Because it’s a gradual process, there’s no single test to help diagnose the onset of perimenopause, according to the Mayo Clinic.

“Most of the time, when we're in it, we can't figure out how long we actually have been because it's not really one of those things where you can get a test for it or where there's a specific end,” said Corinna. ”I've probably been in perimenopause for somewhere in the neighborhood of seven to nine years at this point.”

Even that is hard to track. The Office on Women's Health at the U.S. Department of Health and Human Services defines perimenopause as a transition to menopause or the time leading up to the last period.

Treating the symptoms of perimenopause

Doctors agree all symptoms that affect daily life are worth treating. “Often, we overlook or downplay symptoms such as irregular periods or PMS, chalking it up to normal shifts. While it may be normal, if symptoms persist or affect a woman's life, it's important to consider that as these symptoms can and should be addressed,” said Williams.

Yamaguchi notes that treatment of symptoms depends on what they are. “The treatments range from simple over the counter lubricant for vaginal dryness all the way to hormone supplementation,” she said. “Common symptoms are changes in their period, vaginal dryness and hot flashes, but women can also experience a change in their moods, decreased libido, headaches, weight changes, insomnia and many other things.”

Differences in race and gender present challenges

Race and gender differences also present challenges to how we talk about perimenopause. According to a 2019 study in the journal of Clinical Obstetrics and Gynecology, up to 80% of women experience vasomotor symptoms, or hot flashes and night sweats, during perimenopause. Black women, however, experience them for an average of 10 years before menopause, compared to about six years for white women. Yamaguchi recommends discussing these symptoms with a gynecologist. Doctors can prescribe medication to help reduce hot flashes.

There’s also the overlooked symptom that particularly affects trans and nonbinary people experiencing the transition to menopause: dysphoria. Gender dysphoria, or the psychological distress a person experiences when their sex assigned at birth and gender don't match, is something Corinna struggled with during the transition to menopause. “I had to up my level of therapy, because I was actually having some dysphoria even though it's not usually something that happens to me a lot,” they said.

Corinna explained that people who experience dysphoria often have to avoid resources and information regarding perimenopause and menopause because of the emotional pain it would create. “Even for cisgender women, historically, a lot of the way that menopause has been talked about has talked about gender in a way that has created some gender identity crises,” they said.

Studies show that women after ovary removal or experiencing decreased ovarian function, because of PCOS, report feeling like “less of a woman.” Studies specifically focused on perimenopause in this regard are not readily available. However, Corinna emphasizes that tying reproductive function so closely with women’s gender identity hinders the conversations around perimenopause.

“I think that talking about this more inclusively and talking about perimenopause and menopause as something that happens to people actually really serves everybody better.”