Celia Ellenberg has been aware of so-called perimenopause for half a decade, commissioning and editing articles on the subject as the former beauty director of Vogue in the United States. Then she started experiencing symptoms. By the age of 40, she was losing her hair, suffering from insomnia and noticing drastic changes in her menstrual cycle.
“You don’t wake up one morning at menopause,” explains the 43-year-old woman. “There is a slow decline in hormonal changes.”
She asked her GP and gynecologist if they could help her. As Ellenberg remembers it now, they both said she was too young to experience perimenopause.
Ellenberg turned to an herbalist he had been seeing for years; she was, according to Ellenberg, the only health professional who listened to him. The herbalist suggested Ellenberg get an iron board and see a doctor who specializes in hormonal changes. But he charged $900 per appointment and his office didn’t accept insurance.
Over the next three years, Ellenberg, who now runs her own beauty and wellness consultancy, continued to ask her doctors to assess her hormone levels and provide general advice, as several of her slightly older friends had told her about the transformative powers of hormone replacement therapy — a concoction that can include pills, patches, sprays, creams and gels to supplement a woman’s natural hormones.
One Saturday last spring, she found herself stuck on a couch in her New York apartment, without the energy to get up or interact with her two young children. She considered going to the emergency room. Instead, she dialed her gynecologist’s on-call number and was directed to a nurse in Tennessee via an answering machine.
When she asked to be connected to an on-call doctor at her medical office, she was encouraged to make an appointment in person. There was a vacancy on the agenda – in four months. Ellenberg said she needed to see someone that week and was referred to a “center for midlife women” in midtown Manhattan. The next available appointment was in 14 months.
“I’m a global wellness expert and I live in New York and I still haven’t been able to find any help,” she says. “This is so absurd to me.”
It wasn’t until her friend, an art gallery owner, shared Ellenberg’s story in a WhatsApp group that Ellenberg learned about a medical clinic that offered comprehensive hormone consultations, accepted insurance, and didn’t make patients wait more than a year to be seen.
“Perimenopause is firmly entrenched in the cultural zeitgeist,” says Ellenberg, but care doesn’t seem to have kept pace.
Perimenopause – the term for the decade or more that passes before a woman stops menstruating – is at the center of the cultural landscape. Celebrities mention the word in morning interviews and sell supplements and moisturizers explicitly aimed at middle-aged women. And yet, even among the group of women who seemingly lack for nothing, it’s easier to get off the waiting list for a Row Margaux bag than to get proper perimenopause treatment. Although the symptoms seem inevitable, relief seems extremely difficult to find.
Feeling abandoned by the medical establishment, legions of women of almost certain age are turning to their networks and exchanging names and phone numbers of new telemedicine companies and concierge medical clinics as if they were pages torn from texts forbidden in Tudor England.
“We’re all whispering and trying to find the answers,” says New York-based Lauren Caulk, 43, who works as a retoucher in Mario Sorrenti’s studio. “I learn more from Instagram comments or conversations with my friends than from a doctor’s appointment.”
Many women said their gynecological exams, which tend to prioritize Pap smears and manual breast exams, rarely involved conversations about perimenopausal symptoms like insomnia, depression and brain fog, let alone hair loss, hot flashes and weight gain. Unlike many illnesses that can be identified through testing, perimenopause is a constellation of symptoms that requires a little more time to diagnose than many professionals have.
“Doctors are exhausted and having to do intensive work to keep the lights on,” says Molly McBride, a New York physician who is one of a growing number of doctors setting up private clinics where patients pay out of pocket for appointments that can last more than an hour.
As requests for relief become more common, prescriptions for estrogen patches and progesterone tablets, two of the most common treatments, may remain unaffordable.
“The fact is, with 85 million women in the United States in some stage of perimenopause or menopause and fewer than 3,000 certified menopause providers, demand still far outstrips access,” says Anne Fulenwider, former Marie Claire editor-in-chief turned co-founder of Alloy Health, a telemedicine company focused on menopause.
“In New York, getting an appointment with even an average doctor is like getting a reservation at a big restaurant,” Fulenwider says.
Most of Fulenwider’s clients learn about their business through other people, through book club visits and focus groups.
It is this type of informal referral network that Kathleen Jordan, chief medical officer of Midi, a Bay Area-based telemedicine company specializing in women over 35, relies on.
“Perimenopausal patients are millennials, and millennials are really tech-savvy and wellness-minded,” she says. “Even if they don’t get what they need at regular doctor visits, people ask their friends where to go, or go to a menopause Facebook group and ask for help.” Someone there might even recommend Midi.
It’s not just about long waiting lists. Women turn to informal networks after feeling ignored or neglected. Anna Sullivan, 45, a writer in Santa Fe, New Mexico, was medically brought into menopause when she began hormone treatment for breast cancer seven years ago. She remembers asking an oncologist about vaginal dryness and pain. The answer was “use it or lose it”. (She turned to a Reddit group called The Unmentionables, where she met a woman who was sending her homemade lube from British Columbia.)
“I constantly hear about women being neglected by doctors,” says Robert P. Kauffman, professor of obstetrics and gynecology at Texas Tech University School of Medicine and a member of the American College of Obstetricians and Gynecologists. “The recommendation from ACOG and the Menopause Society is not to do hormone testing, but to treat the patient with hormones if her age and symptoms match.”
In the hands of the right professional, hormone replacement therapy could be the solution, he says, but there is no simple test and other medical explanations, such as thyroid disease, must be ruled out.
Many professionals are still influenced by a 2002 study from the Women’s Health Initiative that made headlines by linking certain hormone replacement treatments to cardiac events and a slight increase in breast cancer.
Media coverage of the study rarely mentioned the fact that women under 60 were not at increased risk of heart problems when starting hormone replacement therapy and that the increased risk of breast cancer could have been explained by other factors.
“A lot of doctors and media outlets got it wrong, and we’re still paying the price,” Kauffman says.
Expecting a typical gynecologist to sit down and try to untangle the mysterious symptoms that may be linked to perimenopause is “like asking a chef who specializes in Chinese cuisine to build a house,” says Alicia Robbins, a gynecologist who left her practice in New York to start a concierge service that caters to middle-aged women.
Robbins, whose menopause clinic is in Greenwich, Conn., will be the first person to admit that he often disappointed his patients. “I felt so guilty,” she says. “Historically, we’ve focused only on ‘bikini medicine’” — or caring for women’s breasts and reproductive organs, he says. “My patients weren’t sleeping and we were putting them on birth control pills, or we were saying, ‘Is sex painful? Have a glass of wine.'”
This was not, she now realized, a good solution.
This article was originally published in the New York Times.