Celia Ellenberg knew about this thing called perimenopause half a decade ago — she was assigning and editing articles about it, as the former beauty director at Vogue. Then she began to experience the symptoms herself. Around the time she turned 40, she was shedding hair, suffering from insomnia and noticing drastic shifts in her menstrual cycle. “You don’t just wake up one morning in menopause,” the 43-year-old said. “There is a slow tumble of hormonal changes.”
She asked her primary care doctor and her OB-GYN if they could help. As Ms. Ellenberg remembers it now, they both told her she was too young to be experiencing perimenopause.
Ms. Ellenberg turned to an herbalist she’d been seeing for years; she was, Ms. Ellenberg said, the only health care provider who listened. The herbalist suggested that Ms. Ellenberg get an iron panel done, and see a doctor who specialized in hormone shifts. But he charged $900 per visit and his office did not take insurance.
For the next three years, Ms. Ellenberg, who now runs her own beauty and wellness consultancy, kept asking her doctors to assess her hormone levels and provide overall guidance, as several of her slightly older friends had told her about the life-changing powers of hormone replacement therapy — a mix that can include pills, patches, sprays, creams and gels to supplement a woman’s natural hormones.
One Saturday this spring, she found herself beached on a couch in her Brooklyn apartment, too drained of energy to stand up or engage with her two young children. She considered going to the emergency room. Instead, she dialed her OB-GYN’s off-hours number and was routed to a nurse in Tennessee through a call service.
When she demanded to be connected to an on-call physician at her doctor’s office, she was encouraged to make an in-person appointment. There was an opening on the schedule — it was four months away. Ms. Ellenberg explained she needed to see somebody that week, and was directed to a “women’s midlife center” in midtown Manhattan. The next available appointment was 14 months away.
“I am a global wellness expert and I live in New York City and I still couldn’t find help,” she said. “It’s so crazy to me.”
It was not until her friend, an art gallerist, shared Ms. Ellenberg’s story on a WhatsApp group chat, that Ms. Ellenberg learned of a medical practice that offered comprehensive hormonal consultations, took insurance and did not make patients wait more than a year to be seen.
“Perimenopause is firmly in the cultural zeitgeist,” Ms. Ellenberg said — but the care does not feel like it’s caught up.
Perimenopause — the term for the decade or so before a woman stops menstruating — is front and center in the cultural landscape. Celebrities waggle the word around in morning talk-show interviews, and shill supplements and moisturizers explicitly geared at women in midlife. And yet, even among the tranche of women who want for seemingly nothing, getting off the wait-list for a Margaux bag from the Row is easier than securing proper perimenopausal treatment. Despite symptoms seeming inescapable, relief appears maddeningly hard to come by.
Feeling let down by the medical establishment, legions of women of an almost-certain age are turning to their networks and slipping one another names and phone numbers of new telehealth companies and concierge medical practices as if they were pages ripped from banned texts in Tudor England.
“We’re all whispering and trying to find the answers,” said Lauren Caulk, a 43-year-old photographer based in Brooklyn who works as a retoucher in Mario Sorrenti’s studio. “I find out more from the comments section on Instagram accounts or conversations with my friends than I do at a doctor’s appointment.”
Many women said their OB-GYN checkups, which tend to prioritize pap smears and manual breast exams, rarely involved conversations about perimenopausal symptoms such as insomnia, depression and brain fog, not to mention hair loss, hot flashes and weight gain. Unlike many maladies, which can be identified via testing, perimenopause is a constellation of symptoms whose diagnosis requires a bit more time than many practitioners have.
“Doctors are burned out and they need to see volume to keep lights on,” said Molly McBride, a physician in Manhattan who is among the growing number of doctors setting up private clinics where patients pay out-of-pocket fees for appointments that can run over an hour.
As requests for treatment become more common, prescriptions for estrogen patches and progesterone tablets, two of the most common cures, can remain elusive.
“The fact remains that with 85 million women in the U.S. in some stage of perimenopause or menopause and fewer than 3,000 certified menopause providers, demand still massively outpaces access,” said Anne Fulenwider, a former Marie Claire editor turned co-founder of Alloy Health, a telehealth company focused on menopause.
“In New York City, getting an appointment with even an average doctor is like getting a reservation at a top restaurant,” Ms. Fulenwider said.
The bulk of Ms. Fulenwider’s clients learn about her company from one another, via book club digressions and group chats.
That kind of informal referral network is what Kathleen Jordan, the chief medical officer of Midi, a Bay Area-based telehealth company specializing in women over 35, counts on.
“Perimenopausal patients are millennials, and millennials are really tech-savvy and wellness-forward,” she said. “Even if they’re not getting what they need at regular doctors’ visits, people are asking their friends where to go or they’ll go on a menopause Facebook group and ask for help.” There, someone might even recommend Midi.
It’s not just about long waiting lists. Women are turning to informal networks after feeling ignored or dismissed. Anna Sullivan, 45, a writer in Santa Fe, N.M., was thrown into medically induced menopause when she went on hormone therapy for breast cancer treatment seven years ago. She recalled 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 instead, where she met a woman who sent her homemade lubricant from British Columbia.)
Jennie Blair, now based in London, found herself in a rough patch in her late 40s. “A lot of the doctors with whom I came into contact brushed it off, because I had children later in life and they were just like, ‘It’s stress,’” she said. Doctors said things like: “Life is hard. Get over it. You’re not ever going to be as happy as you were when you were 26 and 36.”
“I hear about women being discounted by physicians all the time,” said Robert P. Kauffman, a 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 of the A.C.O.G. and the Menopause Society is not to do hormone testing, but to go ahead and treat the patient with hormones if her age and symptom complex line up.”
In the right practitioner’s hands, hormone replacement therapy can be the answer — he said, but there is not a simple test and other medical explanations, like thyroid disease, need to be ruled out.
Many practitioners are still influenced by a 2002 study from the Women’s Health Initiative that made headlines when it linked some hormone replacement therapy with cardiac events and a small increase in breast cancer. Coverage of the study rarely made mention of the fact that women under 60 had no elevated risk of heart issues when they went on hormone replacement therapy, and the increased risk of breast cancer might have been explained by other factors. “Many doctors got it wrong, and much of the media got it wrong, and we’re still paying the price for it,” Dr. Kauffman said.
Expecting a typical OB-GYN to sit down and try to untangle the mysterious symptoms that can be related to perimenopause is “like asking a chef who specializes in Chinese cuisine to build a house,” said Alicia Robbins, an OB-GYN who left her practice in Manhattan to start up a concierge service that caters to women in midlife.
Dr. Robbins, whose boutique menopause clinic is in Greenwich, Conn., will be the first person to admit that she used to let her patients down. “I felt so much guilt,” she said. “Historically, we only focused on ‘bikini medicine’” — or care of women’s breasts and reproductive organs, she said. “My patients were not sleeping and we’d put them on the birth control pill, or we’d say: ‘Sex is painful? Have a glass of wine.’”
That was not, she realized now, a great solution.
These days, so many of Dr. Robbins’s patients have been slipping her number to friends that she has expanded her staff and is opening up a second clinic. Still, the concierge model comes at a cost that is out of reach to a vast majority who may want an appointment.
“We have a long way to go,” Dr. Robbins said. “We have not been there for women.”
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