When It’s Not “Just” Per­i­menopause

Why this di­ag­no­sis is made too of­ten, and how to pro­tect your­self


TWO YEARS AGO, Katy Quinn, a 50-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.”

The di­ag­no­sis chal­lenge

First, what is per­i­menopause? Most sim­ply, it’s the ramp up to menopause, marked by shift­ing hor­mones (es­tro­gen and pro­ges­terone), skipped pe­ri­ods, and a wide range of phys­i­cal and moodrelate­d 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.

Dissed and dis­missed

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.

The dan­gers of as­sum­ing

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 48­yearold 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 daugh­terin­law, 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.

The men­tal health is­sue

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.

What you should do

“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.

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