Before Your Time: The Early Menopause Survival Guide

ALSO BY EVELINA WEIDMAN STERLING

AND ANGIE BEST-BOSS

Budgeting for Infertility

BEFORE YOUR TIME

The Early Menopause

Survival Guide

EVELINA WEIDMAN STERLING, PH.D.

ANGIE BEST-BOSS

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Copyright © 2010 by Evelina Weidman Sterling and Angela Best-Boss

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Library of Congress Cataloging-in-Publication Data

Sterling, Evelina Weidman.

Before your time / Evelina Weidman Sterling, Angie Best-Boss.

p. cm.

Includes bibliographical references and index.

1. Menopause—Popular works. I. Best-Boss, Angie. II. Title.

RG186.S746 2010

618.1'75—dc22 2009035800

ISBN 978-1-4391-0845-1

ISBN 978-1-4391-3492-4 (ebook)

Authors’ Note

The contents of this work are intended to further understanding and discussion and are not intended to recommend or promote a specific diagnosis or treatment for any person. In light of ongoing research, changes in government regulations, and changes in treatment and diagnostic protocols, the reader is strongly urged to consult with her own health care professionals and to carefully review all medical information.

While publications, Web sites, organizations, and individual practitioners are mentioned in this book, either as citations or as suggested sources of information, the authors do not necessarily endorse all of the information or opinions presented by a provider or organization.

This book is humbly dedicated to all of the women

who gave deeply of their time and friendship,

sharing their experiences with us

so that others might benefit from their struggles.

We honor you.

Contents

Foreword

Part One: Understanding What’s Going On

1 Not Your Mother’s Menopause

2 The Menstrual Cycle Is a Vital Sign

3 Know Your Hormones

4 Get a Diagnosis

Part Two: Why Me? It’s More Common than

You Think

5 Health-Related Causes of Early Menopause

6 Ovarian Insufficiency Due to Surgery

7 Cancer and Ovarian Function

Part Three: Treatment Options

8 Your Health Care Providers

9 Medical Treatments

10 Complementary and Lifestyle Treatments

11 Coping with the Emotional and Physical Effects

Part Four: Living Well

12 Accept Your Emotions

13 Build Relationships

14 Reclaim Your Sexuality

15 Adolescents’ Needs

Part Five: Looking Ahead

16 Planning Your Family

17 A Lifetime of Living Well

18 The Future of Care

Menstrual Cycle Symptom Tracker

Menstrual History Questionnaire

Resources

Acknowledgments

Index

Foreword

Dr. Marcie Richardson

As the baby boomers enter the final third of their lives, menopause has come out of the closet. Bookstores have shelves of books and pharmacies have scores of over-the-counter remedies to help women manage this normal life transition. And that does not even touch upon what is available on the Internet: information, infomercials, propaganda, and products ranging from special sweat-absorbing bedding to vaginal exercisers and hormones of all varieties. Menopause obviously has great meaning for women, but it also generates controversy among scholars, medical experts, and others who write and think about women and their lives. But early menopause is different.

Every year or so, as a generalist in obstetrics and gynecology, I see young women with menstrual irregularities—maybe a few hot flashes, or maybe not. Some might have noticed vaginal dryness. Some will have a mother or sister who went through menopause early. And over the subsequent weeks as testing is completed (it can take some time because some of the testing has to be timed by the menstrual cycle) the diagnosis of premature menopause unfolds. It’s not cancer, it isn’t really life threatening, but it is devastating to these women.

And then there are the women I see in my Menopause Consultation Clinic, who come in with the diagnosis of premature menopause or premature ovarian failure. Often it has taken months or years to arrive at an explanation for their symptoms. They are often baffled and uninformed—or misinformed. They have low self-esteem, can be depressed, and their relationships are often suffering.

The milestones in a woman’s life, of which menopause is one, not only mark the passage of time but also help define her role in society. Women who don’t have normal periods or are infertile or who have premature menopause have a lot to contend with. They have to first understand their condition and get all the medical information available, then they sometimes have to readjust their life expectations and communicate those to the people they know and love. Such women need all the help they can get and are fortunate to have Before Your Time as a source of support.

The terms premature menopause, the bleaker premature ovarian failure, or the terms that some experts are proposing more recently like primary ovarian insufficiency or even premature ovarian aging tell a story. Each name tells a different story. It’s the story of a natural process happening too soon—sometimes way too soon. Is this condition a failure of a woman’s ovaries—the organ that makes her female? Does the gentler insufficiency help women, or belie the complexity and significance of these conditions? These are the questions that women—and their physicians—are grappling with, and it’s among the many that are explored within these pages.

But keep in mind: the medical understanding of early menopause is definitely a work in progress. More is being clarified about the genetic and autoimmune nature of failing ovaries every day, and there is much more to be revealed. The options for fertility treatments or ways to build a family expand all the time. And of course there are the persistent, troubling uncertainties about the harms and benefits of hormone therapy (where most of the data and much of medical and nonmedical opinion derives from studies of women a decade or two older than those with early menopause).

Evelina Weidman Sterling and Angie Best-Boss are accomplished women’s health advocates and educators who have both had personal experience with infertility. In this ambitious book they discuss female reproductive physiology and the ways it can go awry and cause early menopause. Then they address the broad implications these conditions have for the health and well-being of the women who find themselves menopausal before their time. Evelina and Angie have consulted experts and talked with women. And they have brought their own thoughtful perspective to their presentation.

Between 1 and 10 percent of women have ovaries that age early. And then there are women who have their ovaries surgically removed for cancer or other reasons, and the women who have their ovaries damaged by chemotherapy. Early menopause is more common than one might think. If you are one of those women, or know one of those women, you are lucky to have found this book to help you navigate the years ahead. And I am grateful to Evelina and Angie, who have given me something to offer the next patient I see who has had menstrual irregularities, perhaps some hot flashes, elevated FSH, indicating that she is soon to be menopausal.

Readers of this book will gain a framework to understand their medical condition and resources to assist them in getting the care they need going forward. And perhaps most important of all, they will hear the voices of others who share their journey and know they are not alone.

DR. MARCIE RICHARDSON is director of the menopause consultation service and assistant medical director in OB/GYN for clinical quality at Harvard Vanguard Medical Associates, a clinical instructor in obstetrics and gynecology at Harvard Medical School, and practices general OB/GYN at Harvard Vanguard and Beth Israel Deaconess Hospital in Boston. She served on the board of trustees of the North American Menopause Society (NAMS) for nine years, where she sat on the executive committee; and she was past chair of the NAMS Education Committee. For the past fifteen years, she has served on the advisory board of Harvard Women’s Health Watch. She was an editorial adviser for the production team of Our Bodies, Ourselves: Menopause.

    PART ONE

Understanding

             What’s Going On

1

Not Your Mother’s Menopause

After twenty years of regular monthly reminders that I am Woman, this absence of regularity is somewhat confusing. I am thirty-six, and part of what makes this tough is that a lot of people outside of my support network have never heard of this condition [premature menopause] and don’t always realize what I am going through, emotionally and physically. It feels like getting hit broadside by a speeding menopause bullet train to Hell, and you’re up to your eyeballs with symptoms that make whacking yourself over the head with a two-by-four seem like a fun idea. Now what?

—Leah

MORE THAN SIX THOUSAND women enter menopause each day. For many, this change of life arrives too suddenly or too soon. Early or premature menopause results from a wide variety of causes—and is much more common than you think. Women who suffer from an autoimmune disorder, have survived cancer, undergone a hysterectomy, been diagnosed with premature ovarian failure, or who just inherited a bad case of genetics can all experience changes in their ovarian function. More than 5 million women have either experienced early menopause or are at risk for experiencing it.

What’s the big deal? There was a musical made about menopause—how bad can it be? Older women often embrace menopause as an entry into a new (and sometimes better) phase of life. Think of it: a new sense of self-assurance, grown kids, no mortgage, increased disposable income, and more free time—who isn’t ready for that?

But early menopause doesn’t rate the same hoopla. You get lots of the symptoms, none of the perks. And doctors aren’t really sure what to do with you. Instead, women are left wondering, What the hell is going on? This isn’t supposed to be happening—not at this age, anyway! What’s a girl to do? This book will help you better understand early menopause (including exactly what it is, why it happens, and what it should be more accurately called) and provide you with the necessary information and skills you need to take control of your life, mind, body, and soul.

Before we embarked on this project, we had many questions ourselves. Searching on the Internet and in bookstores for books on menopause, we were bombarded with images of friendly, older, grandmotherly types. You know the pictures—a woman with perfectly coiffed silver hair, usually wearing some pastel shade, either gardening or surrounded by colorful flowers. She is smiling one of those huge smiles that extend ear to ear as if saying Isn’t this grand! It can be if you’re in your fifties and menopause is seen as a badge of honor.

But what about for younger women—what’s in it for them? No resources reflected the struggles described by women we knew. We knew there had to be something better. We needed something that would speak to the millions of women who are blindsided by irregular menstrual cycles or early menopause wreaking havoc in their otherwise normal lives. We started asking women’s health experts: What are women who go through this supposed to do? Unfortunately, a common response was menopause is menopause at any age. But not all women are the same. Most women in their twenties, thirties, or even forties have very little in common with their mother’s or grandmother’s generations. Why, then, should the experiences be the same?

Our sex lives are different. Changing hormones strain relationships far differently when you are in your thirties than it does for women in their fifties. The treatments aren’t the same either. Women have different questions about hormone therapy. What might be safe and appropriate for an older woman to take for a decade or so may not be safe for her daughter to take for forty years or vice versa—what may be recommended for younger women may not be right for older women. Plus, family-building plans are impacted.

Early menopause isn’t something we talk about easily with girlfriends. At our age, most women’s reproductive cycles run like clockwork. Women may have several friends and colleagues going through the same issues but never know it. More than one woman has kept tampons in her desk drawer so her colleagues won’t suspect she isn’t normal. Many women who go through this feel alone.

What Is Normal?

Unlike age-appropriate menopause, which is completely expected and considered a part of the natural aging process, there is nothing normal or natural about early or premature menopause. In fact, using the term menopause implies that it’s a natural process that is just occurring a little earlier than usual. No big deal, right? Wrong!

The typical age of menopause is around fifty. But for millions of women hormone changes occur before the age of forty. The complete cessation of menstruation that occurs before this age, whether surgically induced (such as after a hysterectomy), medication-induced (after some forms of cancer treatment), or due to plain old luck-of-the-draw genetics, is known as premature menopause. Everything from the environment to premature ovarian failure, cancer, and other illness plays a role, and diminishing ovarian function can actually start at any age.

A few important statistics about premature and early menopause:

•Half a million women go through premature menopause each year because their ovaries stop functioning normally.

•Two million women experience surgical menopause annually.

•More than 60,000 women of childbearing age are diagnosed with some type of cancer annually. Cancer treatments (such as chemotherapy, radiation, and surgery) can all cause early menopause.

•More than 500,000 young women are survivors of childhood cancer or cancer during their early reproductive years; most of them will experience the side effect of early menopause.

When Something Is Wrong

The best decision I have made so far about this condition is this: I made sure I educated myself about my condition. I talked about it with people. When I first found out, I felt very alone; I didn’t know that there were other people out there with the same situation. I have also come to some sort of peace with this. It has taken me a long time. I allow myself to cry about it when I feel down about it, but I also reach out when I need help. The good thing is, I know I am not alone.

—Marybeth

We believe you can take charge of both your health and your life. You are unique, and there is no cookie-cutter approach to your health and well-being that will make you instantly happy, perfectly healthy, and rich beyond your wildest dreams. (We wish!) No two women will have exactly the same pattern of symptoms or long-term concerns, so the decisions you make may be different from the decisions someone else with the same diagnosis makes. That doesn’t mean you are right and she is wrong or vice versa. It may mean that what you choose to do for treatment is right for right now. How you address your health and well-being will likely change over the years, and we hope it does. In this book we give you the tools to take the helm.

A disruption of the menstrual cycle can be a difficult transition for any woman, but when it comes long before you are ready, it can include many additional challenges. However, life can be good while you are living with and adapting to this reproductive system challenge. It is entirely possible for you to maintain your youthfulness and vibrancy and live a very full and satisfying life. It may require counseling, medical treatment, lifestyle changes, and a great support network, but you can be healthy and happy.

But (there’s always a but, isn’t there?) it won’t happen overnight. Or in two weeks. And it won’t happen automatically. Living well even though your ovaries are malfunctioning will take work, effort, and a decision to do so. You aren’t alone. Thousands of women have the same struggles, and their voices will join you along the journey.

In this book, we’ll explore some of the most common causes of early and premature menopause in more depth, explaining how to get a proper diagnosis. We’ll discuss the different treatment options available to alleviate your symptoms and help you live a healthy life. And we’ll look forward, at family-planning options and other lifestyle issues that are sure to arise.

I have finally discovered there is too little time in life to punish oneself for conditions one cannot control. I have chosen to lead a life in which I am active in the things I can control, as well as accepting the conditions I cannot. I cannot control my primary ovarian insufficiency (POI), but I can control my attitude toward it. I hope to share this attitude with others in the hope that they, too, one day will accept themselves for who they are and not for the disorder they carry. POI is a part of my life, but it is not my life.

—Carly

2

The Menstrual Cycle Is a Vital Sign

Sometimes I wish I could say to all my new dates: "I can’t read your mind, and if you don’t envision a future with me, you need to tell me immediately, no matter how much you’re enjoying the sex and/or companionship. And if we do perchance get married, we’re going to have to work on kids right away. I wish it weren’t that way, but unfortunately it is." Can you imagine his face?

—Lori

IS IT JUST ME, or is everyone else tired of hearing how famous guys like David Letterman, Tony Randall, and Larry King can hit one out of the ballpark despite their advanced paternal age? Larry King was seventy, for goodness’ sake. While contemporary women often have a difficult enough time getting a grip on the biological clock, ovarian insufficiency issues bring the biological clock to the foreground.

Back to sex ed for a few minutes. Developing egg cells (oocytes) are contained in fluid-filled cavities (follicles) in the wall of the ovaries. Each follicle contains one oocyte. A baby girl is born with egg cells (oocytes) in her ovaries. Well before we are born (in fact, at about twenty weeks’ gestation), we have about 6 million eggs within our ovaries. Most of them waste away, leaving only 1 to 2 million at birth. By the time puberty rolls around, we have only about 400,000 eggs left.

Only a small percentage of oocytes mature into eggs. Only a few hundred (about 500) of these eggs will actually ever be released during the reproductive years. They are supposed to last us for the rest of our lives; we release only about one every month until they are finally depleted. Until released, an egg remains dormant in its follicle, suspended in the middle of a cell division. Thus, eggs are some of the longest-lived cells in the body. The many thousands of oocytes that do not mature degenerate.

How quickly this depletion occurs is up for debate. Both genetic and environmental factors play an important role, but it is impossible to determine each woman’s script. One thing is known: once the eggs are depleted, a woman officially enters the time in her life traditionally called menopause. But what exactly does the term menopause mean in the context of younger women experiencing this transition?

Literally, menopause is the stopping (or pausing) of your menstrual cycle (or menses). Not all paths to menopause are straightforward and predictable. This process of the ovaries becoming more and more insufficient happens due to a variety of different causes and at various paces. As a result, we like to think of the entire process as more of a continuum rather than a black or white issue, which implies that either you are menopausal or you are not. Obviously, our ovaries are meant to decline naturally from day one and there is nothing anyone can do to stop this process. But once again, we are unclear about what this means and how it affects us as women.

The Biological Clock

We have all heard of the infamous biological clock. Most often, it goes something like this: you get your first period when you are around twelve to fourteen years old and suddenly become a fertile woman. You then spend the majority of your early couple of decades trying to prevent pregnancy. At some point, you may develop a strong desire to have a baby, so you throw away your birth control, get pregnant, and have a couple of children. You raise these children into adulthood, and if you’re lucky, they give you a couple of grandkids. You settle down into retirement, take up mall walking or gardening, and enter menopause. With no children at home, no periods to worry about, and no need for birth control, you enter a new phase of life, feeling freer than you ever have before. After all, isn’t this what every happy and healthy woman should aspire to?

Maybe not. It is one version of a life well lived, but not the only one. This type of scenario is not at all accurate or appropriate for all of today’s women. Our lives are much too complicated to be tied up into neat little boxes. Some women seek a partner; others don’t. Others may not want children or may choose to begin family building after their careers are established.

Our busy lifestyle is erratic at best and does not fit a nice little preplanned script. Women often struggle to get everything accomplished in a relatively short period of time: