AND MAY NOT BE REPRODUCED WITHOUT THE AUTHOR'S PERMISSION
In late fall 2005, Misinformed Consent – Women’s Stories about Unnecessary hysterectomy by
Lise Cloutier-Steele of Ottawa, Canada, was referenced in the U.S. Journal of Legal Medicine,
Volume 26, No. 4, pages 507-521. The legislation proposal by Rebecca L. Van Court, a third year
student at Southern Illinois University of Law, quotes specifics from Misinformed Consent.
Her document is an important first step in the process of mandating legislation on informed
consent and a woman’s right to hysterectomy alternatives.
Ms. Van Court concluded that enacting legislation requiring physicians to discuss hysterectomy
alternatives, as well as the consequences of the surgery, would be equally beneficial to doctors
and their patients, and greater informed consent could, in turn, have a significant impact on the
high rate of hysterectomy in the United States. Ms. Van Court’s final statement is a direct quote
from Ellen’s story in Misinformed Consent: “Informed consent must become not just a piece of paper,
but a real awareness of what can happen and what will happen
to women who have their reproductive organs removed.”
Misinformed Consent - 13 Women Share Their
Stories About Unnecessary Hysterectomy
by Lise Cloutier Steele
Foreword by Stanley T. West, M.D., FACOG and
Author of The Hysterectomy Hoax
The U.S. edition of Misinformed Consent, published by Next Decade, Inc.,
is now available through amazon.com, click on the book below to order.
Click to order from amazon.com
The brave, beleagured women who tell their stories in Misinformed Consent provide us with
vivid proof that most women and most physicians remain woefully ignorant about the
alternatives to and the consequences of unnecessary hysterectomy.
In order to ensure that we and our physicians become better informed, this poignant book
begins with a strong demand for change and ends with a comprehensive
list of resources that help women better protect themselves.
Co-author of Our Bodies, Ourselves
for the New Century
Co-founder of the Boston
Women's Health Book Collective
"Should be read by every woman contemplating a hysterectomy."
-- Ruth Harriet Jacobs, Ph.D., author of Be an Outrageous Older Woman
By the age of sixty, about one third of all North American women
have had a hysterectomy. Most of these procedures are elective, agreed
to by women whose doctors said that the uterus has no value beyond
reproduction, and that the lost hormones can be replaced artificially.
They are not told that hysterectomy and ovary removal is female
castration. They are not warned that hysterectomies can be responsible
for dramatic physical and mental anguish in many of the women they
have been performed on. They are not told that there are less
invasive, more progressive treatments. They are not encouraged to
recognize that, in agreeing to this life-altering and irreversible
surgery, they may be agreeing to physical, sexual, and psychological mutilation.
In Misinformed Consent, Lise Cloutier-Steele has joined twelve other
survivors to speak out about the prejudices and the traumas that
accompanied their hysterectomies. Combining these moving personal
experiences with reliable advice on alternative treatments, a medical
terminology section for easy reference, a list of questions women
should ask their doctors before agreeing to the surgery,
and a comprehensive resources section, Misinformed Consent
will empower women everywhere to demand better and more honest care.
Lise Cloutier-Steele is a professional writer and editor,
who has herself had a traumatic experience with hysterectomy.
She is the author of Living and Learning with a Child Who Stutters,
and is the recipient of a Canada 125 Award in recognition of a
significant contribution to the community and to Canada for her
volunteer efforts to help the parents of children who stutter.
TABLE OF CONTENTS:
Part I: Introduction
Foreword, by Stanley T. West, M.D., FACOG
Introduction, by Lise Cloutier-Steele
Part II: Our Stories
Introduction, by Mary Anne Wyatt of Massachusetts
Lise: My Own Story
Gayle Eve Mary Anne
Part III: Resources
Publications of Interest
Clinics, Support Groups, Organizations, and Advocacy Groups
Questions to Ask Your Doctor when Hysterectomy,
Oophorectomy, or Other Pelvic Surgery Is Recommended
Incredible, heart-breaking true stories all
women will want to read and share.
-Sondra Forest, M.S.W., A.C.S.W., C.S.W., CAC1
Clinical Social Worker
Family Service, Inc.
Give this book to any friend before she has a hysterectomy.
It is a vivid reminder that we must take charge of our own medical care.
There are many caring, knowledgeable and careful doctors who can
be trusted, and there are also doctors who can't.
Unfortunately, your failure to investigate may be a life-changing event.
On a personal note, how lucky we all are to have sources like
Oprah, Donahue and the news media to alert us to new developments in medicine!
-Marjorie Bekaert Thomas, Florida
President, Ivanhoe Broadcast News
This book is a must, before any women gives consent to a hysterectomy or oophorectomy.
Get informed first and learn about the alternatives to avoid surgery.
-Pete Hueseman, R.Ph.,P.D.
St. Louis, MO
Bellevue Pharmacy Solutions
I feel sad that this work is needed,
but glad that it was done so well.
-Peter R. Mansfield, M.D.
Department of General Practice,
University of Adelaide, Australia
Director, Healthy Skepticism
Praise for Misinformed Consent
“To be forewarned is to be forearmed.” This book eloquently
and persuasively makes its case for the need for information,
discussion, and counseling prior to the decision about whether
to proceed with [hysterectomy] so that women undergoing
[this major surgery] can make informed choices.
--- B. Norman Barwin, C.M., M.D., FSOGC, FRCOG,
FACOG, Director, Gynecology and Infertility, The
Midlife and PMS Centre, Ottawa, author of numerous
publications on obstetrics and gynecology, recipient of many awards
including the Order of Canada for his work as a gynecologist,
researcher and medical educator who has had a profound
impact on both the biological and psychosocial
aspects of women’s reproductive health.
These stories remind me of a debate that I had with another
prominent physician, who advocated hysterectomies. He stated that
he had “never” heard a woman complain following a hysterectomy
in the thirty years he had been doing them. A former patient of
his in the audience stated that he had never heard a complaint
because he never listened to his patients. I am certain that
any woman who reads this book will think twice before
agreeing to an unnecessary hysterectomy.
--- Stanley T. West, M.D., FACOG, Chief,
Division of Reproductive Endocrinology and
Infertility, St. Vincent’s Hospital and Medical Center,
New York, N.Y., author of The Hysterectomy Hoax
(Doubleday 1994, Next Decade, Inc., NJ, 2002),
Misinformed Consent is a therapeutic alliance for women who
have experienced the detrimental effects of hysterectomy
- they are not alone. It is a reminder to medical professionals
that good communication is the foundation of the patient-doctor
relationship, and that above all else, they should do no harm.
The questions must be asked, and answers must be given.
Misinformed Consent offers a way to begin this conversation.
--- Barbara A. Yeats, M.D., CCFP, Ottawa
Neither fertility, zest for life, sexual functioning, nor libido
can be put back, and some women are left permanently damaged
by [hysterectomy]. No potion or remedy can restore what has
been lost: this is the end of womanhood, and the beginning of a
lifelong battle to restore a sense of well-being.
--- Sandra Simkin, Director and National Campaign Coordinator,
Campaign Against Hysterectomy and Unnecessary Operations
on Women, U.K., author of The Case Against Hysterectomy (1996)
Lise Cloutier-Steele’s book prevails both as a major success and
a dismal failure, but that failure is not hers. It lies in the
fact that hers is the voice that found it necessary to speak
out against a medical community that continues to spread
misinformation about surgeries like hysterectomy. The truth about
the potentially devastating side effects of medical procedures
and drugs should come from medical professionals. Instead,
so much of the vital information comes from survivors like Lise,
who possess the courage to write about medicine’s often-tragic
results because they themselves learned too late about the dark side of medicine.
--- Tonda R. Bian, investigative journalist, Florida,
author of The Drug Lords: America’s Pharmaceutical Cartel (1997)
Until the time when Misinformed Consent is required reading in
every medical school, women faced with this decision should regard
it as their self-defense manual in advocating for themselves.
--- Michael Greger, M.D., Massachusetts, author of
Heart Failure: Diary of a Third-Year Medical Student
This is a work born of pain . . . that may help to prevent more suffering.
--- Avis Favaro, medical correspondent, CTV Television Network, Toronto
It is still difficult to persuade some medical students that
reproductive-associated organs may contribute to health and
well-being unrelated to childbearing. This book should be
required reading for any prospective hysterectomy patient,
prior to informed consent discussions.
--- The late Marie M. Cassidy, Ph.D., DSc,
Citizens for Responsible Care and Research, New York, N.Y.
We do not know enough about the human variation in the body’s
delicate hormonal rhythms to surgically excise the organs where
they originate without great caution and more information.
We need research in this area to better understand the hormonal
roots of our joys, sexual drives, pleasures, and pains.
The stories in this book should motivate researchers to look for those roots.
--- Duane F. Stroman, Ph.D., Pennsylvania, author of
The Medical Establishment and Social Responsibility (1976),
Quick Knife: Unnecessary Surgery U.S.A. (1979), and
Mental Retardation in Social Context (1989)
This book documents unnecessary surgery, incompetently perpetrated,
with devastating results on the women and their families.
--- Eileen Marie Wayne, M.D., Illinois,
Misinformed Consent is an extraordinary source of information!
Every woman who reads this book will be better prepared to face
doctors, not just gynecologists, but specialists from all other
medical domains. This is the end of naïveté . . .
at least I hope so. --- Alice Régnier, R.N., Montréal
During my training to become an obstetrician-gynecologist,
I too was “taught” that apart from loss of childbearing, removing
the uterus did not have any negative effects. Now, much of my
practice is devoted to offering second opinions to women who
have been told that they “need” a hysterectomy for conditions
such as fibroids, endometriosis, uterine prolapse, abnormal
bleeding, and cervical dysplasia. The most powerful tool we have
for effecting transformation is knowledge. There is nothing
quite as powerful as hearing the experiences of those women who
have had hysterectomies. I hope the information in this book
empowers women to demand better and more honest care so that we
can put an end to the thousands of unnecessary
hysterectomies being performed.
--- Mitchell J. Levine, M.D., FACOG, Massachusetts,
Chief of the Department of Obstetrics and Gynecology at the
Deaconess Waltham Hospital in Waltham, Massachusetts and the
Director of the Women Care Organization,
Think of how men would respond if their doctors wanted to remove
their testicles and prostate glands once they had all the children
they wanted, and then put them on synthetic testosterone drugs.
Removing a woman’s ovaries is no less a violation and has
equally devastating consequences, not the least of which are
the side effects of the synthetic hormones she is
put on to replace her own.
--- John R. Lee, M.D., California, author of
What Your Doctor May Not Tell You about Menopause,
Misinformed Consent is a book that should be read by every woman
contemplating a hysterectomy, by every medical student and
physician, [and by] husbands, lovers, and friends
of women contemplating a hysterectomy.
--- Ruth Harriet Jacobs, Ph.D., author of Be an Outrageous Older Woman
Misinformed Consent is a carefully reasoned analysis and chilling
exposé of the insidious betrayal of women who are hysterectomized.
After all the research and writing I have done on world-wide
atrocities against women under patriarchy, this book
still manages to inform and shock me.
--- Mary Daly, Ph.D., Massachusetts, author of
Beyond God the Father, Gyn/Ecology: The Metaethics
of Radical Feminism and Quintessence: Realizing the Archaic Future
Misinformed Consent is a sobering call to women, and the men
who love them, to examine carefully a prescription for
hysterectomy. We, the scientific investigators and the
physicians who learn from us, are novices when it comes
to examining the miracle of life. If you are considering
hysterectomy . . . don’t let anyone fool you into believing
that the hormones you lose can be replaced.
--- Winnifred B. Cutler, Ph.D., Founder and President of the Athena
Institute, Pennsylvania, author of several books, including
Hysterectomy Before and After and Menopause: A Guide
for Women and the Men Who Love Them,
Every doctor should read this book before recommending
a hysterectomy. Women need all the information available.
We don’t need to be “protected” from the facts.
--- Fay Campbell, MSEd, Associate Director,
Endometriosis Association, Wisconsin,
Lise Cloutier-Steele has blown the whistle on how women have
been misinformed and exploited by a medical system that has
too often put its financial interests ahead of its scientific
interests. The powerful language, the compelling stories,
the true effects of life after hysterectomy make this book
a must-read for every woman. It is also a wake-up call to
medical professionals who recommend and perform hysterectomies.
--- Charles B. Inlander, President, People’s Medical Society, Pennsylvania,
co-author of Take This Book to the Gynecologist With You,
“First do no harm” . . . what happened? This book deserves
the attention of any woman making a major decision about her
health - straight talk by women for women, and a networking
system to voice fears and questions about your health.
You can only make choices when you are informed, otherwise
your doctor will make them for you, often with
--- Agnes Heron, President of Womentlc.com,
Florida, and radio talk-show host on women’s health
After the first Institute for Clinical Evaluative Services (ICES)
atlas in Ontario revealed the disturbing regional discrepancies
in hysterectomy rates, we at Women’s College Hospital began talking
about the need for a 1-800-they-say-you-need-a-hysterectomy
line for women to obtain an immediate second opinion.
The personal and poignant accounts found in Misinformed Consent
demonstrate how the present autopilot of so-called informed
consent must be corrected. As a family physician and Member of
Parliament, it is distressing to me that women are clearly
being subjected to unnecessary and sometimes debilitating
surgery. This book is extremely important, not only in elucidating
the problem, but also in providing practical suggestions
for the real solution - empowerment.
--- Carolyn Bennett, M.D., Member of Parliament, House of Commons,
Ottawa, author of Kill or Cure - How Canadians can
Remake their Health Care System,
HarperCollins Canada, 2000
Misinformed Consent confirms my opinion that the medical
profession does not really know how to treat women. It is very
important that any woman considering hysterectomy be fully
aware of all possible alternative treatments before surgery,
as well as the availability of natural hormone replacement.
She should investigate the sites of the HERS Foundation
and Sans Uteri before surgery rather than two years after.
--- Mel Alter, BScPhm, LPh, FACA, pharmacist, Montréal
Lise Cloutier-Steele and the other contributors to this volume
have very courageously broken the myths and silence surrounding
hysterectomy and its aftermath. A definite must-read for all
women who are faced with this life-altering decision.
--- G. Asha, neuroscientist, India