Table Of ContentThe Makings of a Modern epideMic
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The Makings of a
Modern epidemic
endometriosis, gender and politics
kaTe seear
Curtin University, Australia
© kate seear 2014
all rights reserved. no part of this publication may be reproduced, stored in a retrieval
system or transmitted in any form or by any means, electronic, mechanical, photocopying,
recording or otherwise without the prior permission of the publisher.
kate seear has asserted her right under the copyright, designs and patents act, 1988, to be
identified as the author of this work.
published by
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British Library Cataloguing in Publication Data
a catalogue record for this book is available from the British Library.
The Library of Congress has cataloged the printed edition as follows:
seear, kate, author.
The makings of a modern epidemic : endometriosis, gender and politics / by kate seear.
pages cm
includes bibliographical references and index.
isBn 978-1-4094-6082-4 (hardback) -- isBn 978-1-4094-6083-1 (ebook) -- isBn 978-
1-4724-0776-4 (epub) 1. endometriosis. 2. Women’s health services. 3. Women--health
and hygiene. i. Title.
rg483.e53s44 2014
618.1'42--dc23
2013034127
isBn 9781409460824 (hbk)
isBn 9781409460831 (ebk – pdf)
isBn 9781472407764 (ebk – epUB)
V
Contents
Acknowledgements vii
Introduction: Towards Pastiche 1
1 Crisis of the Modern:
On Advocacy, Research and the Rise of Endometriosis 27
2 The Disease of Theories:
On the Function of Medical Hypotheses 53
3 Standing up to the Beast:
On Mystery and Mastery in the Endometriosis Self-help Literature 77
4 The Typical Patient Profile:
On Treatment and the Constitution of Subjects 107
5 Sooks, Slobs and Monsters:
On Responsibility, Self-care and Living with Endometriosis 135
Conclusion: Pinning Disease Down 165
Bibliography 175
Index 193
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Acknowledgements
Although it is now a very different beast, this book originated as a PhD in
sociology that was supported by an Australian Postgraduate Award (APA).
I would like to thank both the School of Political and Social Inquiry and
the Department of Sociology at Monash University for their administrative
and financial support for the initial project. This book would not have been
possible without, first and foremost, the generosity and spirit of 20 women with
endometriosis who agreed to be interviewed for this study. I am tremendously
indebted to all of them for their time, and for the stories they shared. I also
wish to thank those who assisted me to locate participants for the study,
including friends and family, and staff and volunteers from the Endometriosis
Association of Victoria.
I am also indebted to my supervisors who were a wonderful support throughout
my candidature. This journey started in 2003, with Jan van Bommel, my Honours
supervisor. Jan supported my decision to pursue a doctorate and guided me through
the first two years of candidature, forever instilling in me a love of feminist theory
and practice. I owe an enormous debt of gratitude to Andrew Singleton, especially,
who was my main supervisor throughout the candidacy. Andrew’s patience,
support, insight and enthusiasm sustained me throughout the many trials and
tribulations of the project, as did our endless discussions about Australian cricket
and the wonders of the Hawthorn Football Club.
I would also like to thank a number of people who have been important to me
in various ways – first through my PhD – and later, in the writing of this book. I am
grateful to Nick Economou, Narelle Miragliotta, Mark Davis, Steven Angelides,
Michael Janover, Celia Roberts, Gayle Letherby, Anna Harris, Rebecca Conning,
Daniel Edwards, Genevieve Heard, Claire Tanner, Ibrahim Abraham, Liudmila
Kirpitchenko, Narelle Warren, Jennifer Sinclair, Jennifer Mitchell, Jenny Williams
and Sue Stevenson. To my dear friends Marina Cominos, Zareh Ghazarian and
Ben Whiteley – who put up with discussions about endometriosis over many
years – thank you. I am also thankful to Alan Petersen for his guidance, wisdom,
friendship and support. I am extremely grateful to Suzanne Fraser for her thoughts
and comments on an early draft of this manuscript, her encouragement to write
this book, and for her enthusiasm, sense of humour and friendship. Thanks, also,
to the very talented British artist Kaye Sedgwick (http://www.kayesedgwick.
co.uk/) who graciously provided the cover art for this book, and who shares my
commitment to raising awareness about endometriosis.
Portions of this book have been previously published. Material in Chapter 3
appeared as ‘Standing up to the Beast: Contradictory notions of control, un/
viii The Makings of a Modern Epidemic
certainty and risk in the endometriosis self–help literature’ in Critical Public
Health (Seear 2009a). A component of the argument from Chapter 4 appears
in Health, Risk and Society as ‘“Nobody really knows what it is or how to treat
it”: Why women with endometriosis do not comply with healthcare advice’
(Seear 2009d). These materials have been reproduced with permission of
the publishers.
I wish to thank my family, as well as the Dugmores, and all of my friends,
including Lys, Dids, Meg and Ro, especially. I am particularly grateful to my
sister Claire Seear, who has now put up with me for two books. And most of all, to
Stewart Dugmore, who planted the seed that has grown into this book, and whose
unending support and encouragement helped make it happen.
Finally, to my friend Lynette Watson, who continues to be an inspiration, and
who reminds me every day why this book is needed.
Introduction:
Towards Pastiche
What is Endometriosis?
In 2005, I sat down to conduct the first of many interviews for a doctoral thesis
exploring the experiences of women suffering from a chronic gynaecological
disease known as endometriosis. Wanda, my first interviewee, was 26 years of
age, and had suffered from the disease since she was a teenager. Over the course
of two hours, she talked me through the onset of symptoms, her journey towards
a diagnosis, and the repeated surgeries (six, at that stage) that she had undergone:
first, to diagnose the condition and later, as a form of treatment. In the year leading
up to our interview, Wanda’s health had declined to such an extent that she had
been formally certified as unfit for work – or medically ‘disabled’, to be more
precise. Having obtained that certification, Wanda was now receiving financial
support from the government in the form of a modest disability pension. Wanda’s
experience of endometriosis was similar, in many ways, to the experiences of other
women that I would go on to interview for my study. Endometriosis had had a
profound and significant effect on her life, a life that had come to be characterised
by encounters with gynaecologists, bowel surgeons, urologists and naturopaths,
and by cycles of invasive medical treatment.
Towards the end of our interview, however, something unexpected happened.
Wanda nervously wondered if she might ask me a question. Confessing, with
some embarrassment, that she still didn’t really know what endometriosis was,
Wanda asked if I wouldn’t mind explaining the disease to her. Wanda’s request
both surprised and worried me. How could she not know what endometriosis was?
How had the disease been explained to her in the past? What had her treating
doctors been telling (or perhaps not telling) her? What was it like to live with
this uncertainty, confusion and lack of clarity? How might this shape her lived
experience of the disease? Inspired by my own encounters with feminist literature
on the importance of open, two-way communications in the research encounter,1 I
quickly began a lengthy explanation of the condition as I understood it. Drawing
upon my own experiences with endometriosis and all that I knew from medical
texts, self-help books and other resources, I explained how and when the disease
1 There is now an enormous body of literature dealing with traditional forms of
interviewing, feminist critiques of the interview and research method, much of which is
formed through feminist explorations of empiricism and positivism. Some of the earliest and
best-known work in this respect comes from Ann Oakley (1981, 1979) and Sandra Harding
(1987, 1986). A useful overview of ideas and issues can be found in Letherby (2003).
