Dr Iris Kerin Orbuch - Beating Endo

BEATING ENDO

How to Reclaim Your Life from Endometriosis

Dr Iris Kerin Orbuch

Dr Amy Stein

This book contains advice and information relating to health care. It should be used to supplement rather than replace the advice of your doctor or another trained health professional. If you know or suspect you have a health problem, it is recommended that you seek your doctor’s advice before embarking on any medical programme or treatment. All efforts have been made to assure the accuracy of the information contained in this book as of the date of publication. This publisher and the authors disclaim liability for any medical outcomes that may occur as a result of applying the methods suggested in this book.

Thorsons

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First published by Thorsons 2019

FIRST EDITION

© 2019 Iris Kerin Orbuch and Amy Stein

Cover design © HarperCollins Publishers Ltd 2019

Cover illustration © Shutterstock.com

Illustrations courtesy of Marie Dauenheimer

Photos courtesy of Richard Hutchings

A catalogue record of this book is available from the British Library

Iris Kerin Orbuch and Amy Stein assert the moral right to be identified as the authors of this work

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Source ISBN: 9780008305529

Ebook Edition © June 2019 ISBN: 9780008305536

Version 2019-06-07

To the one-tenth of all women on earth who are estimated to have

endometriosis, and to those among them who have been our patients

Cover

Title Page

Copyright

Dedication

Foreword by Bojana Novakovic

Foreword by Susan Yeagley

Introduction: Beating Endometriosis

1 What Is Endo? The Disease Process of Endometriosis

2 The Goal: Regaining Quality of Life

3 Endo and the Body’s Core: Why Physical Therapy Plays an Essential Role

4 Endo and the Bladder

5 Endo and the GI Tract

6 Endo and Sex

7 Pain, Disease, and the Central Nervous System: A Multimodal Strategy for a Multidimensional Disease

8 Endo and Nutrition

9 Endo and Your Environment

10 Endo and Your State of Mind

11 Excision Surgery

12 A Special Case: Endo and Teens (but This Chapter Is Not Just for Teens!)

13 Endo and Infertility

14 Reclaim Your Life

Acknowledgments

Resources: Information, Treatment, Support, Advocacy

Notes

List of Searchable Terms

About the Authors

About the Publisher

I had pelvic pain for more than two decades—and didn’t know why. As a teenager, I was told it was normal for girls to have painful periods; when I became sexually active, I was told it was normal for sex to hurt. A laparoscopy in 2005 came up negative for endometriosis; I now know the surgeon most likely did not know what she was looking for. Because endo had been ruled out as a cause, I was told the pain was in my head, or that sex hurt because I was uptight and anxious. Everyone I turned to pointed the finger back at me, so I started looking inward. My anxiety increased; the more pain there was, the more I worried that I was doing something wrong. This cycle of confusion, pain, and discomfort wreaked havoc on my mind, body, and central nervous system for fifteen years.

I’m no scientist, but I can say with complete confidence: There is nothing normal about knife-stabbing pain during your period, nausea with bowel movement during your period, burning, itching, tingling pain sporadically throughout your cycle—and definitely nothing normal about pain during intercourse. Even though women go through the painful act of childbirth, PAIN IS NOT SYNONYMOUS WITH BEING FEMALE. Possessing female reproductive organs doesn’t condemn you to eternal pain. We all know that life hurts. We all struggle. But pelvic pain is not a metaphor for life. It’s a real ailment with causes and conditions—and it can be treated.

My cause was endometriosis, but it lasted so long that I grew used to its symptoms and figured out how to “put up” with them. In November 2017, I started to experience severe lethargy and intestinal pain that six months of testing finally identified as SIBO—small intestinal bacterial overgrowth—which, like endo, is an inflammatory condition. By that time, I was also seeing a physical therapist specializing in pelvic pain during sex. Both the GI doctor and the physical therapist suggested I see Dr. Orbuch, proposing that the symptoms I was experiencing could be from long-standing endometriosis.

It’s difficult for an intelligent, well-read, independent woman like myself to contemplate that what a medical expert had once assured her was not the cause of her lifelong pain might well have been the cause all along. It’s hard to come to terms with the fact that the medical professionals got it wrong, and that maybe I should have listened to my body. Instead, I didn’t have time to keep digging or the confidence to tell the pros how to do their jobs. I had a life to live and ambitions to attend to, and the experts kept telling me the pain was just something I needed to live with.

Dr. Orbuch and I spoke for over an hour—not the usual fifteen minutes allotted by insurance providers for these appointments. We discussed my symptoms dating back to when I was a teenager. “Is this the pain you feel during sex?” she asked during my internal exam. I jumped in agony. “That’s endo,” she said.

In my twenty years of visiting various professionals, no one ever found the pain I feel with such precision. It was obvious that Dr. Orbuch knew what she was talking about.

We discussed surgery; the only way to actually diagnose endometriosis is a biopsy. I was afraid the same thing would happen as almost fifteen years before. “What if you don’t find anything?” I asked. “I’ll find something,” she said, and she smiled confidently.

It’s a bittersweet feeling to finally name what ails you after so long. On one hand, it’s a relief because you can finally take action. On the other, endometriosis can feel overwhelming. There isn’t enough useful information about it, nothing that encapsulates its all-encompassing nature or defines the all-involving path to recovery—except this book, which is mind-blowingly relatable, relieving, and helpful.