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 © HarperCollinsPublishers 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

Dedication

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

Contents

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

Foreword

Bojana Novakovic

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.

Endo doesn’t just affect the pelvic region. The body’s response to the inflammation it causes sensitizes the central nervous system, and if you don’t know what’s going on—as I didn’t—this sensitization fucks with your head. If your head’s not right, there’s a good chance you’re in distress. This is where endo crosses the line from a physical ailment to an emotional one too.

On the physical level, learning to live with the pain during most of my adult life compromised my pelvic floor. Without knowing it, I was compensating for the movement of organs over decades and developing postural habits to avoid painful intercourse. At the same time, I was also putting up with excruciating periods and bowel movements, chalking it up to the fact that I was a busy, stressed, ambitious person.

By the time I met Dr. Orbuch, I was at my wit’s end. But being able to talk with her, to ask questions and receive answers, was the beginning of a new chapter. I never looked back.

First, she asked me to change my diet and start seeing a physical therapist regularly. Let me be honest. I balked. I was a healthy woman who regularly exercised. What difference would a new diet and more money spent on physical therapy make? Let me save anyone from having the same doubts: WHAT SHE ADVISED HELPED! Sticking to an anti-inflammatory, low-potassium, low-acid, dairy-free diet hugely lessened my random pelvic burning and meant almost no pain during intercourse. I didn’t do the physical therapy, because I didn’t believe it would work. That came later. Again, please learn from my mistakes: Do it immediately!

On December 17, 2018, I underwent excision surgery. Four hours and five incisions later, I woke up to discover that fourteen pieces of endometriosis, ranging in diameter from two millimeters to two centimeters, had been pulled out of my abdomen. Endo had grown as far up as my diaphragm. It was so invasive that some implants had obliterated the cul-de-sac between my cervix and rectum, pushing my uterus all the way to the left side of my pelvis. My case is certainly not the worst I’ve heard of, but it explained a lot about the pain and discomfort—not to mention the emotional stress—I’d suffered from for the past twenty years.

Afterward, Dr. Orbuch insisted on physical therapy. Physical therapy is imperative after shoulder, knee, or any surgery. What’s the difference? My body formed physical habits to fight the pain and it needed realignment. My organs, particularly my colon and uterus, had been pushed to places they did not belong. I needed help.

That was when I met Amy Stein. I walked into her office a week after surgery and burst into tears.

“I feel like everything is falling apart and this is never going to end,” I cried as I fell into her arms. “I don’t know why I’m here. I don’t like physical therapy. I can just breathe and meditate through this, my boyfriend is being weird, my whole family is here for Christmas, the pain won’t go away, and every time I think about something I have a surge of anxiety that rushes from my groin all the way up to my heart.” I kept crying.

She hugged me, which I don’t think is required for her job, but I am sure has become a staple of it. She worked on the parts of my body she could at that time, told me this was all normal, and explained the importance of a holistic approach to the recovery. I saw her every week, and she started doing deeper and deeper work. I began implementing her exercises, and slowly, the internal pain lessened. My work with Amy Stein was IMPERATIVE to my recovery. Physical therapy realigned my body after decades of damage.

Two and a half months out of surgery, I was remarkably better. For the first time in more than a decade, I had a pain-free bowel movement during my period. It’s one of those little victories I can’t scream about on the subway, but those of us reading this book will understand. It’s a big deal to take a dump without feeling like a knife is stabbing you through the groin and you want to vomit all over your bathroom floor.

It wasn’t until this recovery process that I realized how pervasive this condition truly is. It affected EVERYTHING in my life. I don’t want to blame it for all my problems, but having a condition you don’t know about for twenty years plays a huge part in making you feel out of alignment, not just physically, but also mentally, emotionally, and spiritually.

It’s simple: To fight this all-encompassing condition, recovery has to be all-encompassing as well.

That’s where this book comes in. It doesn’t just outline a plan to beat endo; it’s also a manual for helping women feel less alone.

I used to be scared of talking about my endometriosis. My greatest sadness, and probably the most costly to my sanity, was this self-inflicted shame. I didn’t know how to talk about what I was feeling without having a name for it, and so I stopped talking about it altogether.

Endo might be an “invisible disease,” but that should not mean that those of us who have it must also become invisible. It’s important to talk about it, to destigmatize pelvic pain, and to look toward solutions. Beating Endo is a way to start that conversation, not just to educate those of us with endo about how to survive it, but also to educate our friends, partners, and families. The more people know, the less stigma there is, and the less stigma there is, the more of us will be able to beat endo.

Foreword

Susan Yeagley

I watched my husband back out of our driveway as our little chestnut-haired boy waved from the back seat of the car. “I’m sorry you are hurting again, Mommy—I’m sorry you have to miss the baseball game,” he said. “We’ll call you when the Dodgers score.”

And just like that . . . the car made its way down the cherry-blossomed street without me, once again.

I kept waving to my son and husband, while desperately clutching the bright red hot water bottle tucked into the waistband of my sweatpants. It was another month and another horrible, terrible, god-awful menstrual period.

I had become so reliant, so sickly dependent, on my almost a dozen heating pads and water bottles, I couldn’t imagine going anywhere without them. They provided temporary relief from my painful cramps but couldn’t soothe my confused head and broken heart. I was sick and tired of hurting. How many more games, practices, ski trips, teacher conferences, birthday parties, weddings, and date nights was I going to miss from this otherworldly pain? Was there no end to this torture?

At forty-seven years old, I was turning into the frog submerged in boiling water. The frog sits and sits as the heat is turned up 5 degrees every day until one day it realizes it’s about to become the soup du jour.

Like the frog, I just kept rising up—raising the ceiling for dealing with my pain until I was absolutely boiling over.

My rock bottom came when I was driving my mom and son around Melrose Avenue in Los Angeles. We’d just finished a cake-decorating class and were reliving every delicious detail. As we laughed and joked about our fondant and icing trays, I suddenly felt a strong jolt in my right side. Holy God! This was debilitatingly painful. Like a fierce electric shock.

I had to pull over, stomach throbbing, because of an INSANE amount of pressure in my right abdomen. Yanking the car over to a side street, I hobbled out and collapsed in the grass of someone’s front yard. It was a small, beige-brick 1970s house. I couldn’t help but look in the window and see a nice family sitting down to a chicken lunch. I was wiggling in their front yard, ten feet away from where they were eating. They stared at me in horror—like I was a crazy person.

I grabbed my stomach. Something was bursting in my right side and I could not breathe. I was so embarrassed but in so much pain. My mom ran over to me, and through a panicky breath said, “Come on, honey. I’m driving you to the emergency room. Cedars is five minutes away.”

When I called my ob-gyn to tell her that I was once again hospitalized for another erupted ovarian cyst, she said, “Susan, have you had enough? Are you done?”

I love you, Maria, for saying that.

Yes. Yes. Yes. I was done, but why was this happening? My ob-gyn had operated on me six years before when another ovarian cyst erupted. She cleaned up my ovary and removed more potential cyst tissue. I thought that was the end of my pain, but it wasn’t.

The last ER visit was my final straw. I sat in my ob-gyn’s office and had a complete meltdown. “What do we do? What’s wrong with me? Why does this keep happening?” I begged for clarity, tears streaming down my face.

My ob-gyn did her best to answer my questions but recommended I talk with an endometriosis specialist. She referred me to Dr. Iris Orbuch. “Dr. Iris is the best person to see about endo,” my doctor said. “This is her practice’s entire focus.”

Little did I know that this conversation would ultimately save my life.

Two weeks later I was sitting in Dr. Orbuch’s Los Angeles office. For the first time in decades, I felt like I was going to be okay.

The first thing I learned from Dr. Orbuch was that endometriosis is incredibly difficult to diagnose. Many women begin to develop symptoms in their teenage years and spend their lifetimes in enormous pain, even risking infertility.

Traditional ob-gyns are trained to deliver babies and give Pap smears, so the mysterious workings of the beast that is endometriosis often fall through the cracks. Simply put, lots of doctors just don’t know about it because it’s so difficult to see.

But Dr. Iris Orbuch promised me that I would get my life back. And she was 100 percent right.

My surgery lasted close to four hours. Mine was a very severe case; endo had spread all over my ovaries, ureters, colon, and fallopian tubes.

Less than six months later, I was absolutely TRANSFORMED. My husband and child hardly recognize me now. I skip around the house, cook a mean lasagna, and have absolutely zero pain. I’m outside kicking soccer balls with my boy, at every one of his basketball games, and I’m the first one to stand up and do the wave at Dodger Stadium. I am free. I am brand-new. I don’t hurt anymore. I’ve donated my dozen heating pads and hot water bottles to the neighborhood yard-sale bin. Finally, I can live my life to the fullest.

Here are some life-altering facts that I learned from Dr. Iris:

Women are told we should be tough and that periods are painful so we should just grin and bear it.

Women are made to feel crazy and are deemed “too difficult” for complaining about period pain.

A period is NOT supposed to knock you out of your life.

1 out of 10 women suffer from endometriosis. That’s approximately 176 million women worldwide.

In the end, I was lucky. I’ve lived the California lifestyle for over thirty years, eating healthy—kale smoothies for breakfast—plus doing an hour of cardio a day, followed by meditation. I’m very aware of the mind-body connection and always sought out a holistic view of health and aging. It’s why I was completely floored when I found out I had an advanced case of endometriosis. How, after all those gluten-free muffins and uphill sprints, could I still get this outrageously painful disease? What’s the point of attending to my health if I’m just going to end up on a cold operating table?

The answer is that all that good nutrition, regular exercise, and daily meditation—all that healthy living—got me up off the operating table faster. My body was primed when I went into surgery—primed to take the hit and bounce back. Four evenings after my radical hysterectomy, I was sitting at my favorite restaurant in Malibu eating California rolls. I was truly astonished at how much better I felt. No more pain. My lifestyle made it possible.

I would tell someone suffering from endometriosis to make changes NOW to support your mental and physical health. Go to physical therapy, visualize how you want to feel before and after surgery, meditate, eat colorful, life-affirming foods. Cast a large net to boost and support optimum health before and after surgery. Life is just too short to suffer from this crippling disease.

Introduction: Beating Endometriosis

Remember the first time you heard the word endometriosis?

As with any new word—especially one so multisyllabic—you probably tucked it into your brain and forgot about it, until suddenly it seemed you were hearing it everywhere. Maybe a friend said it ran in her family. Or another friend said her physical therapist thought it might be the cause of her pelvic pain. Or someone said her urologist told her to ask her gynecologist about it. Somebody somewhere even said that her nutritionist mentioned it.

Then a few celebrities announced they had it, so for a couple of days, it was in the news and in the blogosphere—the latest social media meme. The sudden attention unleashed a volley of pronouncements: Endometriosis is all about bad cramps . . . Birth control pills cure it . . . Surgery cures it . . . Only a hysterectomy can cure it.

All untrue, by the way.

Yet despite all the mentions and myths, we’ll bet you nevertheless will be shocked to learn that endo, as it is routinely called, is estimated to affect one-tenth of all the girls and women on earth.

Think about that. The next time you’re walking along a crowded sidewalk, or are on a bus, or are part of the audience at a movie or concert or some other event, look around you. Pick out the first ten females you see and tell yourself that one of them is likely to suffer from endometriosis. Her suffering might range from mild discomfort to intense pain, from an occasional nuisance to chronic agony, from something she can put up with to something that stunts her life.

What is this disease whose symptoms attract the attention of urologists as well as gynecologists, acupuncturists, pain psychologists, and specialist surgeons, a disease that wears so many different hats and shows up in so many different forms? Since it is known traditionally, if at all, as a “female disease”—and therefore is not much discussed except in whispers—why is a nutritionist talking about it? What do muscle pain and physical therapy have to do with it? And if it does “run in the family” and is therefore genetically transmitted, doesn’t that mean that one in ten of us are just destined to get endometriosis and can’t do much about it once we do?

No. We can answer with certainty that while endometriosis can indeed be genetically transmitted, many other factors may influence its development, and whatever the cause, there is a great deal you can do about the disease. That is what we will tell you about in this book, in which we will arm you with the most powerful weapon you can wield to beat this disease and live the life you deserve—namely, the knowledge you’ll gain in the pages that follow. Understanding the disease—knowing what you’re up against—is crucial to beating the disease. It’s the starting point.

We are a gynecologist and a physical therapist linked by a shared and passionate commitment to caring for the women and girls who suffer from endometriosis. We came to this shared commitment from different healthcare specialties, as you can see from the initials attached to our names, and we arrived at it from different beginnings and along different paths. Pretty much from the start of our careers as medical doctor and doctor of physical therapy, each of us found ourselves caring for female patients whose symptoms ranged from pelvic pain to abdominal bloating to painful periods to diarrhea or constipation to fatigue and depression to infertility. Not particularly unusual in either practice, yet in too many instances, the ailments did not seem to yield to the standard treatments our specialties prescribed. And while each of us focused intently on doing whatever we could with the expertise we possessed, we sensed there had to be more we should be doing if we were to achieve a comprehensive cure. Patients got better. Substantially better. Often vastly better. But not 100 percent better.