BEATING ENDO

How to Reclaim Your Life from Endometriosis

Dr Iris Kerin Orbuch

Dr Amy Stein

Copyright

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.

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First published by Thorsons 2019

FIRST EDITION

© 2019 Iris Kerin Orbuch and Amy Stein

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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.

Until, drawing not only on our own expertise and experience but also on that of scores of other practitioners, we devised a multifaceted and integrated approach that beats the disease known as endometriosis, an approach that gets past precisely what was afflicting these patients. The approach does not cure endometriosis; there is not yet a known cure. But it does empower those who have the disease to keep it from taking over their lives so they can reclaim the quality of life they want and deserve.

We don’t remember precisely when and how we first connected across the gap between our separate professional silos. It’s a bit puzzling because the healthcare community in New York City, where both of us began our careers, is still a closely defined world in which practitioner names are exchanged swiftly and easily along lines of shared professional focus. We suspect that we might have been introduced to or encountered each other or at least have noted each other’s name tags at a large and busy conference about pelvic pain, a key marker of endo. Or it’s possible that a colleague known to us both suggested a patient referral to the other—a sort of secondhand and oblique connection.

But however vague its origins, what forged the connection could not have been more compelling. By the time we did finally find each other, the suffering that endometriosis caused in our patients was very much on both of our minds, and each of us had concluded that a new and more comprehensive way to confront this disease was needed.

Our individual journeys to this conclusion help explain how we were able to create the integrated, multimodal approach to beating endometriosis that is the focus of this book. It’s a pair of stories worth telling.

THE GYNECOLOGIST

Iris is the daughter of a cardiologist father. Medicine as a calling was no abstraction when she was growing up; it was more or less the air she breathed. From watching her father at work, she learned what became a mantra for her own future practice: first listen, then examine. Hear what the patient is telling you, then probe the body.

Iris carried the mantra with her through college and medical school to her residency in obstetrics and gynecology at Lenox Hill Hospital in New York City. Along the way, she married a fellow gynecologist, and she had her first child, a daughter; a second daughter would follow three years later.

Meanwhile, her residency completed, Iris went on to a fellowship in Advanced Laparoscopic and Pelvic Surgery with Dr. Harry Reich and Dr. C. Y. Liu, pioneers in endometriosis excision surgery. It was an incredible opportunity to work in their technologically advanced operating room, but what made the fellowship really special was the tutelage of the two men who had made significant advancements in the minimally invasive procedure that is the only proper treatment for the disease—excision surgery that cuts out of the body the misplaced tissue that caused the endo and confirms the presence of the disease. Reich and Liu mentored the young woman who shared their passion for the surgery they had perfected. Like her father, they listened closely to their patients. Sitting beside one or the other of them day after day as they heard patients tell of their pain and indeed their fears became for Iris an unforgettable introduction to the very real suffering that endo inflicted.

In 2005, Iris began her own practice, often operating along with Dr. Liu in those early years. Like her mentors, she made excision surgery her signature procedure, and as both they and her father had taught her, she spent whatever time it took to listen to her patients. The more she heard about their debilitating pain, overreliance on opioids and other painkillers, bladder and bowel ailments that seemed never to go away, pain during sex, depression—and sometimes all of those things together—the more she committed herself to doing whatever it took to restore their quality of life.

The issue became even more pressing when Iris read about a study¹ that had tracked the long-term progress of women who had undergone excision surgery. The finding that particularly resonated was an almost passing remark in the discussion that even after “meticulous removal of all endometriosis,” a number of patients continued to be “symptomatic.” The removal of the endo tissue was not, as both patients and doctors had hoped, a complete cure. Instead, noted the study, “another cause of (a patient’s) pain should be considered.” To Iris, this statement struck a chord, prompting her to consider whether surgery alone was enough; perhaps more was needed if these patients were to regain the quality of their lives.

The study ignited Iris’s intellectual curiosity even as it touched a deep emotional chord. The question seemed simple: What was keeping these women from getting 100 percent better? What was the final piece of the puzzle that would return them to the kind of robust vigor and well-being their age and their dreams required? The medical literature offered no answers, while research findings reported at medical conferences focused on technology and drugs—and seemed to Iris to miss the point. She reviewed patterns of symptoms that her patients told her kept recurring—rectal spasms, shooting pains down the legs, pain after sex that lasted hours and sometimes days and ultimately produced anxiety and depression—but was unable to uncover any explanation. The question haunted her. Despite all the firepower being aimed at endometriosis, why were women still suffering?

THE PHYSICAL THERAPIST

At a similar point in her career, Doctor of Physical Therapy Amy Stein was asking herself the same question, arrived at along a somewhat different trajectory. As a little girl growing up in a suburb along Philadelphia’s Main Line, Amy thought she might like to become a veterinarian one day. College changed all that; by her own count, she went through five majors, eventually getting a degree in Spanish literature before going on to a master’s in physical therapy. The doctorate took a little longer, thanks to her giving birth to two kids two years apart, and to her expanding medical practice—she opened her first private office in 2003, her second in 2018—and her growing prominence as a pioneering expert in addressing pelvic pain through biomechanics, manual therapy, and stretching and strengthening exercises.* Yet from the vantage of that expertise, she found herself puzzled by a particular group of patients whose pain did not improve further once they had reached a certain plateau.

* Amy is the author of Heal Pelvic Pain, published in 2008 by McGraw Hill; she has served since 2008 on the board of the International Pain Society and as its president in 2017.

Like Iris, who flouted much of standard medical practice by spending all the time needed to listen to her patients—well over the times “assigned” by insurance or hospital guidelines—Amy began her therapeutic approach by considering the whole body. To Amy, that meant hearing and, as physical therapists do, literally touching a patient’s pain.

But also like Iris, Amy found herself perplexed by the group whose progress seemed to slow and then virtually come to a halt once they got past a particular point. She was disheartened too by the misdiagnoses and subsequent medical mismanagement she observed in so many of those patients. Most had been referred to her following considerable time in treatment by urologists, gynecologists, colorectal specialists, gastroenterologists, or orthopedists; some of them had undergone surgery—sometimes unnecessarily. Many had been diagnosed with irritable bowel syndrome or interstitial cystitis, as it was then called—painful bladder syndrome as it is better known today—or with urinary dysfunction or just with pain. Some had been told they had a mental health disorder. Many had been prescribed unnecessary medications that resulted in greater dysfunction, and far too many had been prescribed opioids that had brought minimal and temporarily relief at best—and which became problematic in other ways.

Certainly in most of the cases referred to Amy, whatever the cause, the biomechanics of the patient’s pelvic area had been adversely affected. Amy’s treatment of manual therapy, stretching, and strengthening—plus nutritional support and other self-care practices—did mitigate these patients’ pain and bring them relief. But among the women in this particular group, the improvement they realized through physical therapy then leveled off; they simply stopped advancing. The very question that Iris was asking herself hung in the air for Amy as well: Why weren’t these women getting 100 percent better? What was keeping them from advancing past the plateau? Patients would arrive at her office ranking their pain as 8 or 9 on a scale from 1 to 10—where 10 is the worst pain conceivable—and in time, the PT and behavioral changes brought it down to anywhere from 4 to 2. But it seemed that nothing she tried with these patients could eliminate the pain entirely. In her own eyes, Amy wasn’t achieving the complete healing she wanted for them.

She was haunted by the memory of a 2005 meeting in Sydney, Australia, of the International Pelvic Pain Society (IPPS). Dr. Fred Howard, a prominent American gynecologist and a co-founder of IPPS, was giving a presentation to an audience of other gynecologists, urologists, physical therapists like Amy, nurse practitioners, and primary care physicians. The heart of his talk was a deck of slides showing different conditions in the pelvic area. “Raise your hand if you think what you’re looking at is endometriosis,” Dr. Howard instructed his audience. The pictures varied; some looked perfectly bland, some troubled. In all, some 15 to 25 percent of the audience raised their hands at some of the slides, yet all of the slides in fact pictured endometriosis at different stages of progression. It meant that 75 percent to 85 percent of the specialists and practitioners in attendance got it wrong or simply did not recognize what they were looking at. “Endo is being misdiagnosed,” Howard concluded, and he added, “We have to make a change.”

For the attendees at the conference, that presentation also made it clear that endo could only be reliably diagnosed via biopsy. The change Howard was calling for was for the practitioners in the audience to keep endo in mind when coming up against a puzzling condition in female patients—especially if the condition proved intractable and was related to their menstrual history.

Amy had for some time suspected that a number of these patients she was seeing might have endo, especially those patients who were frustrated by the recurrence of their pain, or by the fact that the physical therapy relieved certain symptoms while others persisted. She concentrated on making a concerted effort to raise the endo issue in reaching out to other practitioners. By now, in order to confirm the diagnosis of the condition, she was referring patients almost exclusively to the small handful of gynecologists she was aware of nationwide who seemed to understand endometriosis. At the same time, to address the pain in those patients who had plateaued in their treatment, she referred them on to the equally minuscule number of physiatrists she was aware of at the time—specialists in physical medicine and rehabilitation aimed at restoring function in the case of a disabling or chronic impairment. She kept making connections among these practitioners, introducing herself, via email or in accompanying a patient to a doctor’s appointment, representing herself as a member of the Board of the International Pelvic Pain Society and asking to chat. She wanted to be sure there was a meeting of the minds before she referred patients onward.

TEAMING UP

We think that Iris received one of those emails and replied right back that she was convinced that physical therapy was a “huge missing link” in the whole pelvic pain/endometriosis picture. We think that is what brought Amy into Iris’s office one day to talk about the work she was doing, the results she was seeing, and the limits she came up against. What we both know is that not too long into our conversation, light bulbs lit up in both our brains. Here was a kindred spirit—a practitioner on the same wavelength and asking the same question about far too many women who were not getting better and who very likely, in both our views, suffered from endometriosis.

From Amy’s point of view, Iris was one of perhaps a handful of surgeons throughout the United States who did not think surgery was the immediate go-to solution for the pain and discomfort she witnessed in her endo patients. At last, here was a New York City medical expert—a prominent specialist in endo—who took a holistic approach. From Iris’s point of view, Amy was a practitioner who actually brought pain relief to endo sufferers through PT techniques that managed the biomechanical and tissue dysfunctions, through basic nutrition, and through other forms of self-care—without drugs—and who understood that more was needed.

She gets it! Iris decided. So does she! thought Amy. In a kind of mutual relief, a professional partnership was born.

We had and have a lot in common in our personal and professional lives, but what binds us together absolutely is this shared passion for caring for women with endo. We have seen how the disease can sharply limit the scope of a woman’s capabilities, curb her physical activities, restrict her opportunities for work and school and play, burden her spirit and emotional well-being, blunt the pleasure or satisfaction of daily life with family and friends, and diminish the most physically and mentally robust decades available to her.

Starting in about 2010, we began to mesh our specialties and to expand our portfolio of therapeutic resources. Our aim was first to understand the disease process in greater depth and detail, then to create an effective approach to dealing with it. We constantly talked to each other about what we were seeing and about what worked and what didn’t work to bring relief. And we reached out to practitioners and researchers across the healthcare spectrum, exploring what they were doing that was pertinent. Their input became part and parcel of the integrated approach this book presents, and you will hear directly from a number of them in the pages that follow.

We also will take a closer look at the impact the disease of endometriosis can have on a woman’s life. We’ll note the treatments typically offered by a fragmented medical profession that often sees only through its separate specialties and fails to look at the whole patient, and we will show you why so many of those treatments fail to provide sustained relief.

What we’ll arrive at instead is an integrated multimodal strategy that will equip you with the knowledge you need to begin to beat endo and reclaim your life. By “multimodal” we mean that our protocol comprises different actions; by “integrated” we mean the actions are purposefully linked in an individual “set” or “arrangement” that is right for you. It includes, when needed and at the right time in your treatment process, the excision surgery that is the sole known method for removing endometriosis from the body.

While we are both sympathetic to the contemporary reader’s tendency to jump to the chapter that seems most personally relevant, we urge you to read the chapters of Beating Endo in order. Understanding the full implications of what this disease can do is the first essential for beating it, and that understanding unfolds almost as a narrative. At the same time, we put in your hands the tools to combat every theft of life endo represents, and we show you how, if you use the tools right, you can take back your life from the disease and live it to the fullest.

Our own bottom line is that no girl or woman need feel that she is defined by her endometriosis, nor should any girl or woman be robbed of her strength, her comfort, her joy in her own body, and sometimes her fertility by this disease. This book is our prescription for ensuring that.

1
What Is Endo?
The Disease Process of Endometriosis

The endometrium is the lining of the uterus. In an estimated 176 million women worldwide, cells similar to those in the lining of the uterus are found outside the uterus. In these women, the presence of those cells where they don’t “belong” distorts the body’s anatomy, ignites an inflammatory response, and increases the likelihood of autoimmune dysfunction and disease. The result can be a process of progressively accumulating symptoms—although it may not be; there are women with endometriosis who never know it and are never affected by the pain it can cause.

But if those cells outside the uterus do initiate such a process, the progressively accumulating symptoms can be wide-ranging. This is because the inflammatory response sets off cascading chain reactions of localized and downstream effects that impact the normal physiological functioning of the body. This is one of endo’s distinctive traits. Its varied “spin-off” ailments affect so many of the body’s systems: interstitial cystitis/painful bladder syndrome, pelvic floor dysfunction, irritable bowel syndrome, sensitization of the central nervous system, not to mention anxiety and depression from the physiological changes and the pain they bring—sometimes to the point of debilitation.

As a result, a woman with endo may see a range of specialists and receive a range of diagnoses, along with prescriptions for medications or procedures that bring no lasting relief. She is equally likely to undergo tests that return a finding of “normal” even though the woman lives every day in pain and discomfort, or to receive a puzzled non-diagnosis—remember the 75 percent to 85 percent of doctors at Amy’s meeting in Sydney who didn’t know endo when they saw it?

Maybe that’s why medical schools typically have given it short shrift. If you can’t see it and you can’t measure it, it’s hard to teach. And with a lot of medical insurance plans holding doctors to a standard fifteen minutes of one-on-one consultation per patient, maybe there’s just not enough time for even the most compassionate of physicians to dig deep into understanding what might be going on inside a female patient’s body. Let’s face something else as well: The fact that it is exclusively a woman’s disease may be part of the problem. It is perhaps why, in March 2017, the then-president of the American College of Obstetrics and Gynecology could report that “63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.”²

It is estimated that from seven to as many as twelve years pass between the onset of endo symptoms and its proper diagnosis, during which time the woman or girl with endo may undergo a range of treatments, some of them ineffective, some of them with side effects that outweigh their benefits. We both have seen women who had been prescribed multiple different narcotic pain medications, others who went through gynecological, gastrointestinal, even orthopedic surgeries that brought neither relief nor respite and that turned out to be needless traumas to the body.

So we are left with a great many women afflicted with endometriosis who simply do not know they have it, and with a great many others who assume it is just something they must put up with—part of the price of being female, nothing specific to put a name to. To a great extent, therefore, endometriosis remains something of an enigma—a disease afflicting millions that nevertheless resides in the shadows of medical science.

What is well known, however, especially by those who suffer from endo, is what it can do to the lives of the women afflicted with it. We know it too. We’ve seen it up close and personal. As caregivers, as women, as mothers of daughters, we can’t help but feel directly affected by the suffering we witnessed.

If you have been diagnosed with endometriosis, or if you suspect you may have it, you should know that a positive diagnosis is possible only via analysis of excised tissue; it’s what the medical profession calls “pathological confirmation.” Short of that, there is as of yet no other test to confirm the presence of the disease—no image, no scan, no sampling of fluids. (In chapter 2, however, we will discuss some important signals every woman should pay attention to.)

For many women but not for all, the principal and defining symptom of endometriosis is pain. In some, the pain is minimal or intermittent or even inconsequential. There are also women who are discovered to have endo lesions—the visible evidence of the disease’s damage that surgeons like Iris can see laparoscopically and excise—but who experience no symptoms and feel no pain at all. In too many women, however, the pain may be anywhere from difficult to utterly incapacitating.

Unlike so many other medical “conditions,” the pain of the endo disease process does not progress in incremental steps from A to B to C to D, where A is uncomfortable, B is pain, C is worse pain, and D is disabling pain. An endo patient may experience all of those levels of pain, but it isn’t always because the disease is getting worse. It may also be that the disease is affecting so many of her bodily systems concurrently.

Ask a woman with endo where and when her pain occurs, as we do, and she will locate it just about everywhere and at any time: around the lower abdomen . . . in the back . . . deep in the pelvis . . . on the right side . . . on the left side . . . worse during her period . . . worse during ovulation . . . worse all month long . . . worse before her period . . . worse after her period . . . in the rectum . . . down the legs . . . up the vagina . . . during sex . . . after sex . . . around the ribs . . . up into the diaphragm . . . during bladder and bowel functions . . . in the groin area . . . hard to pinpoint . . . everywhere . . . most of the time . . . all of the time. Some describe the pain as acute, catching them unawares, without warning. For others, it is a persistent presence. We’ve heard the pain described as knifelike, a feeling of heaviness, a hot poker, sharp and radiating. Like lying down on a bed of thistles. Can’t find a comfortable position for sleeping or sitting. Can’t lift my body out of bed. Can no longer imagine what it would be like to live without pain.

The variety of the definitions and descriptions, the potential ubiquity of the pain, and the lack of consistency between the intensity of the pain and the stage of the disease process or the “amount” of endo found are among the reasons this disease is so puzzling. For healthcare practitioners confronting women afflicted with endo, the puzzle turns this disease into a chameleon, one that changes its identity depending on which particular symptoms are presented and, given the highly fragmented nature of our super-specialized medical system, on which specialty is doing the looking. The same complaint can appear very different to a urologist, a gynecologist, an orthopedist, or a physical therapist, each of whom is likely to prescribe his or her own specialty’s standard treatment. We call it “misdiagnosis roulette”—well-intentioned but confusing and ultimately both ineffectual and injurious. Talk to a urology specialist about bladder pain and she or he might plausibly diagnose interstitial cystitis/painful bladder syndrome or recurrent urinary tract infection and prescribe treatment accordingly—all too often, antibiotics. A gynecologist hearing a patient’s symptom of painful sex might explore a range of causes—from a sexually transmitted disease to menopause, with a different set of treatments for every possible cause along the way. And for back pain, you’re likely to be prescribed painkillers until the pain finally sends you to an orthopedist, who might recommend physical therapy for the back or even suggest surgery. Yet endo can encompass all of these separate conditions—and more—and you might undergo a series of interventions and take a range of prescriptions, month after month, year after year—to little avail.

That is typically what happens during those nearly twelve years between the onset of endo symptoms and its proper diagnosis. Twelve years is a long time to be in pain or discomfort, and it is a long time to be without an answer, without a plan of action, and without hope of a resolution. Why is this disease so difficult to diagnose? How does it happen in the first place? Why does it miss most women yet hit some women so very hard?

The truth is, when it comes to endo, the medical community has more questions than it has answers. But the one thing we are pretty certain of is that the lesions Iris finds when she operates on endo patients are the pathological consequences of that disease process that is set in motion when cells similar to those of the uterine lining grow outside the uterus. Since they’re not supposed to be there, this prompts an inflammatory response, more or less the way any anomaly—an injury or an infection—prompts such a response as a defense mechanism. It’s a little like what happens when you scratch your skin with a fingernail; whatever your pigment, the color of the skin at the spot you scratched turns a different shade. That’s basic; it’s Biology 101.

We also know what happens when cells form in the uterine lining because it happens on a cyclical basis, as all women are reminded once a month. Your ovary releases an egg and sends it toward the fallopian tubes. Hormones stimulate the uterus to thicken its lining in anticipation of the possibility of fertilization. But when sperm fail to fertilize the egg, the egg simply dissolves, and the uterine lining, along with some blood, flows out of the body—i.e., you get your period. All of this too is basic. It’s Procreation 101—how the species keeps going—and most women’s bodies are equipped to undergo this chance at fertilization every twenty-eight days or so, year after year from the time of our first period as a young girl until we age into menopause (except during pregnancy, of course).

The cells that are found outside the uterus are also stimulated each month by the same hormonal cycle. But these cells have nowhere to go; there is no exit point for them, so they get thicker and thicker month after month. In time, they distort the surrounding anatomy, and this can cause the organs in the area to stick to one another—the rectum to the uterus, for example. In women in whose bodies this process is taking place, the mechanism for clearing out the cells has altered in some way and fails to work. The cells accumulate, month by month, year by year.

Nor are endo implants limited to the vicinity of the reproductive organs. They can be anywhere—the lungs, the diaphragm, anywhere. Iris knew of a patient who suffered nosebleeds at every period; her endo implants literally were in her nose.

While we don’t know exactly why these cells grow outside of the uterus, research suggests that there are both genetic and environmental factors that can put a woman at increased risk of developing the disease. If your mother, sibling, aunt, or grandmother—via either the maternal or the paternal line—has or had endometriosis, you have a sevenfold to tenfold greater chance of developing endo than the rest of the female population. That’s the genetic factor in spades.

Other research, in the form of fetal autopsy studies, shows that an estimated 9 percent of female fetuses have endometriosis.³ The suspicion of the scientists who performed this research is that either the fetuses inherited the endo cells from their mothers (the genetic factor) or that the fetuses were exposed in utero to a family of chemicals called dioxins (this is the environmental factor). Dioxins are highly toxic compounds found both in the food chain and in by-products of household and gardening or “lawn care” products, and they have long been identified as a cause of endometriosis. If a mother is exposed to dioxins while pregnant, her fetus is exposed to their damaging effects as well.

Meanwhile, the process continues. The consistently thickening endo cells take on a life of their own. They need blood to grow, so they keep on increasing their blood supply. They also go deeper as they grow, and as Iris explains it to patients, they act like Velcro, adhering to whatever is adjacent: the bowel, the bladder, the ovaries, the fallopian tubes. And since each monthly hormonal stimulation continues to fuel endo’s growth and expansion, there’s no stopping the process until a surgeon like Iris excises the endometriosis that is now thoroughly implanted in the body.

Given the average twelve-year period between onset of symptoms and diagnosis, consider the potential extent and severity of your endo by the time you receive that diagnosis. If your endo originated during fetal life, those implants have been growing inside you for a long, long time, during which your body kept on adjusting to their presence. Maybe when you began to menstruate, your cramps were so painful that you had to visit the school nurse’s office and ask to lie down—the likely onset of symptoms. If that set you apart from most of the other girls in your class—and made the school nurse suspect you of being overly dramatic—you probably still didn’t suspect anything wrong, especially if your mother told you she suffered similarly agonizing cramps and said it was just “something we have to put up with.” So perhaps it wasn’t until as a young woman you confronted pelvic pain, or pain during sex, or infertility, that you began to seek “serious” medical attention. By that time, the endo implants had been growing inside you maybe for a couple of decades, initiating symptoms that appeared to different specialists at different times as different conditions. Undoing the impact of the disease at this point would be no small undertaking.

And it isn’t just the implants themselves that cause harm. It is their impact, multiplied as they grow and expand over time, on the central nervous system. As the thickening implants gain increased blood supply, their nerve density also bulks up. More nerves means more sensory messages being transmitted to the central nervous system. More messages being sent trigger more receptors to respond, further sensitizing the nervous system. Each response sends out its own message of stimulus, so there are now more nerves sending more sensory messages. This process essentially becomes a self-sustaining feedback loop in which the number of messages and responses continues to increase, and the scope of sensation continues to expand. The medical term for this “loop” is called upregulation—a process of stimulus and response that just keeps amplifying.

In due course, nerves carrying these sensations of pain overwhelm the central nervous system, which eventually becomes so upregulated that it hits an overload alert. And since those overload messages have to go somewhere, they branch out via the spinal cord to other available pathways. What started as the irritation of a single organ in one part of your body now spreads to other organs, muscles, and nerves in any number of locations. In other words, what starts as a small trigger can result in maximum perceived pain. Physical therapists like Amy are very familiar with the impact of this cross-organ sensitization. They know all about the effects of what they call “viscero-somatic and somato-visceral cross-talk”—organ-to-body and body-to-organ “conversation”—when muscles react reflexively to some ailment or disease condition that starts in one area of the body and moves to others.

The result of this cross-talk and of all the physiological changes brought about by the inflammatory process is what we call the co-conditions of endo—all too often, a cascade of coexisting conditions: interstitial cystitis/painful bladder syndrome, muscular pain radiating outward and upward and downward from the pelvic area causing pelvic floor dysfunction, gastrointestinal ailments leading to a likely diagnosis of irritable bowel syndrome or small intestinal bacterial overgrowth (SIBO) or both, a revved-up central nervous system—until the whole body feels as if it is on fire.

While the expansiveness of endo can feel debilitating for patients and can be confounding for doctors, the reality is that the way this disease manifests itself makes perfect sense. After all, the body is an interconnected network. Our medical system is divided into separate areas of study and treatment, and so we speak of separate organ systems, but that is just the expedience of jargon; of course there are no walls separating the systems of the human body. In fact, researchers are gaining more and more insight into the various mechanisms that mediate all the many interconnections in the body. What happens in one part of our anatomy often has repercussions throughout the body.

Remember learning about fascia back in high school biology class—the weblike connective tissue under the skin that more or less structurally supports the muscles and internal organs? It’s like plastic wrap—very supple, totally pliant, but a completely connected net. Pull at the wrapper here, and the effect can be realized somewhere else, far from where you pulled. To see what we mean, take a piece of plastic wrap and wrap it around a smallish object like an apple. Then gently pull on one corner of the wrapper and just twist. The whole piece gets pulled out of shape. That’s what the fascia does: one little pull, and everything is affected. In the body, a disease response in one part of the anatomy can send ripples of impact across far-flung other parts of the anatomy.

One very practical and probably recognizable example of this chain reaction is what happens when you have constipation—a common issue for women with endo. In many such women, it is likely that an endo implant on or adjacent to the bowel has distorted the anatomy, or that the inflammation from the endo has altered intestinal function, or that the nerves growing from the implant are intensifying your distress.

Nevertheless, the body reacts reflexively, as you squeeze and tighten or strain and bear down in an attempt, which is ineffective, to empty the bowel. The muscles you’re bearing down on are all part of the pelvic floor, which, as its name suggests, is like a deck of interconnected muscles, ligaments, tissue, and nerves that sit at the bottom of the pelvis and support the pelvic organs. Because those muscles are all connected, that unsuccessful pressure to empty the bowel can have the effect of making you feel the need to empty your bladder, but you can’t, so you squeeze those muscles even tighter or you strain harder, aggravating the pelvic floor and furthering the dysfunction.

But your pelvic floor isn’t the only part of your body that is affected. All of that tightening—the scrunching of the body into what is effectively the fetal position—can send shivers of muscle repercussion elsewhere. It is the viscero-somatic/somato-visceral cross-talk in action: The body reflexively scrunches into a ball against the pain in the gut, and this scrunching pulls on the abdominal and pelvic fascia and muscles, which in turn forces rounding of the back and tightening and potential shortening of the abdominal muscles and, as the fascia web gets twisted ever so slightly, can affect other muscles in the body.

These multiplying and intensifying co-conditions are a central fact of endo, spawned over time as the central nervous system upregulates hotter and hotter and sends out more pathways of sensitization around the interconnected web of the fascia. The great majority of these co-conditions constitute morbidities in their own right—ailments and disorders with their own names and, often, their own prescribed treatments. They include not just the pelvic floor and gastrointestinal and musculoskeletal conditions, but also the anxiety, depression, and sheer fatigue that can follow as a consequence of the relentless toll of these conditions.

In most endo patients, these co-conditions have developed over the course of several years, if not a decade or more. If these co-conditions accrue so as to upregulate the central nervous system, symptoms are obviously exacerbated. And that, in turn, can obscure the diagnosis for the physician treating the patient. It is one reason that the disease is so baffling to clinicians of every stripe. But these co-conditions also offer critical insight and may provide the key to beating endo.

ADENOMYOSIS: AN ADDED GLITCH

As if all this weren’t enough, it is time to introduce what we might call a “close relative” of endometriosis—namely, adenomyosis. Where endo is defined as cells similar to those in the uterine lining forming outside the uterus, adenomyosis occurs when cells similar to those in the uterine lining form within the smooth muscle of the uterus, as the myo in the name indicates.

Like endo, adenomyosis is hard to diagnose, although it sometimes can be detected via an MRI scan. The problem, however, is that if the MRI does not detect the disease, that negative finding has a 50-50 chance of being wrong. In other words, not seeing adenomyosis in magnetic resonance imaging does not mean it isn’t there. So the MRI is not an ideal diagnostic tool, but it’s the best we have as of this writing.

Detected or not, most women who have adenomyosis also have endo, and the two conditions share many symptoms. It doesn’t work vice versa; that is, it is not the case that most women with endo also have adenomyosis. The particularly harsh afflictions of adenomyosis include very heavy periods, onerous lower back pain, and what patients call a “heaviness” and “pressure” in the pelvis. What the sharing of symptoms means, however, is that both these inflammatory conditions respond to all the therapies and practices you’ll be reading about in this book. The two conditions, endometriosis and adenomyosis, are thus yin and yang—you really can’t talk about one without the other, except when discussing treatment approaches. So it is important, in a book about endo, for you to know about adenomyosis as well.

THE KEY TO BEATING ENDO

Nancy Petersen is a retired nurse and an abiding icon of the movement for endometriosis research and treatment. She herself was a victim of what she has called “the mania of persistent misdiagnosis,” undergoing multiple surgeries that neither ended nor assuaged her pain until she more or less self-diagnosed her endo and set out to change the way the medical community approaches the disease. She is the founder of the Facebook group called Nancy’s Nook, a go-to source of information and a safe space for discussion about endo for, as of this writing, some 61,000 endo sufferers.

Petersen has spoken about the anger and “sense of victimization patients can feel when the system fails them,” and about the need, as she says, to “get past it.” Once you do, she also reminds patients that there is no single magic bullet for endo. “Meds do not treat endo,” Nancy stresses; “they treat symptoms only.” Rather, each co-condition—each generator of your pain, discomfort, or dysfunction—must be addressed with its own treatment plan. For example, “you cannot remove endo,” she writes,⁴ “and expect pelvic floor dysfunction to fully resolve.”

What Nancy says informs our own approach to beating endometriosis—in an integrated, multimodal way. As you go through this book, you will gain the knowledge and understanding that can help you target every single one of endo’s co-conditions—any and all of the multiple generators of pain and discomfort that you may be experiencing.

Next, through physical therapy and changes in lifestyle behavior, you will treat each co-condition so as to cool the body.

This cooling process has the effect of separating out the symptoms deriving from endometriosis from those deriving from the co-conditions. At that point, you should have a discussion with your endo specialist about excision surgery. Meanwhile, you will have effected key behavioral changes that can keep you healthy against a chronic, systemic, and complex disease process.

CHRONIC, SYSTEMIC, COMPLEX

Ever since 1980, when the Endometriosis Association—the nonprofit she co-founded—first reached out to women with endo asking for their complete medical history and that of their families, Mary Lou Ballweg has known that endo is a disease process of the immune system. For more than three decades, the research registry she initiated collected data showing that the families of endo sufferers contain cousins and aunts and grandfathers and other relatives afflicted with allergies. These included such atopic ailments as asthma, a range of cancers, heart disease, and autoimmune diseases like lupus, rheumatoid arthritis, multiple sclerosis, and diabetes.

The research registry was enlightening in other ways. Early on, it disabused the medical community of the flawed belief that African-American women were somehow immune from endo. The medical establishment of the time had tended instead to offer a diagnosis of pelvic inflammatory disease, PID, to black women. PID is a complication often caused by a sexually transmitted disease; the unspoken but stunningly racist assumption was that the underlying cause of the trouble was sexual promiscuity. The registry also undermined another long-held assumption that endo was a disease rampant among thin, nervous perfectionists—the kind of high-powered “career women,” as one magazine put it, who postponed having children or, heaven forbid, simply didn’t want to become mothers.

But that’s the point of research—to identify and, when needed, to jettison dismissive assumptions masquerading as knowledge. And the research-driven, evidence-based fact is that any woman can get endo—without regard to race, creed, color, professional pursuit, or socioeconomic status. Period. That said, Ballweg’s research does suggest that it is more likely to occur in women whose families are prone to autoimmune diseases and/or allergies.

Endo is a chronic illness, and that makes it very much a disease of our time. Up until the latter part of the last century, chronic illness was not top-of-mind when people worried about their health or the health of their families. What our grandparents and certainly our great-grandparents were concerned about was infectious disease. Back in the mid-twentieth century, polio was the scourge that led parents to deny their kids access to the public pool in the summer, and mumps, measles, rubella—the infectious, contagious diseases that could run like wildfire through a classroom or school playground—were the diseases that kept our parents and grandparents up at night. Yet now we rarely hear the words; here in the United States, thanks to the development of vaccines and the implementation of public health policies, these infectious diseases have been virtually eradicated.

What afflicts us today is a whole new “class” of disease, the ailments we see dramatized in endless television commercials from the pharmaceutical industry hawking drugs for heart disease, high blood pressure, diabetes, asthma, digestive disorders, fibromyalgia, arthritis, bone loss, Alzheimer’s, depression, and—starting in 2018—endometriosis.

Despite the fact that they manifest very differently, these ailments have a lot in common. For one thing, they never really go away. In many of them, the intensity fluctuates, so relief often seems temporary. And even the TV ads don’t yet promise a cure (and warn of many, many side effects of taking the drugs to keep these diseases at bay).

What these diseases also have in common is that they are complex. They can exhibit numerous symptoms, and there seems to be no single cause you can identify for the existence or recurrence of your symptoms. They are the diseases we “just have to live with”—until there is a cure or they kill us. By 2011, the World Health Organization could report that what it calls NCDs, noncommunicable chronic diseases, cause more deaths worldwide than all other diseases combined.

Chronic illnesses also tend to be systemic. Most affect multiple organ systems within the body. Look at endo: Its symptoms can range across the reproductive system, digestive system, nervous system, muscular system, skeletal system, urological system, and endocrine system. It is accompanied by the numerous different co-morbidities of body and mind that we have just catalogued. It certainly looks like the endo disease process encompasses a lot of interaction within and among the various organ systems executing their various biological functions.

But how chronic diseases affect people is also highly individual. There are a lot of commonalities among women with endo, but each woman suffers it in her own way depending on her particular physical and biological profile—in effect, on her own genetic profile and environmental exposures.

So it seems clear that to deal with chronic diseases like endo, we need systems thinking and the kind of integrated, multimodal approach we’ll be proposing in the following pages. To a great extent, however, the medical profession is still organized more or less around the infectious-diseases model. In that model, the aim was to find the organism causing the infection and develop a one-size-fits-all treatment—typically a drug—to zap it. This was a phenomenally successful approach, as the eradication of so many infectious diseases proves. But along the way, we got so specialized we stopped being able to see outside our specialty or to think in terms of systems or to look past the general to the highly individual.

That is beginning to change, as we in the health profession try hard to emerge from our isolated silos and look both at the way the whole body works and at the context—the environment—in which it operates. But if you or someone you care about suffers from endo now, you can’t wait for that professional transformation to happen. That is why we will show you how to take charge of your particular endo by addressing its particular complexity—the symptoms you deal with, the co-conditions you experience, the tools your body provides you with not just to manage the disease, but to beat it.

One thing that means is that we will show you how to read your symptoms in terms of your own genetic makeup. This is essential, because the path to diminishing symptoms is through nutritional, lifestyle, environmental actions—all the tools of genetic expression—along with proper endo treatment. The science here is complex, but the takeaway is hopeful and empowering: If exposure to a particular environmental situation or lifestyle circumstance ignites a genetic response that is deleterious or painful to you, no, you cannot change the genes, but you sure as shooting can change your environment, your dinner menu, your behavior.

One of the very first clues to this came from the Endometriosis Association’s research registry. Alongside the finding about the allergic propensities among the families of endo patients was the statistic that 57 percent of women with endo also suffer from allergies—to pollen, plants, foods, perfumes, cleaning products, a whole palette of sensitivities. Moreover, the reactions to pollen, the incidence of asthma, and the presence of eczema were considerably higher among endo sufferers than in the population as a whole. Most significant of all, the research showed that when the allergies were addressed, the women’s endo symptoms also improved.

Does that tell us something? You bet it does. It suggests that women with endo are women with highly responsive immune systems. So it is perhaps not surprising that in 1992, Ballweg herself brought about the research that uncovered the breakthrough connection between dioxin exposure and endometriosis. She had learned by chance about an experiment testing whether exposure to dioxins affected fertility in lab monkeys. There seemed to be a connection, but Ballweg was knocked off her feet when she discovered that two of the monkeys had died of endometriosis, a disease that until then had not been spontaneously created in a laboratory setting. Ballweg sought and procured funding for researchers to probe the connection more deeply. The study she put in motion, exposing a set of lab monkeys to varied doses of dioxins, proved the point. The monkeys developed endometriosis, and those given the highest doses of dioxin were correspondingly most seriously affected. The conclusion was inescapable that “dioxin and other toxic chemicals can cause the development of endometriosis and other health problems to which those with endometriosis are susceptible, including certain cancers, autoimmune diseases, and heart disease.”⁵*

* Adding to the sweetness of having been the prime mover of this important discovery, the icing on the cake for Ballweg was that it happened at her alma mater, the University of Wisconsin, in its Primate Laboratory on the Madison campus.

This doesn’t just mean that endo sufferers might want to refrain from using herbicides on their lawns next spring—dioxins being a by-product of herbicides. It’s a reminder that the way we live, the things we ingest, the makeup and shampoo we use, the choices we make every day can shape the way we feel and the well-being we enjoy—or debase—every day. Beating the disease process of endo also has to happen every day, day after day.

Women with endo have a higher than normal likelihood of developing these autoimmune conditions:

Hashimoto’s thyroiditis

Celiac disease

Sjogren’s syndrome

Multiple sclerosis

Eczema

Rheumatoid arthritis

Systemic lupus erythematosus

Ballweg was a teenager when she first felt the symptoms of what she later learned was endometriosis. She would undergo a number of surgeries for her endo, including excision. But Ballweg is also, by her own definition, “a health nut,” seriously committed to firm practices of nutrition, exercise, and the like—and she believes unreservedly that her own integrated and multimodal program made the difference. Once restored to full health, she formalized the content of that program by creating a protocol that she hoped would help protect her daughter from developing endo. In 2017, Mary Lou and her husband welcomed their first grandchild—a healthy baby girl, born of a healthy mother.

The power to beat endo really is in your hands. We’ll tell you how.

Classic Endo Myths

Hysterectomy is a cure for endometriosis.

FALSE. Hysterectomy is neither a treatment nor a cure. By definition, endo consists of cells similar to those in the lining of the uterus but found outside the uterus; removing the uterus ignores the cells outside. Only surgical excision removes endometriosis cells.

Medical menopause is a cure for endometriosis.

FALSE. Just because your medicines give you hot flashes doesn’t mean your endometriosis is going away.

Teenagers are too young to have endometriosis.

FALSE. Teenage girls can have endo, and their endo can be at an advanced stage.

Pregnancy is a cure for endometriosis.

FALSE. Just no: Pregnancy does not cure endo.

Birth control is a cure for endometriosis.

FALSE. Birth control and other medical treatments treat symptoms only. They do not cure endo; in fact, the endo keeps progressing while you take birth control or other medicines.

If you have minimal endometriosis, you should have minimal symptoms.

FALSE. There is no correlation between the amount of endometriosis and the severity of your symptoms.

Endometriosis is found only in your pelvis.

FALSE. Endo may be found in many areas outside the pelvis. Listen to your body.

Ablation surgery is equal to excision surgery.

FALSE. Not even close. We will explore this more in chapter 11.

All I need is an operation and all my endo symptoms will disappear.

All I need is to become a vegan and all my endo symptoms will disappear.

All I need is to take a few physical therapy sessions and all my endo symptoms will disappear.

FALSE. To beat endo, you need an integrated, multimodal approach—a set of actions.

2
The Goal
Regaining Quality of Life

We all pretty much know what a disease is; it’s a disorder in any living thing that impairs the normal functioning of the area it affects and that may be manifested in various symptoms. But what do we mean when we talk about “a disease process”? It is probably enough to say that a disease process is a disease that keeps going. The impairing disorder with its various symptoms continues, and as it continues, it disrupts the normal functioning of other parts of the body too.

The pain generated by the disease also expands, upregulating an ever-wider range of the central nervous system and bringing pain to more areas of the body. A colleague of ours, urogynecologist Dr. Charles Butrick, the first of the other expert practitioners we promised you would be hearing from in the course of this book, puts it this way: “The longer the pain has been present, the greater the likelihood that new pain generators will develop.” This describes the disease process of endometriosis to a T.

How do you beat a chronic and systemic disease process once it has been set in motion? By setting in motion another process that is equally chronic and equally systemic. That means, simply put, that you must be prepared to address the disease across a number of different organ systems; it also means you can’t assume that having done so, you are also done with this disease. You won’t cure your endo, but you will beat it. And that is how you will regain the life you want and deserve.

Our integrated, multimodal approach is such a process. But because endo can affect individual women in so many ways and at varying levels of intensity, the way you employ the approach will depend on your particular experience. For many patients, excision surgery to rid the body of the endo implants that have been causing pain and dysfunction is key. But surgery does not fully end the pain and dysfunction. Both have been part of your body for so long and have so upregulated your central nervous system that virtually your entire body and in a sense your entire life almost literally resonate with the disease. That is why it is so important to suss out each dimension—each co-condition—of your disease comprehensively and comprehensibly, preferably under the guidance of an endo specialist.

We are all too aware, however, that finding such a specialist can be a challenge. Our friend and colleague Heather Guidone of the Center for Endometriosis Care estimates that as of this writing, there are about one hundred endometriosis specialists skilled in excision surgery across the United States and fewer than one hundred elsewhere in the world. The reasons for these low population figures are fairly obvious: The excision surgery is technically challenging and requires advanced training—well beyond the basic surgeries most generalist ob-gyn physicians master during a four-year residency. The advanced training for endometriosis represents yet more time “in school.”

Still, one of the authors of this book is an endo specialist who went through the advanced training, mastered the surgery, and writes from a deep well of experience and knowledge. So there are endo specialists to find, and probably the best place to find them is on Nancy’s Nook Endometriosis Education, the Facebook group founded by the endo expert Nancy Petersen, whom we met in chapter 1.

Once you’ve found the right specialist, you will need to bring to the discussion all that you learn in this book about the unique multimodal approach we have created—which is not a standard that is typically taught—and then you and the specialist will need to examine in depth what the disease of endo may be doing to you: to your bladder, gut, sex life, and, pervasively, to your central nervous system. We’ll help you with that examination in the chapters that follow. Then you will need to lay out precisely how to combat those symptoms so that you can reclaim your life. We’ll help with that too; it’s what our process is all about. Your endo may be fierce, but it is not beyond your power to tame and control.

Healthcare practitioners like us would call the process a protocol—a plan of actions aimed in great measure at downregulating your central nervous system. The logic of tackling one facet of your endo after another is that downregulating the system even a notch makes you feel significantly better. Feeling better gives you more energy to get stronger, and every advance in strength makes you better able to take on the next condition, then the next, and in time all the other conditions that may be upending your life. Equally important, any additional recommended medical interventions—excision surgery, for example—will work better on a less stressed, less inflamed, stronger, calmer you.

The bottom line on this process of downregulation and up-strengthening is that it will require a number of changes only you can make, for they are effectively changes in your current lifestyle. You’ll almost certainly need to abandon ingrained habits and rethink routines that have become second nature. You’ll have to learn and instill new habits and routines until they become second nature. It will take time. It will take effort. Again, it may require undergoing excision surgery—the one thing you really can’t do on your own—and a process of post-op recovery. It certainly demands commitment. But it’s the way to bring your endo-battered body back to a level of strength and vigor that lets you regain the quality of your life.

How does it work? Meet three women who did it. Different ages, different backgrounds, different experiences of endo, and at different stages of life when they came to our attention and undertook the actions we recommended. But all three committed themselves to it, all three effected the changes needed, and all three have taken back their lives.

Here’s how they did it:

ELENA

At her first appointment, Elena sat across from Iris and announced: “I’ve been told I have stage one endometriosis and I have undergone ablation surgery,” a procedure in which the endo lesions are cauterized—“burned off” rather than rooted out. Elena wanted to know why, after all that, she still suffered what she described as “debilitating pain.”

Iris well knew of course that there is no correlation between the amount of endo in the body and the severity of the pain the endo sufferer experiences. She also knew that ablation surgery is ineffective in ridding the body of endo and may only temporarily—if that—relieve a patient’s pain. Elena had a lot to say about her pain. “I can’t function,” she began. “I can’t go to work.” (Elena was an administrative assistant in a hot-shot investment firm.) “I can’t have sex without pain.” (She was in a long-term relationship with a decidedly supportive man.) “I need to ask my mother for assistance to carry out simple household chores.

“Help me,” she said. “I want my life back.”

Iris began, as she always does, with one-on-one questioning. She asked Elena about her history with endo from the time her pain began—she was a teenager—to the present, age thirty-eight. Patients tend to become downright eloquent when they talk about their pain—especially patients like Elena who have lived with the pain for decades. They are well acquainted with it, and they believe they know everything there is to know about it. But in listening to what a patient says about her pain, the careful clinician needs to pierce that familiarity and draw out of the patient precisely what a doctor needs to know. Iris listened carefully. Then she went deeper.

She asked about Elena’s periods, which both were painful and produced an extremely heavy flow with clots. Elena told of having to leave a party because her menstrual flow soaked through and stained what she was wearing; her partner walked closely behind her as they snuck out as quickly and unobtrusively as possible. The pain, said Elena, was in no way limited to the time of menstruation but was felt at different times of the month. Iris recognized this as standard; the pain of endo can occur anytime.

Next Iris wanted to know about what Elena referred to as “stomach issues.” She had experienced these “issues” since she was a teenager, and Iris elicited from her that she consistently strained when trying to move her bowels and found it painful to do so. She also felt a squeezing sensation around her rectum, and when asked about back pain, said that hers was the result of a childhood softball injury when she triumphantly stole home and stepped down so hard on the plate that she felt it from her ankle to her shoulder. To this day, Elena said, that injury made sitting difficult—especially during the long commute to work. Iris suspected that long-term constipation and straining her muscles in response to endometriosis were really what was at issue in Elena’s pain, not stealing home base in high school.

Iris asked about her urological function, which Elena hadn’t even mentioned, but in response to questions, she told Iris that she got up a couple of times a night to urinate, urinated twelve to fifteen times during the day, and still felt pressure on her bladder. When Iris pressed the point, Elena recalled that she had had five “urinary tract infections,” as she dubbed them, the previous year, even though her urologist told her no bacteria were found in the test.

Moreover, Elena could not tolerate birth control pills, which one doctor had prescribed for her cramps, because they worsened her migraines and she couldn’t bear the pills’ side effects. Also, she had already undergone a full workup by a gastroenterologist, not to mention a colonoscopy, with results that, happily, were totally negative—nothing wrong with her.

There may have been “nothing wrong with her,” but none of the medical treatments she had undergone, including her ablation surgery, had alleviated her pain—no surprise to Iris. Elena was exhausted, and she was becoming depressed.

It was all of this that had finally prompted Elena to seek out a specialist. Her boss, a senior vice president at the firm, had heard about Iris and suggested Elena call. She made an appointment for a “single consultation only,” as she made clear; Elena was pretty sure she wouldn’t be able to afford going out of network more than once.

But she had never had a consultation like this. She had never been asked the kinds of questions Iris asked—how often she urinated, did she ever get constipated, her sex life—and that was before Iris even began to examine her! So she was surprised and extremely interested when Iris told her that the interview alone suggested that Elena was dealing with a number of systemic conditions—urological, gastrointestinal, musculoskeletal—all of which were super-sensitizing and thereby upregulating her central nervous system.

That was just for openers. As Iris went through her physical exam, Elena felt herself being probed carefully from head to toe, a probe that, from Iris’s point of view, confirmed her original assessment. Iris could feel the tightened muscles that told her Elena had abdominal and pelvic floor dysfunction. She noted the thickened ligaments behind the uterus, in the small space between the rectum and the back wall of the vagina and uterus known as the pouch of Douglas; thickened ligaments are a typical clue for endo. The pain that made Elena grunt when Iris pressed on Elena’s uterus confirmed the suspicion that she probably had adenomyosis as well—endo-like cells in the muscle of the uterus. Iris was convinced that Elena suffered both that syndrome known variously as interstitial cystitis or painful bladder syndrome and tight pelvic muscles. It was also possible, she surmised, that in Elena’s case, the endo implants were literally on the bladder.

Physical exam, questions asked and answered in detail, medical history: The aim was to translate a patient’s catalogue of symptoms into an analysis of system dysfunctions. For Iris, it was a way of decoding heavy menstrual bleeding, back pain, constipation, trouble sitting down, and all Elena’s other symptoms into a template of coexisting urological, gastrointestinal, and musculoskeletal conditions. And in its turn, it enabled the creation of a systems-based plan of treatment.

For Elena, learning that what was undermining her life was a panoply of conditions that began with endometriosis and that now coexisted with it was a revelation, but the realization that she needed to treat all of those conditions was a lot to absorb—especially after the false hope of ablation surgery. Yet in a very real sense, Elena was relieved to see this great, huge colossus of unreachable pain broken down into separate systems and into treatable conditions—with a plan for each.

Affording it was going to be tough. At age thirty-eight, Elena was still paying off student loans. She had been the first person in her family to go to college, but even taking six years to do it—so she could work between semesters—didn’t pay for everything, and she had had to borrow tuition money. On the plus side, she was good at managing expenses, and she lived with a partner who valued her health as much as she did. What Iris was telling her made the disease that stalked her life at long last something she could get her head around, something she might potentially control. It was the first step to beating her endo, and it was clearly worth whatever financial hardships came with it.

Buttressing that notion of control, Iris recommended a few first steps of treatment, starting with pelvic floor physical therapy—a specialty of the physical therapy practice. She gave Elena a list of such specialists, and Elena, a New Yorker, made an appointment at Amy’s practice. The cost would go well beyond what Elena’s insurance plan would cover; Elena calculated quickly and decided that the new sofa she was eyeing for the apartment could easily be put off.

Next, Iris turned to Elena’s interstitial cystitis/painful bladder syndrome, giving her a blueprint for an organic, low-acid, low-potassium, anti-inflammatory diet. She also referred Elena for an ultrasound to rule out the possibility of her having an ovarian cyst; the presence of such a cyst is the only imaging finding that ultrasound can reveal.

Equally important was the education Elena got about the difference between ablation surgery and excision surgery. Iris explained why excision was the proper treatment for endo, and why ablation had not worked for her. “Ablation is superficial; it burns off the top layer of an endo lesion—the surface only. Excision cuts out and removes your endo.” But even though excision is the right procedure, it should be performed only when the body has been sufficiently cooled down from the upregulation the endo has set in motion. Think of endo as the first domino in the row, Iris suggested; when it falls, it sets all the other dominoes tumbling, one after another. What Elena had to understand, Iris told her, was that she needed to address all the “co-condition dominoes” before she could return to the endo domino that had toppled them into her life.

“You think your endo is the cause of everything,” Iris told her, “but in fact it’s endo and its coexisting conditions. As we identify all the conditions and find a treatment plan for each, you will begin to downregulate your central nervous system, and as you do, you will feel your pain and discomfort diminishing. So start with the diet and the PT to begin treating the interstitial cystitis and the tight pelvic floor muscles, and come back to me in six weeks. And bring the records of your operation and your past medical history so I can learn more. I want to make sure we cover all the bases before we schedule excision surgery.” Bottom line: Excision is the right surgery, there is a right time for doing it—after you’ve separated out and begun to deal with all the coexisting conditions.

Elena understood at once that she would have to postpone more than just the new sofa in order to pay for the surgery when the time came. It would not be easy, but it would clearly be essential. In Elena’s pyramid of necessary expenses, PT for right now and excision surgery for soon enough rose to the top, displacing repayment of student loans, the sofa, and the dream Caribbean vacation she and her partner had planned. Health first.

When Elena returned to see Iris six weeks later, she could report that she was urinating less frequently and was now “committed” to her new low-acid, low-potassium, anti-inflammatory eating regimen. She had even recognized that tomatoes, citrus, and coffee aggravated her symptoms; she knew this because she had cheated slightly, reintroducing those items, which had produced instant reactions. Now, needless to say, she was “off” tomatoes, oranges, and black coffee for good.

A less frequent need to urinate also meant that Elena was getting more sleep at night, so she was less tired, so she felt stronger, better, more confident about what she was doing for her health. And while the first couple of sessions of PT seemed to have introduced a new and different discomfort, Amy had explained it was because her muscles were just so tight that trying to lengthen and relax them would leave her sore. “Ever have a massage?” Amy asked. “The same way a massage that kneads the muscles deeply can leave you feeling sore, this initial flare-up of pain is a message that what you’re doing is working.” Elena could sense it too; she could literally feel that her muscles had a long way to go to relax, and after seven sessions of PT, she began to feel that happening. Moreover, her PT team at Amy’s office worked with her on her bladder and bowel habits, helping her to recognize when she was squeezing involuntarily so she could begin to un-squeeze and relax the muscles instead. They also urged her to start using a Squatty Potty, perhaps the best known of the so-called toilet tools—a valid extra expense if ever there was one.

She was still bleeding heavily, and she was still in pain, but she could see a glimmer of hope through it all. As Iris told her, “You’re thirty-eight and have been in pain since you were fifteen. You can’t get rid of twenty-three years of pain in six weeks, but the fact that you’re noticing a difference in only six weeks is promising: It means that your central nervous system is responding, and that this multimodal treatment plan is working. It won’t happen overnight, but you can see that change is coming.” Exactly so, and the glimmer seemed electric.

One part of the plan Elena had not yet had time to follow up on was to consult a specialist who could help her deal with her upregulated central nervous system. So Iris now referred her to a physiatrist who combined Eastern practices of mindfulness and meditation and Western advances in medical treatment to calm the central nervous system. Both approaches are needed, Iris argued. Learning how to meditate was powerful, but often not enough to cool the system on its own. Ditto for taking a pill: Pharmacology can be powerful but far less so when it acts single-handedly. Both together—meditation and the drug, Eastern and Western wisdom—are what cool the central nervous system and help restore the body to balance and efficiency.

The specialist alerted Elena that he would be starting her on a low dose of the medication he prescribed and would then increase the dosage incrementally. It meant she would not feel the drug’s effects for at least a month, maybe longer, as she worked her way up to that “therapeutic” level of intake. Too much of this medication too soon, the specialist warned Elena, could cause unpleasant and serious side effects. He also advised her to download a mindfulness app and spend ten minutes in mindfulness-based stress reduction each morning. She would at least start her day in a downregulated frame of mind and body—“Almost as good as an island vacation,” she told herself. But the specialist also recommended she start a serious meditation practice and/or begin seeing a talk therapist or pain psychologist.

Having experienced the benefits of her efforts so far, Elena embraced these ideas. She also felt she had gained a clearer picture of the multiple different causes of her pain. What she had thought was her “stage one endo” she now recognized as multiple coexisting conditions. She was beginning to understand in the most immediate terms how different actions raised the heat of her central nervous system. But she also wanted to know when she could have surgery.

“I could operate on you tomorrow,” Iris replied, “but I would be a really bad doctor if I did that. I would be doing you a disservice. Let’s cool your body down a bit more and wait about six to twelve weeks before we schedule your surgery. Continue the PT regularly, stay true to the diet, take the meds and do the mindfulness practices the physiatrist prescribed, and you will be well primed for surgery.”

An administrative assistant working for a high-profile senior vice president at a high-profile investment firm doesn’t get that much time off. Iris said Elena would need a week away from the office for surgery and rest at home (not to mention real healing, which can take as much as three months)—so Elena and her boss had to do some fancy stepping to get her the stretch of healthcare leave she needed for her excision surgery. It took another four months. The time was not wasted. Elena kept at the treatment plans for all of the coexisting conditions she and Iris had identified, and she saw dramatic progress in all of them except one: Her painful periods persisted—further indication that her endometriosis needed to be addressed by surgery. But she could sit comfortably now, only had her sleep interrupted “once a night at most” to urinate, and no longer strained as she once had to move her bowels.

She was also far less anxious, and each diminution of her pain, each easing of her body’s tightness reinforced that equanimity and strengthened her commitment to the changes she was undertaking. By the time she finally had her surgery, the nutritional principles and the exercise regimen, the mindfulness and movement practices that had once been lessons to learn had become second nature—automatic behaviors intrinsic to her lifestyle.

In a way, Elena was lucky to feel improvements right from the get-go—as soon as she undertook those first changes in diet and began PT with Amy. The belief that the program worked, as sweeping and constant as were its requirements, was the impetus to keep going. The woman who had walked into Iris’s office in utter despair had achieved a state of well-being that had previously seemed beyond reach.

TAYLOR

Taylor is twenty-eight, with a razor-sharp mind and a fit body, both of which she exercises regularly and intensively. A committed professional, clearly on the partner track in the law firm that snapped her up right out of law school, she works long hours and, given that her specialty is tax law, often deals with stressed-out clients. It suits her. She supplements—or perhaps counters—her work life with a highly active social life and frequent dating. She hopes to marry and have children one day.

But Taylor has persistent aches and pains. Once a month, she deals with fairly severe menstrual pain by loading up on Advil, which helps. But it isn’t just menstrual cramps; she feels pain in her very bones. One is a frequent ache in her left hip. Another is an almost constant pain in her tailbone. In fact, she felt so uncomfortable sitting at a desk or at the conference table all day that she had a stand-up desk installed in her office; now her tailbone hurts only during meetings around the conference table. She finds that she must frequently bolt out of those meetings and head to the ladies’ room to deal with an increasingly urgent need to move her bowels, and at the same time, oddly enough, she is beginning to realize that her “system” seems to alternate between constipation and diarrhea. Worst of all, however, is that she is finding sex painful. It started out as superficial pain, but the pain deepened and persisted; it has now reached the point where she finds the pain—both during and after sex—hard to bear.

She had been to see her gynecologist about much of this. His recommendation was that she have a glass of wine and maybe do some gentle yoga. Taylor already drinks wine and does yoga, although not the gentle kind, so she didn’t find this advice terribly useful.

She decided to see an orthopedist about her hip pain and the pain she felt while seated. He ordered a diagnostic imaging test, and sure enough, it showed a labral tear in Taylor’s left hip. What a relief it was actually to stare at the image of what was causing her pain! Despite the surgeon’s warning that it would take six months to heal completely, she went ahead with the labral tear surgery and then began six months of hip PT geared specifically toward full recovery.

The operation was deemed a success by her orthopedic surgeon. That is, the labral tear was successfully repaired, and Taylor enjoyed slight relief from her hip pain. But the relief was minimal in comparison to all the other discomforts that remained with her—the menstrual cramps, her problems with her bowels, the tailbone pain that she felt sure would recede along with the hip pain but that did not. Above all, she was still having pain during sex. In fact, it was getting worse, and it was making her anxious and depressed.

Taylor tried another gynecologist. Sitting in his office, watching him take copious notes as she answered his questions, she noticed a book on the shelf behind him: Heal Pelvic Pain, it was called, by Amy Stein. She got her hands on a copy and began doing the exercises it offered.

She started to feel better, and Taylor expected that, along with the running and CrossFit that were her normal fitness routine, the pain would recede.

It did, and the bowel urgency also improved, but not enough. And the pain during sex persisted, which was extremely discouraging. Taylor wanted a cure; she also wanted a real diagnosis. She worked so hard at becoming fit and strong and healthy. Being a “healthy person” was a big part of her identity, and the inability to heal her symptoms was emotionally as well as physically painful. There had to be something wrong.

So Taylor made an appointment with the author of Heal Pelvic Pain and proceeded to Amy’s midtown office. She narrated her story, answered Amy’s many questions, and told her what the gynecologist had “prescribed.” Amy was pretty convinced she was hearing the classic symptoms of probable endometriosis—and, in the gynecologist’s “prescription” for a glass of wine and gentle yoga, an unfortunate bit of medical ignorance. After an extensive, head-to-toe external and internal examination with a focus on the abdomen, hip, pelvic floor, and tailbone, the pain points Taylor had complained about, Amy came to a far different conclusion and recommended a far different prescription.

She suggested a number of changes in Taylor’s lifestyle. First thing, said Amy, would be to slow down the high-intensity running and CrossFit, both of which Amy was sure were aggravating the pain in Taylor’s hip and tailbone. Second was a radical change in diet and eating habits: Amy suggested Taylor cut way down on the orange cosmo vodka martinis and focus instead on the bowl of nuts that accompanied them. “You need to go on an anti-inflammatory diet,” she told Taylor, “but given your bowel issues, you also need to eat a lot of the right kind of fiber and to drink plenty of water along with that.” She spelled out what she meant: “Everything organic! I suggest steamed vegetables and fruits, organic, wild-caught fish high in healthy fat—their omega fatty acids can lower inflammation—chicken and lean meat for protein, plus beans and the nuts.” A change in diet, Amy assured her, could be the first step toward calming the bowel urgency and establishing regularity. For the menstrual pain, Amy was okay with Taylor continuing with the Advil for a while, but, suspecting that Taylor had endo, thought she might want to see an endo specialist. As for the pain during and after sex and for the hip and tailbone pain, Amy outlined a highly specific program of physical therapy—along with cutting back on the running and CrossFit. When Taylor objected to giving up her high-intensity favorites, Amy countered that Taylor needed “to let the hip and tailbone pain calm down. That’s the first layer of the onion you have to peel off.” She added, “Try the elliptical machine and a brisk walk—even a fast walk—instead.”

It was a simple program: behavior modifications to downregulate Taylor’s entire central nervous system, one upregulated condition at a time. Over the course of three months, she began to experience definite improvement, as she reported back to Amy. But she was having trouble giving up her exercise routine.

“Okay,” said Amy, “but not giving up the CrossFit and running may actually be slowing the downregulation process. You’re going into hyperdrive to burn fat and calories, and your body can’t recover sufficiently. I really urge you again to switch to an elliptical machine in place of running. Just give up the high-intensity stuff until your system calms down, and in time, you will be able to slowly and carefully go back to it. Right now, instead, do some yoga, but not power yoga—the gentle form. And let me tailor a program of exercise for you that focuses on cardio, stretching, and some very specific hip and core strengthening.”

This time, Taylor agreed to change her exercise routine, to continue with the changed behaviors she had already initiated, and to keep up the weekly PT sessions Amy had prescribed. Three months later, she felt almost entirely “cured.” The two symptoms that still bothered her were the menstrual cramps and painful sex. Amy again emphasized that Taylor really needed to see an endo specialist and “get educated” about her disease process. “Not all ob-gyns are as knowledgeable as I would wish about what I suspect is happening to you, so let me refer you to a specialist.” She referred Taylor to Iris for a full consultation and a thorough examination.

For a start, Iris did her usual thorough history and physical exam. In the latter, she discovered the same sort of thickened ligaments behind the cervix she had seen in Elena—plus a uterus tilted backward; Iris could palpate the area to reproduce Taylor’s pain, and this confirmed her suspicion that Taylor most likely had endo. In fact, Iris estimated a 90 percent probability.

But since Taylor wasn’t yet ready to undergo surgery, Iris first recommended birth control pills to subdue the monthly pain, cautioning Taylor that the pills would treat only her symptoms, not her endo. “The birth control pills won’t keep your endo from progressing,” Iris cautioned her, “but they’ll relieve some of your symptoms.” Second, and conceivably more important, Iris had an extensive talk with her about the disease she was pretty certain Taylor had. She said she thought it likely that Taylor’s endo was decreasing her ovarian reserve and could compromise fertility later on, and she suggested to her that she might want to consider freezing some of her eggs because, while fertility decreases in women without endo at about age thirty-five, women with endo need to face potential fertility issues at an earlier age—in Taylor’s case, right now. Knowing this could be empowering for Taylor. “Come back and see me in three months,” Iris said as she handed Taylor the prescription for the birth control pills.

It was a wake-up call, and it worked. Certainly, the lifestyle changes and physical therapy had downregulated Taylor’s system, alleviated her hip and tailbone pain, and helped improve her bowel symptoms. Sex was less uncomfortable since she started doing PT, although deep penetration still hurt. The pill had also helped her menstrual cramps—she only needed a few Advil a day, not twelve. She had regained a good measure of quality of life by changing significant aspects of it. At that three-month follow-up, Taylor got a refill prescription for the birth control pills, a reminder that the endo inside her was still progressing, and a lot of knowledge about the need to seek out an excision specialist—wherever her career might take her.

For Taylor, along with the benefits of relief from symptoms was the reality of having to contemplate what the presence of endo could mean for her future. It was time to admit that she was up against a reality she could not dodge and a fact she might have to confront at any time. If her pain worsened, if her body responded in new ways to the disease process inside her, she had to be ready to respond with new strategies. Self-governance was important to Taylor; she felt good about all she had achieved in so effectively cooling her nervous system—and in general, in living a healthier life.

SARAH

Sarah, a transplanted Londoner, had suffered severe abdominal pain and disabling menstrual cramps ever since her first period as a young girl. She could not recall a single doctor ever asking her about her menstrual cycle. Finally, as a grown woman in her twenties still unable to get out of bed during her period, she sought medical help and was advised to undergo ablation surgery. That recommendation is the typical first response to presumed cases of endometriosis; it is as standard in the United Kingdom as it is in the United States and just about everywhere else.

Sarah underwent the procedure and felt some relief—at least for two cycles of her period—so she fully expected that the pain would continue to diminish. Instead it returned, worse than ever. Her surgeon examined her again and told her, “There is nothing else I can do.”

Meanwhile, Sarah met, fell in love with, and married an American and moved with him to a midsize town in a midsize state in the American Midwest. Her pain, which was not confined to her menstrual cycle but persisted with no rhyme or reason, was becoming disabling again, so she made an appointment with a local gynecologist, who told her that while he could perform a second ablation surgery, he did not think it would work to alleviate her pain. Instead, noting her complaint of bladder pain, he referred Sarah to a urologist.

The urologist diagnosed chronic urinary tract infection and put Sarah on a course of antibiotics. Once again, the relief she felt was gratifying—for the three days that it lasted. Then the pain returned again, worse than ever. But Sarah finished the full course of antibiotics before she went back to see the urologist again.

His solution was to try another round of antibiotics, which this time brought virtually no relief at all. This prompted an intense round of questioning to compile more details in a search for answers. What the doctor learned from this was that in addition to bladder problems, Sarah suffered from severe constipation—and was unaware of it. She typically moved her bowels once a week, had always done so, and thought it normal. Sarah was now referred to a gastroenterologist.

The gastroenterologist prescribed a daily pill and a daily stool softener. As was now usual—expected, anyway—Sarah felt a bit of relief at first, but after four months, there was no substantive improvement in her condition.

A friend of her husband’s suggested she see an endocrinologist, and an increasingly desperate Sarah made an appointment. The endocrinologist prescribed thyroid medication to raise Sarah’s low thyroid levels and, having noted for years a correlation between endo and autoimmune conditions, confirmed the possibility that Sarah might have an autoimmune disease. And, since the word endometriosis was floating in the air, he also suggested that Sarah get in touch with a New York–based endo specialist—namely, Iris.

Certainly, Sarah had traveled a long way since her family doctor back home in England told her that her pain was something she would “just have to live with,” so the prospect of a trip to New York seemed but another step in the journey and certainly worth trying. That was how she came to be in Iris’s office, where she answered Iris’s rash of questions, went through Iris’s hands-on, extensive physical examination, and heard Iris proclaim that there was “a high likelihood” that Sarah had endometriosis. Iris also recognized that Sarah’s pelvic floor muscles were extremely tight and sent her to Amy for physical therapy. Together, they prescribed a program for Sarah: It would start with understanding the disease process, changing to a low-acid, low-potassium, anti-inflammatory diet to address her interstitial cystitis/painful bladder, getting up and moving and beginning a specialized physical therapy program, moderating the disease’s impacts one by one, undertaking a program of mindfulness through meditation, yoga, qigong, or tai chi—and downregulating the nervous system as preparation for excision surgery, when the time was right.

The prospect was daunting. But the alternative was unthinkable. If her suffering was needless, if she could beat the disease that was beating up her life by taking action, it had to be worth whatever effort, whatever programs, whatever life changes were called for. It was time to start.

After four months of physical therapy, a mindfulness program, downregulating her central nervous system, and cooling her body, Sarah underwent excision surgery. Post-surgery, she resumed her PT and continued her other new lifestyle practices—and regained her life.

There would be no point in asserting that for any or all of these women, what happened next was smooth sailing to a life without pain or discomfort. There was little about what each of them undertook that was smooth, and it certainly was not effortless. But as their bodies benefited from the new habits and practices, and as their minds gained the ability to differentiate among the sources of pain, the self-empowerment became palpable. They understood their own disease process, and they had a process for combating it.

Iris likes to explain it using the classic image of a young child accidentally putting her hand on a hot stove. You probably did that once, and if you did, you pulled your hand away immediately, almost automatically, as the nerves transmitted the message of pain via the spinal cord to your brain, which instructed you to get that hand off that horribly painful thing.

That is acute pain. It hurts, but after a while, it is gone. But while acute pain is entirely different from the chronic pain of endo, the image is still apt: Endo-driven condition by endo-driven condition, our program for beating the disease shows you how to lift hands off a hot stove. Endo is one hand on the stove. Pelvic floor dysfunction is a hand on the stove. Painful bladder is another. Anxiety and depression are two more hands on the stove. An overagitated, overworked central nervous system, kindled by these conditions and burning hotter and hotter as the conditions persist, is yet another. To beat endo, you must lift all the hands off the stove.

As you do so, you begin to register which hand is being lifted; you recognize the nature of the pain and can trace its source. Such understanding is incredibly important to your well-being, because it puts you in control of your disease process. That is exactly how it worked for Elena, Taylor, and Sarah, and it is how it will work for you.

Can there be lapses? Of course. Both of us note a definite, collective lapse among our patients during the winter holidays—and an accompanying flare-up in those women’s symptoms. Iris says it typically starts at Thanksgiving, the annual kickoff date for a month of not adhering to any diet plan and of drinking enough wine that patients stop caring that much that they are not adhering to their diet plans. Then they’re too busy to go to their PT sessions regularly, says Amy, and their schedule leaves them little time for even setting out on a brisk walk. This is surrounded by all the legendary stress of the season, and all the expense and the pressure and the delights and occasional dysfunctions of being with family—right up until New Year’s Day, when a lot of patients typically go on a health kick that can often be just as much of a shock to the system as Thanksgiving dinner was.

Remember: We don’t promise you a cure. Not yet. What we do promise is a way to equip yourself in body and mind to overpower the disease that has been dominating your life. We promise to put you back in the driver’s seat of your health and your future.

Ready?

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