Beating Endo

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?