Beating Endo. Dr Iris Kerin Orbuch

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