Beating Endo

How to Reclaim Your Life from Endometriosis

Iris Kerin Orbuch, Amy Stein

• Publisher: Harper
• Year: 2019
• Print ISBN:
  9780062861849
• eBook ISBN:
  9780062861856
• Topic: Medicine
• Subtopic: Anesthesiology & Pain Management

From two of the world's leading experts in endometriosis comes an essential, first-of-its kind book that unwraps the mystery of the disease and gives women the tools they need to reclaim their lives from it. 

Approximately one out of every 10 women has endometriosis, an inflammatory disease that causes chronic pain, limits life's activities, and may lead to infertility. Despite the disease's  prevalence, the average woman may suffer for a decade or more before receiving an accurate diagnosis. Once she does, she's often given little more than a prescription for pain killers and a referral for the wrong kind of surgery.  Beating Endo arms women with what has long been missing—even within the medical community—namely, cutting-edge knowledge of how the disease works and what the endo sufferer can do to take charge of her fight against it.

Leading gynecologist and endometriosis specialist Dr. Iris Kerin Orbuch and world-renowned pelvic pain specialist and physical therapist Dr. Amy Stein have long partnered with each other and with other healthcare practitioners to address the disease's host of co-existing conditions—which can include pelvic floor muscle dysfunction, gastrointestinal ailments, painful bladder syndrome, central nervous system sensitization—through a whole-mind/whole-body approach. Now,  Beating Endo formalizes the multimodal program they developed, offering readers an anti-inflammatory lifestyle protocol that incorporates physical therapy, nutrition, mindfulness, and environment to systematically addresses each of the disease's co-conditions on an ongoing basis up to and following excision surgery. This is the program that has achieved successful outcomes for their patients; it is the program that works to restore health, vitality, and quality of life to women with endo.

No more "misdiagnosis roulette" and no more limits on women's lives:  Beating Endo puts the tools of renewed health in the hands of those whose health is at risk.

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...

Table of contents

• Cover
• Title Page
• Dedication
• Contents
• 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
• Index
• About the Authors
• Copyright
• About the Publisher