Beating Endo

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.