Beating Endo. Dr Iris Kerin Orbuch

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СКАЧАТЬ 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 СКАЧАТЬ