Beating Endo. Dr Iris Kerin Orbuch
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