Beating Endo. Dr Iris Kerin Orbuch

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СКАЧАТЬ 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 СКАЧАТЬ