Beating Endo. Dr Iris Kerin Orbuch

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СКАЧАТЬ 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 СКАЧАТЬ