Читать книгу Beating Endo - Dr Iris Kerin Orbuch - Страница 10

We all pretty much know what a disease is; it’s a disorder in any living thing that impairs the normal functioning of the area it affects and that may be manifested in various symptoms. But what do we mean when we talk about “a disease process”? It is probably enough to say that a disease process is a disease that keeps going. The impairing disorder with its various symptoms continues, and as it continues, it disrupts the normal functioning of other parts of the body too.

The pain generated by the disease also expands, upregulating an ever-wider range of the central nervous system and bringing pain to more areas of the body. A colleague of ours, urogynecologist Dr. Charles Butrick, the first of the other expert practitioners we promised you would be hearing from in the course of this book, puts it this way: “The longer the pain has been present, the greater the likelihood that new pain generators will develop.” This describes the disease process of endometriosis to a T.

How do you beat a chronic and systemic disease process once it has been set in motion? By setting in motion another process that is equally chronic and equally systemic. That means, simply put, that you must be prepared to address the disease across a number of different organ systems; it also means you can’t assume that having done so, you are also done with this disease. You won’t cure your endo, but you will beat it. And that is how you will regain the life you want and deserve.

Our integrated, multimodal approach is such a process. But because endo can affect individual women in so many ways and at varying levels of intensity, the way you employ the approach will depend on your particular experience. For many patients, excision surgery to rid the body of the endo implants that have been causing pain and dysfunction is key. But surgery does not fully end the pain and dysfunction. Both have been part of your body for so long and have so upregulated your central nervous system that virtually your entire body and in a sense your entire life almost literally resonate with the disease. That is why it is so important to suss out each dimension—each co-condition—of your disease comprehensively and comprehensibly, preferably under the guidance of an endo specialist.

We are all too aware, however, that finding such a specialist can be a challenge. Our friend and colleague Heather Guidone of the Center for Endometriosis Care estimates that as of this writing, there are about one hundred endometriosis specialists skilled in excision surgery across the United States and fewer than one hundred elsewhere in the world. The reasons for these low population figures are fairly obvious: The excision surgery is technically challenging and requires advanced training—well beyond the basic surgeries most generalist ob-gyn physicians master during a four-year residency. The advanced training for endometriosis represents yet more time “in school.”

Still, one of the authors of this book is an endo specialist who went through the advanced training, mastered the surgery, and writes from a deep well of experience and knowledge. So there are endo specialists to find, and probably the best place to find them is on Nancy’s Nook Endometriosis Education, the Facebook group founded by the endo expert Nancy Petersen, whom we met in chapter 1.

Once you’ve found the right specialist, you will need to bring to the discussion all that you learn in this book about the unique multimodal approach we have created—which is not a standard that is typically taught—and then you and the specialist will need to examine in depth what the disease of endo may be doing to you: to your bladder, gut, sex life, and, pervasively, to your central nervous system. We’ll help you with that examination in the chapters that follow. Then you will need to lay out precisely how to combat those symptoms so that you can reclaim your life. We’ll help with that too; it’s what our process is all about. Your endo may be fierce, but it is not beyond your power to tame and control.

Healthcare practitioners like us would call the process a protocol—a plan of actions aimed in great measure at downregulating your central nervous system. The logic of tackling one facet of your endo after another is that downregulating the system even a notch makes you feel significantly better. Feeling better gives you more energy to get stronger, and every advance in strength makes you better able to take on the next condition, then the next, and in time all the other conditions that may be upending your life. Equally important, any additional recommended medical interventions—excision surgery, for example—will work better on a less stressed, less inflamed, stronger, calmer you.

The bottom line on this process of downregulation and up-strengthening is that it will require a number of changes only you can make, for they are effectively changes in your current lifestyle. You’ll almost certainly need to abandon ingrained habits and rethink routines that have become second nature. You’ll have to learn and instill new habits and routines until they become second nature. It will take time. It will take effort. Again, it may require undergoing excision surgery—the one thing you really can’t do on your own—and a process of post-op recovery. It certainly demands commitment. But it’s the way to bring your endo-battered body back to a level of strength and vigor that lets you regain the quality of your life.

How does it work? Meet three women who did it. Different ages, different backgrounds, different experiences of endo, and at different stages of life when they came to our attention and undertook the actions we recommended. But all three committed themselves to it, all three effected the changes needed, and all three have taken back their lives.

Here’s how they did it:

ELENA

At her first appointment, Elena sat across from Iris and announced: “I’ve been told I have stage one endometriosis and I have undergone ablation surgery,” a procedure in which the endo lesions are cauterized—“burned off” rather than rooted out. Elena wanted to know why, after all that, she still suffered what she described as “debilitating pain.”

Iris well knew of course that there is no correlation between the amount of endo in the body and the severity of the pain the endo sufferer experiences. She also knew that ablation surgery is ineffective in ridding the body of endo and may only temporarily—if that—relieve a patient’s pain. Elena had a lot to say about her pain. “I can’t function,” she began. “I can’t go to work.” (Elena was an administrative assistant in a hot-shot investment firm.) “I can’t have sex without pain.” (She was in a long-term relationship with a decidedly supportive man.) “I need to ask my mother for assistance to carry out simple household chores.

“Help me,” she said. “I want my life back.”

Iris began, as she always does, with one-on-one questioning. She asked Elena about her history with endo from the time her pain began—she was a teenager—to the present, age thirty-eight. Patients tend to become downright eloquent when they talk about their pain—especially patients like Elena who have lived with the pain for decades. They are well acquainted with it, and they believe they know everything there is to know about it. But in listening to what a patient says about her pain, the careful clinician needs to pierce that familiarity and draw out of the patient precisely what a doctor needs to know. Iris listened carefully. Then she went deeper.

She asked about Elena’s periods, which both were painful and produced an extremely heavy flow with clots. Elena told of having to leave a party because her menstrual flow soaked through and stained what she was wearing; her partner walked closely behind her as they snuck out as quickly and unobtrusively as possible. The pain, said Elena, was in no way limited to the time of menstruation but was felt at different times of the month. Iris recognized this as standard; the pain of endo can occur anytime.

Next Iris wanted to know about what Elena referred to as “stomach issues.” She had experienced these “issues” since she was a teenager, and Iris elicited from her that she consistently strained when trying to move her bowels and found it painful to do so. She also felt a squeezing sensation around her rectum, and when asked about back pain, said that hers was the result of a childhood softball injury when she triumphantly stole home and stepped down so hard on the plate that she felt it from her ankle to her shoulder. To this day, Elena said, that injury made sitting difficult—especially during the long commute to work. Iris suspected that long-term constipation and straining her muscles in response to endometriosis were really what was at issue in Elena’s pain, not stealing home base in high school.

Iris asked about her urological function, which Elena hadn’t even mentioned, but in response to questions, she told Iris that she got up a couple of times a night to urinate, urinated twelve to fifteen times during the day, and still felt pressure on her bladder. When Iris pressed the point, Elena recalled that she had had five “urinary tract infections,” as she dubbed them, the previous year, even though her urologist told her no bacteria were found in the test.

Moreover, Elena could not tolerate birth control pills, which one doctor had prescribed for her cramps, because they worsened her migraines and she couldn’t bear the pills’ side effects. Also, she had already undergone a full workup by a gastroenterologist, not to mention a colonoscopy, with results that, happily, were totally negative—nothing wrong with her.

There may have been “nothing wrong with her,” but none of the medical treatments she had undergone, including her ablation surgery, had alleviated her pain—no surprise to Iris. Elena was exhausted, and she was becoming depressed.

It was all of this that had finally prompted Elena to seek out a specialist. Her boss, a senior vice president at the firm, had heard about Iris and suggested Elena call. She made an appointment for a “single consultation only,” as she made clear; Elena was pretty sure she wouldn’t be able to afford going out of network more than once.

But she had never had a consultation like this. She had never been asked the kinds of questions Iris asked—how often she urinated, did she ever get constipated, her sex life—and that was before Iris even began to examine her! So she was surprised and extremely interested when Iris told her that the interview alone suggested that Elena was dealing with a number of systemic conditions—urological, gastrointestinal, musculoskeletal—all of which were super-sensitizing and thereby upregulating her central nervous system.

That was just for openers. As Iris went through her physical exam, Elena felt herself being probed carefully from head to toe, a probe that, from Iris’s point of view, confirmed her original assessment. Iris could feel the tightened muscles that told her Elena had abdominal and pelvic floor dysfunction. She noted the thickened ligaments behind the uterus, in the small space between the rectum and the back wall of the vagina and uterus known as the pouch of Douglas; thickened ligaments are a typical clue for endo. The pain that made Elena grunt when Iris pressed on Elena’s uterus confirmed the suspicion that she probably had adenomyosis as well—endo-like cells in the muscle of the uterus. Iris was convinced that Elena suffered both that syndrome known variously as interstitial cystitis or painful bladder syndrome and tight pelvic muscles. It was also possible, she surmised, that in Elena’s case, the endo implants were literally on the bladder.

Physical exam, questions asked and answered in detail, medical history: The aim was to translate a patient’s catalogue of symptoms into an analysis of system dysfunctions. For Iris, it was a way of decoding heavy menstrual bleeding, back pain, constipation, trouble sitting down, and all Elena’s other symptoms into a template of coexisting urological, gastrointestinal, and musculoskeletal conditions. And in its turn, it enabled the creation of a systems-based plan of treatment.

For Elena, learning that what was undermining her life was a panoply of conditions that began with endometriosis and that now coexisted with it was a revelation, but the realization that she needed to treat all of those conditions was a lot to absorb—especially after the false hope of ablation surgery. Yet in a very real sense, Elena was relieved to see this great, huge colossus of unreachable pain broken down into separate systems and into treatable conditions—with a plan for each.

Affording it was going to be tough. At age thirty-eight, Elena was still paying off student loans. She had been the first person in her family to go to college, but even taking six years to do it—so she could work between semesters—didn’t pay for everything, and she had had to borrow tuition money. On the plus side, she was good at managing expenses, and she lived with a partner who valued her health as much as she did. What Iris was telling her made the disease that stalked her life at long last something she could get her head around, something she might potentially control. It was the first step to beating her endo, and it was clearly worth whatever financial hardships came with it.

Buttressing that notion of control, Iris recommended a few first steps of treatment, starting with pelvic floor physical therapy—a specialty of the physical therapy practice. She gave Elena a list of such specialists, and Elena, a New Yorker, made an appointment at Amy’s practice. The cost would go well beyond what Elena’s insurance plan would cover; Elena calculated quickly and decided that the new sofa she was eyeing for the apartment could easily be put off.

Next, Iris turned to Elena’s interstitial cystitis/painful bladder syndrome, giving her a blueprint for an organic, low-acid, low-potassium, anti-inflammatory diet. She also referred Elena for an ultrasound to rule out the possibility of her having an ovarian cyst; the presence of such a cyst is the only imaging finding that ultrasound can reveal.

Equally important was the education Elena got about the difference between ablation surgery and excision surgery. Iris explained why excision was the proper treatment for endo, and why ablation had not worked for her. “Ablation is superficial; it burns off the top layer of an endo lesion—the surface only. Excision cuts out and removes your endo.” But even though excision is the right procedure, it should be performed only when the body has been sufficiently cooled down from the upregulation the endo has set in motion. Think of endo as the first domino in the row, Iris suggested; when it falls, it sets all the other dominoes tumbling, one after another. What Elena had to understand, Iris told her, was that she needed to address all the “co-condition dominoes” before she could return to the endo domino that had toppled them into her life.

“You think your endo is the cause of everything,” Iris told her, “but in fact it’s endo and its coexisting conditions. As we identify all the conditions and find a treatment plan for each, you will begin to downregulate your central nervous system, and as you do, you will feel your pain and discomfort diminishing. So start with the diet and the PT to begin treating the interstitial cystitis and the tight pelvic floor muscles, and come back to me in six weeks. And bring the records of your operation and your past medical history so I can learn more. I want to make sure we cover all the bases before we schedule excision surgery.” Bottom line: Excision is the right surgery, there is a right time for doing it—after you’ve separated out and begun to deal with all the coexisting conditions.

Elena understood at once that she would have to postpone more than just the new sofa in order to pay for the surgery when the time came. It would not be easy, but it would clearly be essential. In Elena’s pyramid of necessary expenses, PT for right now and excision surgery for soon enough rose to the top, displacing repayment of student loans, the sofa, and the dream Caribbean vacation she and her partner had planned. Health first.

When Elena returned to see Iris six weeks later, she could report that she was urinating less frequently and was now “committed” to her new low-acid, low-potassium, anti-inflammatory eating regimen. She had even recognized that tomatoes, citrus, and coffee aggravated her symptoms; she knew this because she had cheated slightly, reintroducing those items, which had produced instant reactions. Now, needless to say, she was “off” tomatoes, oranges, and black coffee for good.

A less frequent need to urinate also meant that Elena was getting more sleep at night, so she was less tired, so she felt stronger, better, more confident about what she was doing for her health. And while the first couple of sessions of PT seemed to have introduced a new and different discomfort, Amy had explained it was because her muscles were just so tight that trying to lengthen and relax them would leave her sore. “Ever have a massage?” Amy asked. “The same way a massage that kneads the muscles deeply can leave you feeling sore, this initial flare-up of pain is a message that what you’re doing is working.” Elena could sense it too; she could literally feel that her muscles had a long way to go to relax, and after seven sessions of PT, she began to feel that happening. Moreover, her PT team at Amy’s office worked with her on her bladder and bowel habits, helping her to recognize when she was squeezing involuntarily so she could begin to un-squeeze and relax the muscles instead. They also urged her to start using a Squatty Potty, perhaps the best known of the so-called toilet tools—a valid extra expense if ever there was one.

She was still bleeding heavily, and she was still in pain, but she could see a glimmer of hope through it all. As Iris told her, “You’re thirty-eight and have been in pain since you were fifteen. You can’t get rid of twenty-three years of pain in six weeks, but the fact that you’re noticing a difference in only six weeks is promising: It means that your central nervous system is responding, and that this multimodal treatment plan is working. It won’t happen overnight, but you can see that change is coming.” Exactly so, and the glimmer seemed electric.

One part of the plan Elena had not yet had time to follow up on was to consult a specialist who could help her deal with her upregulated central nervous system. So Iris now referred her to a physiatrist who combined Eastern practices of mindfulness and meditation and Western advances in medical treatment to calm the central nervous system. Both approaches are needed, Iris argued. Learning how to meditate was powerful, but often not enough to cool the system on its own. Ditto for taking a pill: Pharmacology can be powerful but far less so when it acts single-handedly. Both together—meditation and the drug, Eastern and Western wisdom—are what cool the central nervous system and help restore the body to balance and efficiency.

The specialist alerted Elena that he would be starting her on a low dose of the medication he prescribed and would then increase the dosage incrementally. It meant she would not feel the drug’s effects for at least a month, maybe longer, as she worked her way up to that “therapeutic” level of intake. Too much of this medication too soon, the specialist warned Elena, could cause unpleasant and serious side effects. He also advised her to download a mindfulness app and spend ten minutes in mindfulness-based stress reduction each morning. She would at least start her day in a downregulated frame of mind and body—“Almost as good as an island vacation,” she told herself. But the specialist also recommended she start a serious meditation practice and/or begin seeing a talk therapist or pain psychologist.

Having experienced the benefits of her efforts so far, Elena embraced these ideas. She also felt she had gained a clearer picture of the multiple different causes of her pain. What she had thought was her “stage one endo” she now recognized as multiple coexisting conditions. She was beginning to understand in the most immediate terms how different actions raised the heat of her central nervous system. But she also wanted to know when she could have surgery.

“I could operate on you tomorrow,” Iris replied, “but I would be a really bad doctor if I did that. I would be doing you a disservice. Let’s cool your body down a bit more and wait about six to twelve weeks before we schedule your surgery. Continue the PT regularly, stay true to the diet, take the meds and do the mindfulness practices the physiatrist prescribed, and you will be well primed for surgery.”

An administrative assistant working for a high-profile senior vice president at a high-profile investment firm doesn’t get that much time off. Iris said Elena would need a week away from the office for surgery and rest at home (not to mention real healing, which can take as much as three months)—so Elena and her boss had to do some fancy stepping to get her the stretch of healthcare leave she needed for her excision surgery. It took another four months. The time was not wasted. Elena kept at the treatment plans for all of the coexisting conditions she and Iris had identified, and she saw dramatic progress in all of them except one: Her painful periods persisted—further indication that her endometriosis needed to be addressed by surgery. But she could sit comfortably now, only had her sleep interrupted “once a night at most” to urinate, and no longer strained as she once had to move her bowels.

She was also far less anxious, and each diminution of her pain, each easing of her body’s tightness reinforced that equanimity and strengthened her commitment to the changes she was undertaking. By the time she finally had her surgery, the nutritional principles and the exercise regimen, the mindfulness and movement practices that had once been lessons to learn had become second nature—automatic behaviors intrinsic to her lifestyle.

In a way, Elena was lucky to feel improvements right from the get-go—as soon as she undertook those first changes in diet and began PT with Amy. The belief that the program worked, as sweeping and constant as were its requirements, was the impetus to keep going. The woman who had walked into Iris’s office in utter despair had achieved a state of well-being that had previously seemed beyond reach.

TAYLOR

Taylor is twenty-eight, with a razor-sharp mind and a fit body, both of which she exercises regularly and intensively. A committed professional, clearly on the partner track in the law firm that snapped her up right out of law school, she works long hours and, given that her specialty is tax law, often deals with stressed-out clients. It suits her. She supplements—or perhaps counters—her work life with a highly active social life and frequent dating. She hopes to marry and have children one day.

But Taylor has persistent aches and pains. Once a month, she deals with fairly severe menstrual pain by loading up on Advil, which helps. But it isn’t just menstrual cramps; she feels pain in her very bones. One is a frequent ache in her left hip. Another is an almost constant pain in her tailbone. In fact, she felt so uncomfortable sitting at a desk or at the conference table all day that she had a stand-up desk installed in her office; now her tailbone hurts only during meetings around the conference table. She finds that she must frequently bolt out of those meetings and head to the ladies’ room to deal with an increasingly urgent need to move her bowels, and at the same time, oddly enough, she is beginning to realize that her “system” seems to alternate between constipation and diarrhea. Worst of all, however, is that she is finding sex painful. It started out as superficial pain, but the pain deepened and persisted; it has now reached the point where she finds the pain—both during and after sex—hard to bear.

She had been to see her gynecologist about much of this. His recommendation was that she have a glass of wine and maybe do some gentle yoga. Taylor already drinks wine and does yoga, although not the gentle kind, so she didn’t find this advice terribly useful.

She decided to see an orthopedist about her hip pain and the pain she felt while seated. He ordered a diagnostic imaging test, and sure enough, it showed a labral tear in Taylor’s left hip. What a relief it was actually to stare at the image of what was causing her pain! Despite the surgeon’s warning that it would take six months to heal completely, she went ahead with the labral tear surgery and then began six months of hip PT geared specifically toward full recovery.

The operation was deemed a success by her orthopedic surgeon. That is, the labral tear was successfully repaired, and Taylor enjoyed slight relief from her hip pain. But the relief was minimal in comparison to all the other discomforts that remained with her—the menstrual cramps, her problems with her bowels, the tailbone pain that she felt sure would recede along with the hip pain but that did not. Above all, she was still having pain during sex. In fact, it was getting worse, and it was making her anxious and depressed.

Taylor tried another gynecologist. Sitting in his office, watching him take copious notes as she answered his questions, she noticed a book on the shelf behind him: Heal Pelvic Pain, it was called, by Amy Stein. She got her hands on a copy and began doing the exercises it offered.

She started to feel better, and Taylor expected that, along with the running and CrossFit that were her normal fitness routine, the pain would recede.

It did, and the bowel urgency also improved, but not enough. And the pain during sex persisted, which was extremely discouraging. Taylor wanted a cure; she also wanted a real diagnosis. She worked so hard at becoming fit and strong and healthy. Being a “healthy person” was a big part of her identity, and the inability to heal her symptoms was emotionally as well as physically painful. There had to be something wrong.

So Taylor made an appointment with the author of Heal Pelvic Pain and proceeded to Amy’s midtown office. She narrated her story, answered Amy’s many questions, and told her what the gynecologist had “prescribed.” Amy was pretty convinced she was hearing the classic symptoms of probable endometriosis—and, in the gynecologist’s “prescription” for a glass of wine and gentle yoga, an unfortunate bit of medical ignorance. After an extensive, head-to-toe external and internal examination with a focus on the abdomen, hip, pelvic floor, and tailbone, the pain points Taylor had complained about, Amy came to a far different conclusion and recommended a far different prescription.

She suggested a number of changes in Taylor’s lifestyle. First thing, said Amy, would be to slow down the high-intensity running and CrossFit, both of which Amy was sure were aggravating the pain in Taylor’s hip and tailbone. Second was a radical change in diet and eating habits: Amy suggested Taylor cut way down on the orange cosmo vodka martinis and focus instead on the bowl of nuts that accompanied them. “You need to go on an anti-inflammatory diet,” she told Taylor, “but given your bowel issues, you also need to eat a lot of the right kind of fiber and to drink plenty of water along with that.” She spelled out what she meant: “Everything organic! I suggest steamed vegetables and fruits, organic, wild-caught fish high in healthy fat—their omega fatty acids can lower inflammation—chicken and lean meat for protein, plus beans and the nuts.” A change in diet, Amy assured her, could be the first step toward calming the bowel urgency and establishing regularity. For the menstrual pain, Amy was okay with Taylor continuing with the Advil for a while, but, suspecting that Taylor had endo, thought she might want to see an endo specialist. As for the pain during and after sex and for the hip and tailbone pain, Amy outlined a highly specific program of physical therapy—along with cutting back on the running and CrossFit. When Taylor objected to giving up her high-intensity favorites, Amy countered that Taylor needed “to let the hip and tailbone pain calm down. That’s the first layer of the onion you have to peel off.” She added, “Try the elliptical machine and a brisk walk—even a fast walk—instead.”

It was a simple program: behavior modifications to downregulate Taylor’s entire central nervous system, one upregulated condition at a time. Over the course of three months, she began to experience definite improvement, as she reported back to Amy. But she was having trouble giving up her exercise routine.

“Okay,” said Amy, “but not giving up the CrossFit and running may actually be slowing the downregulation process. You’re going into hyperdrive to burn fat and calories, and your body can’t recover sufficiently. I really urge you again to switch to an elliptical machine in place of running. Just give up the high-intensity stuff until your system calms down, and in time, you will be able to slowly and carefully go back to it. Right now, instead, do some yoga, but not power yoga—the gentle form. And let me tailor a program of exercise for you that focuses on cardio, stretching, and some very specific hip and core strengthening.”

This time, Taylor agreed to change her exercise routine, to continue with the changed behaviors she had already initiated, and to keep up the weekly PT sessions Amy had prescribed. Three months later, she felt almost entirely “cured.” The two symptoms that still bothered her were the menstrual cramps and painful sex. Amy again emphasized that Taylor really needed to see an endo specialist and “get educated” about her disease process. “Not all ob-gyns are as knowledgeable as I would wish about what I suspect is happening to you, so let me refer you to a specialist.” She referred Taylor to Iris for a full consultation and a thorough examination.

For a start, Iris did her usual thorough history and physical exam. In the latter, she discovered the same sort of thickened ligaments behind the cervix she had seen in Elena—plus a uterus tilted backward; Iris could palpate the area to reproduce Taylor’s pain, and this confirmed her suspicion that Taylor most likely had endo. In fact, Iris estimated a 90 percent probability.

But since Taylor wasn’t yet ready to undergo surgery, Iris first recommended birth control pills to subdue the monthly pain, cautioning Taylor that the pills would treat only her symptoms, not her endo. “The birth control pills won’t keep your endo from progressing,” Iris cautioned her, “but they’ll relieve some of your symptoms.” Second, and conceivably more important, Iris had an extensive talk with her about the disease she was pretty certain Taylor had. She said she thought it likely that Taylor’s endo was decreasing her ovarian reserve and could compromise fertility later on, and she suggested to her that she might want to consider freezing some of her eggs because, while fertility decreases in women without endo at about age thirty-five, women with endo need to face potential fertility issues at an earlier age—in Taylor’s case, right now. Knowing this could be empowering for Taylor. “Come back and see me in three months,” Iris said as she handed Taylor the prescription for the birth control pills.

It was a wake-up call, and it worked. Certainly, the lifestyle changes and physical therapy had downregulated Taylor’s system, alleviated her hip and tailbone pain, and helped improve her bowel symptoms. Sex was less uncomfortable since she started doing PT, although deep penetration still hurt. The pill had also helped her menstrual cramps—she only needed a few Advil a day, not twelve. She had regained a good measure of quality of life by changing significant aspects of it. At that three-month follow-up, Taylor got a refill prescription for the birth control pills, a reminder that the endo inside her was still progressing, and a lot of knowledge about the need to seek out an excision specialist—wherever her career might take her.

For Taylor, along with the benefits of relief from symptoms was the reality of having to contemplate what the presence of endo could mean for her future. It was time to admit that she was up against a reality she could not dodge and a fact she might have to confront at any time. If her pain worsened, if her body responded in new ways to the disease process inside her, she had to be ready to respond with new strategies. Self-governance was important to Taylor; she felt good about all she had achieved in so effectively cooling her nervous system—and in general, in living a healthier life.

SARAH

Sarah, a transplanted Londoner, had suffered severe abdominal pain and disabling menstrual cramps ever since her first period as a young girl. She could not recall a single doctor ever asking her about her menstrual cycle. Finally, as a grown woman in her twenties still unable to get out of bed during her period, she sought medical help and was advised to undergo ablation surgery. That recommendation is the typical first response to presumed cases of endometriosis; it is as standard in the United Kingdom as it is in the United States and just about everywhere else.

Sarah underwent the procedure and felt some relief—at least for two cycles of her period—so she fully expected that the pain would continue to diminish. Instead it returned, worse than ever. Her surgeon examined her again and told her, “There is nothing else I can do.”

Meanwhile, Sarah met, fell in love with, and married an American and moved with him to a midsize town in a midsize state in the American Midwest. Her pain, which was not confined to her menstrual cycle but persisted with no rhyme or reason, was becoming disabling again, so she made an appointment with a local gynecologist, who told her that while he could perform a second ablation surgery, he did not think it would work to alleviate her pain. Instead, noting her complaint of bladder pain, he referred Sarah to a urologist.

The urologist diagnosed chronic urinary tract infection and put Sarah on a course of antibiotics. Once again, the relief she felt was gratifying—for the three days that it lasted. Then the pain returned again, worse than ever. But Sarah finished the full course of antibiotics before she went back to see the urologist again.

His solution was to try another round of antibiotics, which this time brought virtually no relief at all. This prompted an intense round of questioning to compile more details in a search for answers. What the doctor learned from this was that in addition to bladder problems, Sarah suffered from severe constipation—and was unaware of it. She typically moved her bowels once a week, had always done so, and thought it normal. Sarah was now referred to a gastroenterologist.

The gastroenterologist prescribed a daily pill and a daily stool softener. As was now usual—expected, anyway—Sarah felt a bit of relief at first, but after four months, there was no substantive improvement in her condition.

A friend of her husband’s suggested she see an endocrinologist, and an increasingly desperate Sarah made an appointment. The endocrinologist prescribed thyroid medication to raise Sarah’s low thyroid levels and, having noted for years a correlation between endo and autoimmune conditions, confirmed the possibility that Sarah might have an autoimmune disease. And, since the word endometriosis was floating in the air, he also suggested that Sarah get in touch with a New York–based endo specialist—namely, Iris.

Certainly, Sarah had traveled a long way since her family doctor back home in England told her that her pain was something she would “just have to live with,” so the prospect of a trip to New York seemed but another step in the journey and certainly worth trying. That was how she came to be in Iris’s office, where she answered Iris’s rash of questions, went through Iris’s hands-on, extensive physical examination, and heard Iris proclaim that there was “a high likelihood” that Sarah had endometriosis. Iris also recognized that Sarah’s pelvic floor muscles were extremely tight and sent her to Amy for physical therapy. Together, they prescribed a program for Sarah: It would start with understanding the disease process, changing to a low-acid, low-potassium, anti-inflammatory diet to address her interstitial cystitis/painful bladder, getting up and moving and beginning a specialized physical therapy program, moderating the disease’s impacts one by one, undertaking a program of mindfulness through meditation, yoga, qigong, or tai chi—and downregulating the nervous system as preparation for excision surgery, when the time was right.

The prospect was daunting. But the alternative was unthinkable. If her suffering was needless, if she could beat the disease that was beating up her life by taking action, it had to be worth whatever effort, whatever programs, whatever life changes were called for. It was time to start.

After four months of physical therapy, a mindfulness program, downregulating her central nervous system, and cooling her body, Sarah underwent excision surgery. Post-surgery, she resumed her PT and continued her other new lifestyle practices—and regained her life.

There would be no point in asserting that for any or all of these women, what happened next was smooth sailing to a life without pain or discomfort. There was little about what each of them undertook that was smooth, and it certainly was not effortless. But as their bodies benefited from the new habits and practices, and as their minds gained the ability to differentiate among the sources of pain, the self-empowerment became palpable. They understood their own disease process, and they had a process for combating it.

Iris likes to explain it using the classic image of a young child accidentally putting her hand on a hot stove. You probably did that once, and if you did, you pulled your hand away immediately, almost automatically, as the nerves transmitted the message of pain via the spinal cord to your brain, which instructed you to get that hand off that horribly painful thing.

That is acute pain. It hurts, but after a while, it is gone. But while acute pain is entirely different from the chronic pain of endo, the image is still apt: Endo-driven condition by endo-driven condition, our program for beating the disease shows you how to lift hands off a hot stove. Endo is one hand on the stove. Pelvic floor dysfunction is a hand on the stove. Painful bladder is another. Anxiety and depression are two more hands on the stove. An overagitated, overworked central nervous system, kindled by these conditions and burning hotter and hotter as the conditions persist, is yet another. To beat endo, you must lift all the hands off the stove.

As you do so, you begin to register which hand is being lifted; you recognize the nature of the pain and can trace its source. Such understanding is incredibly important to your well-being, because it puts you in control of your disease process. That is exactly how it worked for Elena, Taylor, and Sarah, and it is how it will work for you.

Can there be lapses? Of course. Both of us note a definite, collective lapse among our patients during the winter holidays—and an accompanying flare-up in those women’s symptoms. Iris says it typically starts at Thanksgiving, the annual kickoff date for a month of not adhering to any diet plan and of drinking enough wine that patients stop caring that much that they are not adhering to their diet plans. Then they’re too busy to go to their PT sessions regularly, says Amy, and their schedule leaves them little time for even setting out on a brisk walk. This is surrounded by all the legendary stress of the season, and all the expense and the pressure and the delights and occasional dysfunctions of being with family—right up until New Year’s Day, when a lot of patients typically go on a health kick that can often be just as much of a shock to the system as Thanksgiving dinner was.

Remember: We don’t promise you a cure. Not yet. What we do promise is a way to equip yourself in body and mind to overpower the disease that has been dominating your life. We promise to put you back in the driver’s seat of your health and your future.

Ready?