Beating Endo

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?