“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,