Beating Endo

This doesn’t just mean that endo sufferers might want to refrain from using herbicides on their lawns next spring—dioxins being a by-product of herbicides. It’s a reminder that the way we live, the things we ingest, the makeup and shampoo we use, the choices we make every day can shape the way we feel and the well-being we enjoy—or debase—every day. Beating the disease process of endo also has to happen every day, day after day.

Women with endo have a higher than normal likelihood of developing these autoimmune conditions:

Hashimoto’s thyroiditis

Celiac disease

Sjogren’s syndrome

Multiple sclerosis

Eczema

Rheumatoid arthritis

Systemic lupus erythematosus

Ballweg was a teenager when she first felt the symptoms of what she later learned was endometriosis. She would undergo a number of surgeries for her endo, including excision. But Ballweg is also, by her own definition, “a health nut,” seriously committed to firm practices of nutrition, exercise, and the like—and she believes unreservedly that her own integrated and multimodal program made the difference. Once restored to full health, she formalized the content of that program by creating a protocol that she hoped would help protect her daughter from developing endo. In 2017, Mary Lou and her husband welcomed their first grandchild—a healthy baby girl, born of a healthy mother.

The power to beat endo really is in your hands. We’ll tell you how.

Classic Endo Myths

Hysterectomy is a cure for endometriosis.

FALSE. Hysterectomy is neither a treatment nor a cure. By definition, endo consists of cells similar to those in the lining of the uterus but found outside the uterus; removing the uterus ignores the cells outside. Only surgical excision removes endometriosis cells.

Medical menopause is a cure for endometriosis.

FALSE. Just because your medicines give you hot flashes doesn’t mean your endometriosis is going away.

Teenagers are too young to have endometriosis.

FALSE. Teenage girls can have endo, and their endo can be at an advanced stage.

Pregnancy is a cure for endometriosis.

FALSE. Just no: Pregnancy does not cure endo.

Birth control is a cure for endometriosis.

FALSE. Birth control and other medical treatments treat symptoms only. They do not cure endo; in fact, the endo keeps progressing while you take birth control or other medicines.

If you have minimal endometriosis, you should have minimal symptoms.

FALSE. There is no correlation between the amount of endometriosis and the severity of your symptoms.

Endometriosis is found only in your pelvis.

FALSE. Endo may be found in many areas outside the pelvis. Listen to your body.

Ablation surgery is equal to excision surgery.

FALSE. Not even close. We will explore this more in chapter 11.

All I need is an operation and all my endo symptoms will disappear.

All I need is to become a vegan and all my endo symptoms will disappear.

All I need is to take a few physical therapy sessions and all my endo symptoms will disappear.

FALSE. To beat endo, you need an integrated, multimodal approach—a set of actions.

2

The Goal

Regaining Quality of Life

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.”