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.
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: