Endometriosis: A Verb
Inflammation is the driving force behind endometriosis. Not only is chronic, localized inflammation one driver in creating an endo-like cell in the first place, it’s also the major driver behind the establishment, activation, and continued progression of endo lesions. Scar tissue, adhesions, pain? Yah, all the result of an intense, prolonged inflammatory attack without end. Endo is an inflammatory disease, and this is why.
If inflammation drives endometriosis, can stopping inflammation stop endo?
Research has an answer: yes, it can, and it may be more common than we realize.
One review found that while 29% of those with endo had disease that ended up progressing, 42% actually showed disease regression while 29% remained stable. That means more than twice as many patients had endo that stabilized or reversed, rather than progressed.
Another review of healthy, fertile women having their “tubes tied” to prevent pregnancy found asymptomatic endo in nearly 6% of these women at the time of surgery—with lesions that were established but not causing problems. (1,2)
While the reason WHY the endo regressed, stabilized, or was inactive wasn’t the aim of these studies, they instead clearly show endometriosis isn’t always progressive. It also helps us understand we may have more control than we realize about this disease.
*Note: scar tissue, organ damage, and adhesions cannot be reversed (this research was just looking at the endo lesions themselves)
Understanding that endo lesions can grow or shrink, and be active or not, highlights the important point that endo is not necessarily a noun (something static and unchanging) as much as it is a verb (a process unfolding that can change over time). In other words, if we have active endo we are endo-ing.
Endo (verb): To endo; endo-ing. The many body, chemical, and immune processes that spur the development and progression of endometriosis.
New Goal: do everything we can to stop endo-ing
This shift in perspective gives us back control in many ways over our disease. We can’t do much if we believe we just get endo, but we can seek real solutions if we understand that many elements go into endo-ing.
Why Does This Information Feel So … Weird?
Because we’ve been told there is no cure for endometriosis. We’ve also been told the only way to remove endo lesions is through surgery. But here we see endometriosis lesions can regress in size, become inactive, or maybe even disappear, all on their own. That’s why this information, if new to your ears, feels weird. Maybe even a bit taboo to talk about.
So let’s clear up some misperceptions (or how this information could be misconstrued) so we’re all on the same page:
1) Endometriosis lesion regression/inactivation doesn’t equate to a cure (sorry!).
Cure = disease is totally rid from body and no matter what you do/don’t do it will never come back! Rather, endo is known as a “chronic disease”. Similar to autoimmune disorders and cancer, once you have the foundation for endo it will be able to come back and rear its ugly ‘ol head. With a disease like this, you aim for remission. That means your goal is to stop the inflammation drivers in whatever ways you need to bring your body back into health (diet, lifestyle, integrative care, surgery), and then continue with the new, healthy habit to keep endometriosis away.
2) We don’t need this endometriosis information to make life harder on us!
Say you have Stage 4 endo and your grandma (who read this blog) tells you “Don’t worry, it will simply disappear if you try hard enough!”. Ick (please don’t do that, grandma!).
Endo is complex, and much of it is out of our hands no matter how “hard we try”! There are many types of endo, some more aggressive than others, and many of us have late diagnoses where the endo has progressed so far our organs are stuck together, it’s infiltrated deeply into innocent tissues, and scar tissue is present. You no longer have just lesions, you have a LOT of damage and pain-provoking factors. We also don’t know if some people have types of endo that can regress easier than other types, or certain varieties known to be more aggressive/stubborn. Hopefully we know more as research unfolds but, for now, this post is just about how endometriosis lesions in general can behave. This should give us hope, but within reason.
3) Some of us will still need endometriosis surgery, nuff said
It’s why wide excision surgery by an expert surgeon is an incredible tool, although not all of us will need one. We can try our best to reduce, stabilize, or regress endo, but if it’s not working, endo surgery should be the absolute next step to prevent progression. If you’re in that 30% who has progression, this is essential information to prevent irreversible organ damage.
4) Last, we’ve been told we can only manage endometriosis symptoms
But now we hear we may actually be able to impact our disease itself through targeted diet and lifestyle? Yes, this is true, and it may feel weird at first. Hopefully it won’t feel so weird the more we hear about it. I like what longtime researcher Dr. Dan Martin Says on the topic, maybe you will too:
“But surgery is not the only answer, particularly for earlier endometriosis in primary care, especially in the teens, and potentially for those with deep nodules. For those, the use of hormonal suppression, diet, lifestyle modification, anti-inflammatory therapy, antioxidants control of oxidative stress, and an integrative framework are necessary considerations to address the chronic inflammation and immune dysfunction that drive the disease… Control of these factors may stop or limit endometriotic lesions if started early, when lesions are small and before they have time for significant inflammation, fibrosis, angiogenesis, epigenetic modifications, and genetic mutations. Alleviating the chronic inflammation and immune dysfunction that contribute to the disease may potentially prevent disease progression, scar tissue formation, and adhesions.”[3]
Building a Better Body Ecology to Stop Endo-ing
Ok, Ok, at this point you’re probably like, “Show me how to shrink ‘em! I’ll try anything”
To better understand where to start, I’d like to introduce the concept of something I call whole-body ecology. Ecology itself is the scientific study of the interconnected relationship between all living organisms within their environment. For example, when studying the ecology of a forest, a tree is just as important to understand as a leopard, bug, grass, rainfall, and even wind pattern. Each contributes to the proper health of that forest, even if they don’t seem connected to the naked eye.
With this understanding in mind, we can use the term “whole body ecology” to explain how our 11 main bodily system (see image below) interact with our endo lesions. The health of a tree is not isolated from the health of the forest, nor does the behavior of your endo act alone. Rather, the operations of all eleven bodily systems are connected to your endo behavior through vast networks of communication, hormone, nerve, and immune channels. You could imagine enormous text threads between these systems that, quite literally, never stop.
This is how we can make sense of the many factors that may affect your endo behavior…even though the factors may initially seem disconnected from the endo lesions in your body: why reducing stress or removing dairy reduced your pain significantly, or why acupuncture helped support your fertility challenges. Excitingly, research is right there with us, showing hundreds of studies on factors that may help your body stop endo-ing.
Addressing these factors may contribute to the stabilization or regression of endometriosis lesion size, the de-activation of lesions (meaning lesions remain but no longer cause problems), or simply the reduction of symptoms, ranging from pain and fatigue to nausea or infertility. Indeed we know many factors go into a) creating an endo-like cell, b) provoking inflammation, and c) immune dysfunction. This is how research has found seemingly separate yet negative inputs (like chronic stress, chemical exposure, muscle tension, poor nutrition, etc) can increase endo lesion size, volume, or symptoms.
Alternatively, there are hundreds of studies available that demonstrate how seemingly separate inputs can support the immune system to effectively clear or reduce endometriosis lesions (or simply reduce symptoms) the way it should, whether through necessary changes in diet and lifestyle (like I touch on throughout this blog), to more serious treatments like pharmaceuticals, hormone therapy, antibiotics, or any of the complementary and alternative methods mention in my book.
Some of these factors include the following (click links for more in-depth info!):
Nutrition! How many nutrients you get (or, ahem, don’t get), blood sugar regulation, and food intolerances.
Microbial factors. You won’t even believe how much gut and reproductive tract dysbiosis is associated with endo. This is SO big for the endo body it’s unbelievable, and excitingly something that can be addressed. This may help not just your endo-belly, but also your endo.
Hormones. Of course sex hormones are a big part of endo, but another biggie are stress hormones (which we can do a lot to address today).
Lifestyle factors. It turns out there’s quite a bit of research on seemingly very-disconnected-from-your-endo activities like sleep, community, stress, and even oral hygiene are associated with endo-ing.
Movement. As in we don’t get enough, nor the right kind. This is especially important for those of us with endo-belly, joint pain, back pain, and pelvic floor dysfunction (so yah, most of us).
Toxins. Many everyday products are chock full of chemicals associated with endo, many of which we can remove.
Established endo lesions. Because, once established, endo lesions become another contributor to the whole body ecology, why a properly done surgery is an essential component of healing from endo for those who need it (yet, not all of us will)
So I ask, what if we can tip back the scales from sickness towards health, from inflammatory inputs to soothing inputs for all our bodily systems? What if we did it all, balancing the gut microbiome, removing toxic chemicals from our homes and bodies, sleeping more, eating with deep nutrition in mind, retraining the core, moving a lot… all the factors that allow us to stand a fighting chance against endo. If you stop the inflammation in its tracks, you may be able to stop endo-ing. If you’ve met or heard of women who managed their endo into a place that it no longer causes them problems (i.e., remission), then you’ve seen this in action.
“When the immune system works, it is capable of inactivating, stabilizing, and clearing endometriosis. If we can harness the innate ability of the immune system, we may improve the lives of women and transgender men. While we of course must be diligent in seeking earlier and better treatment for those with endometriosis, we can remember that endometriosis is not always a devastating disease, especially if we can approach it with a modern understanding of the immune system, and a unique care plan for those suffering.” Dr. Dan Martin
If you love this information, make sure to read my book, Heal Endo: An Anti-Inflammatory Approach to Healing From Endometriosis, which is FULL of advice to stop endo-ing, thanks to hundreds and hundreds of published research articles!
1) Evers, J.L.H. (2013). Is adolescent endometriosis a progressive disease that needs to be diagnosed and treated? Human Reproduction, 28(8), 2023. https://doi.org/10.1093/humrep/det298
2) Fuentes A, Escalona J, Céspedes P, Espinoza A, Johnson MC. (2014). Prevalencia de la endometriosis en mujeres sometidas a esterilización quirúrgica laparoscópica en un hospital de Santiago de Chile [Prevalence of endometriosis in 287 women undergoing surgical sterilization in Santiago Chile]. Rev Med Chil, 142(1), 16-9. Spanish. https://doi.org/10.4067/S0034-98872014000100003. [To note, because of the normalization of pain, it’s possible these women had symptoms to some degree but considered it normal]
3) Martin DC. Endometriosis Concepts and Theories. Resurge Press, Richmond, Virginia, revised April 16, 2023, https://www.danmartinmd.com/files/endotheory.pdf. Accessed [insert date]