Endo is many things
Endometriosis as a disease is vastly complex. Although most people often refer to it as a gynecological or hormonal issue, it’s really not. Endometriosis is a systemic issue much bigger than your pelvic cavity, and so much more than a “woman’s condition” - and needs to be addressed as such.
In it’s entirety, we know through research that endometriosis is an inflammatory + immunological issue, a hormonal issue, a malnutrition issue, a gut-associated issue, and perhaps an epigenetic/genetic issue. Endo is all these things, not just one, and probably a lot more we’ll find as research continues.
What endo is not is a single-faceted issue, and by knowing more about your disease, where it comes from, and how it’s affecting your own body, you’ll be able to chose the best course of action for you. Even more, knowing all the facets that contribute to endo shows us that we can successfully support the body in many holistic ways to reduce the severity of our disease - which is awesome AF. Read on to discover the many faces of endo!
The Hormonal Component
Much of the hormonal implication of endo is directly linked to to the endo lesions themselves, whose growth is fueled by estradiol (a type of estrogen). This makes sense in the same way that your uterine lining grows via estrogen during your monthly cycle, this specific endometrium lining is just misplaced where it shouldn’t be.
The issue, however, is that this may not be a normally functioning endometrium lining. In a healthy woman without endo, the endometrium responds to both estrogen and progesterone throughout the cycle. They balance each other out, working together to grow and shed the lining every month. In the endo-woman, research is uncovering that the endometrium itself may be aberrant - meaning problematic and misbehaving - even when correctly placed in the womb. The big issue here is progesterone resistance, specifically problem with this tissue’s progesterone receptors, so even if you have enough progesterone circulating there’s a possibility your uterine lining isn’t using it .
This is important for a few reasons. One, progesterone is anti-inflammatory hormone, and in a normal cycle it helps break apart the endometrium tissue in the normal course of the month. In a woman with endo, this break down may not happen as usual, and instead the estrogen will dominate the tissue and spur its continual growth without the necessary break down. The other issue this may fuel is endo-related unexplained infertility - these are women with endo who have open tubes and ovulating ovaries, but they still can’t get pregnant. This may be related to this malfunctioning endometrium, or it may also be related to the inflammatory environment of the pelvis (which can create progesterone resistance on its own) and something research will have to help uncover further.
To add insult to injury, many of the toxins in our world today are known endocrine disruptors, specifically estrogen-like compounds called xenoestrogen. As we slather on conventional beauty products or eat off of plastics, we’re introducing such ingredients as PCBs, BPA, parabens, and phthalates to our system which may then continue to fuel more endo growth.
The Epigenetic Component
If you’re wondering why your endometrium is misbehaving in the first place, research is starting to uncover that epigenetic modifications may be at play. One gene being affected is important within the endometrium cells themselves. Homeobox A10, aka HOXA10, is a gene involved in normal uterine function, and has been noticed to fail to do its job after ovulation in women with endo due to a methylation issue . This may be one of the reasons for the progesterone resistance of the uterine lining. How this came to be may have been seeded before you were even born, in this case through dioxin exposure in the womb. Researchers exposing pregnant mice to dioxins observed that the offspring had the same epigenetic progesterone resistance issue.
Before you get mad at mom, know that dioxins are really really abundant in our food supply so it’s not like she was bathing in irradiated beauty cream or anything. We can only blame our generations above us for dumping these toxins onto our planet (toxins that never break down smaller or go away), and do our part to stop the pollution from continuing in order to protect our daughters and all future generations. But I digress.
Back to endo, what this uncovers is that your aberrant endometrium may have been laid down pre-birth. It may mean that its progesterone resistance and its odd genetic behavior may also be the reason that way-word tissue could set up shop where it shouldn’t be in the first place, and why it continues to fuel its own growth without being able to properly break apart and be cleaned up.
The Immune Component
There’s a little known fact in this community that endometriosis is an autoimmune-related disease, and that the immune system of a woman with endo is improperly functioning. This is very very very important to understand.
When we think of immunity we often think of sick, or not. You might even be saying “Katie, my immune system is great, I never get sick!”. Hear me out. Your immune system is in charge of a LOT, with being sick just a fragment of how your body deals with pathogens. The other thing an immune system is responsible for is inflammation. When there’s an acute injury, inflammation comes to the rescue with blood, lymph, white blood cells, and nutrients. Even more, the immune system is also responsible for turning the inflammation off once the job is done. The problem arises when this inflammatory response get’s stuck on and can’t turn back off. Hello Endometriosis.
The other thing your immune system should do is clean up misplaced endometrium lining. If we look at the theory of retrograde menstruation, it’s estimated to occur in up to 90% of healthy women, yet only 10% of women have endometriosis. The immune dysfunction may be the missing piece to this puzzle since it’s well understood that the immune system is acting peculiar in the pelvic cavity. There’s an issue with both the innate immune system and the adaptive immune system - neither are working right - and in fact this misbehaving immune response is part responsible for creating even more inflammation while inducing less down-regulating of inflammatory activities.
In addition, it has been noted there are often auto-antibodies floating around in the endo-body - these are the antibodies your body would produce if you have an autoimmune disorder. They’re attack-cells that attack, well, your own cells. However, in the case of endometriosis there isn’t just one that we could test for (say, an auto-antibody that attacks your endometrium lining) and we instead see a changing variety depending on each woman. This may be because endo has associated auto-immune disorders, or because there’s something more complex we have yet to figure out. Just know, there is a definite auto-immune component with endo, an important thing to remember when we look at how holistic healing comes into play.
The Gut Component
One thing virtually all autoimmune disorders have in common is increased gut -permeability (aka leaky gut) and/or dysbiosis. In fact, it’s widely agreed upon in science to be a pre-requisite for developing autoimmune disorders - and remember endometriosis is an autoimmune-related disease. Leaky gut is when your intestinal lining has degraded so much that the insides of your intestines (aka poop-to-be) are now leaking into the insides of your body. A gross analogy? An I.V. of fecal water. You can imagine this will have an impact on your system.
And this is especially bad for the immune system, obviously, since it now mounts an immune response to foods you’re eating that are leaking directly into your bloodstream, like tomato sauce being poured into an open wound, for example. Tomatoes were never supposed to be in your blood stream, so if you eat tomatoes everyday your immune system may go so haywire from attacking tomato juice 24/7 that it starts attacking your own body (this is the autoimmune component I just discussed, when you make auto-antibodies to attack yourself). This is a big reason for chronic inflammation and an immune system on the fritz.
The other issue connecting endo + the gut is related to gut bacteria. Pathogenic species in the gut release something called endotoxins, or LPS, which is a highly toxic compound. If it stays in your intestines, that’s great, if it leaks out into your body, it’s not great, and it may even be directly implicated in the development of endometriosis.
Studies are now showing that LPS alone is both a promotor and aggravator of endometriosis. Not only has it been shown to directly stimulate endo lesions, but it’s also been suggested it’s working hand in hand with estrogen to grow lesions and inflammation in the pelvic cavity. Even more, LPS was found to be 4-6x higher in the menstrual blood of women with endo, and some varieties even colonized within the endo lesions.
And as far as the endo-warrior gut, studies have shown us to have significantly altered gut microbiomes, specifically less gram positive bacteria and more gram negative varieties (gram negative varieties produce the LPS I mentioned). Some scientists are now hypothesizing the “gut microbiota may be involved crucially in the onset and progression of endometriosis.” This is great because it’s opening brand new doors of research that may be key in unlocking new treatment options for this multi-faceted disease, as one 2019 study posits “whether dysbiosis leads to endometriosis or endometriosis leads to dysbiosis.”
This is a very important takeaway, knowing that your “endo-belly” may be fueling the endo, rather than the other way around.
The Malnutrition and Stress Component
One thing all chronic disease has in common is a level of malnutrition, and Studies show nutrient deficiency may even directly contribute to the development of endometriosis in the first place. There are also studies showing us endo-gals are either in extra need (or very deficient in) vitamin E [1,2], vitamin C [3,4], zinc , omega3’s , vitamin D , vitamin A, and selenium . This may be because we’re a) not eating enough nutrients, or b) because we require more nutrients than our endo-free sister to fight the inflammation in our bodies. I would hypothesize it’s a combination of both, since 90% of Americans are deficient in at least a handful of vitamins and minerals, and on top of that our endo-needs are higher.
Here’s a teeny-tiny example why you should care: zinc, omega-3’s, antioxidants, D, and A are all absolutely necessary for immune activities - meaning they’re needed to turn off inflammation (yes please!). If you’re severely deficient in these nutrients (which science says you probably are) then you literally won’t be able to do this, and the inflammatory response continues. It’s that simple. In fact, the immune system is one of the biggest users of nutrients in our whole body! So if your immune system is acting out - as you know yours is - you may want to consider her like a toddler who’s hungry and throwing an angry tantrum. Please feed her :)
Stress itself is a huge player. Not only is it linked to increased gut permeability, depression, anxiety, and disease prevalence, it's also now known to increase the amount and severity of endometriosis. In a 2012 study, scientists made rats with endometriosis perform a stressful swim test 10 days in a row (omg, poor rats) to measure the bodily effects. The stress not only increased the amount of inflammation involved with the endo and surrounding tissues, it also increased the amount of endometriosis lesions!
Putting it all together
If you’re now thoroughly overwhelmed (sorry!), here’s the summary:
Your predisposition for endo may have been laid down pre-birth when dioxins ravaged your progesterone receptors amongst other things, creating a misbehaving endometrium. This endometrium was then able to get out of your uterus (either retrograde menstruation or in-utero), where it wasn’t able to be properly cleaned up. This may be because the endometrium itself is abnormally behaving, or because your immune system couldn’t clean it up properly. Maybe both. In addition, the inflammatory environment may further create progesterone resistance, so it may be a chicken or the egg issue.
And now, because of your endo-belly, you have LPS flowing into your pelvic cavity, potentially working in this inflammatory environment to create even more chaos and inflammation - sparking more growths, more lesions, more pain. Where did it come from? We could hypothesize the leaky gut issue combined with the dysbiosis issue, allowing for lots of toxic substances that should be in your poop to creep on over to your pelvis and inflict pain instead. And with the leaky gut comes the autoimmune component, since leaky gut is virtually a prerequisite for the development of any autoimmune disorder. Now your immune system itself is acting abnormally, and it can’t turn off the inflammation. This is also why you may develop an additional autoimmune or two.
Insert malnutrition and your body doesn’t have either the nutrients needed to fight the inflammation (like vitamin C, E or zinc), nor does it have enough nutrients to regulate the immune system (like A, D, zinc, or selenium) to turn that chronic inflammation off. Insert stress and we’re adding a gale force wind to the wild-fire.
All these things together paint the picture of endo - the big take away being that endo is incredibly multi-faceted. This is why no single treatment will work for everyone, why some people have more pain than others, why some deal with infertility and some don’t, and why your endo journey to health will be 100% unique. Ah, the many facets of endo :)
Does this help paint a bigger picture? How we should start looking at endo less as a gyno issue and more of a full-body-gone-bizerk issue? It’s important to see it this way because there’s actually a lot we can do to bring a system like this back into balance!
Why You Should be Excited Rather Than Overwhelmed
I may have just painted you a complex picture of a disease that is now, you realize, a full body issue. So before you crumble thinking it’s even worse than you previously imagined, let me tell you this should instead give you hope! Yes, hope, because knowing endo is all of these things offers us new way of approaching this disease to heal.
This is how nutrition + lifestyle can help
Nutrition and lifestyle (a la Heal Endo) are going to be the foundation from which you heal the systemic issues. These facets alone can help regulate the immune system! Yup, they can actually help correct course to calm down the self-attack soothe the inflammation. This is also how you can heal and seal the gut, balance hormones, reverse IBS and gastro symptoms, stop stress, and reverse malnutrition. There is no pill available that will do this, it’s 99% up to your food and lifestyle choices. Pretty cool huh?
Want to see an inspiring study? 15 folk with active IBD (autoimmune/related diseases, also “incurable”) were put on the Paleo AutoImmune Protocol diet + lifestyle. After six weeks 11 participants (73%) achieved full clinical remission, and they maintained remission throughout the maintenance phase of the study as well. This goes to show just how much what you do + eat can reverse the “incurable” in many sufferers.
Movement helps too - immensely. it brings blood flow and lymph to the place you need it, your pelvic cavity. If you want to bring in fresh troops of nutrients + immunity, while relieving the fallen soldier of inflammation and toxins, you must bring blood flow to that pelvic cavity, and why movement and alignment are huge parts of the Heal Endo approach.
Complementary methods not on this site have also helps many a fallen endo-warrior, and are an important aid to consider for stubborn endo. Chinese medicine, acupuncture, herbalists, meditation, they’re all know to help certain women with certain issues. If you’ve tried one and it didn’t help, try another. They’re all different, and you may find exactly what your body is craving after a few tries.
How medical practitioners can help
Surgery is the foundation from which you heal from endo-body-specific issues, such as removing endo lesions + scar tissue, or dislodging organs from one another. This may be a crucial step on many endo-journeys as a well-done surgery may be the difference between complete remission and partial symptom management. If you’re here on this site because you’re trying your best to avoid surgery, please know that at the end of the day there is NO SHAME in having to opt for a surgery. This is where modern medicine can really help us endo girls!
Additionally, if your tubes are blocked, damaged, or there is significant scarring, IVF may offer hope to women wishing for a child. Truly, modern medicine may be a big part of your fertility option if you have “mechanical issues” like this, quite literally preventing pregnancy from happening.
Remember, healing from endo is holistic. Whole = using all the tools in your kit to bring your body back into balance. Endo is many things, and sometimes needs many experts, many healing hands, and many healing modalities for you to feel your best. By always knowing everything you can both about your disease, and about how the disease is affecting you personally, you’re already on the correct path. Never give up your hope in finding a life you can be happy living!