5 Truths About Endometriosis Remission
I used to have terrible, active endometriosis. My pain, chronic fatigue, joint pain, infertility, and body-falling-apart symptoms were bad. I tried what I thought (at the time) was everything: lowering my estrogen, going vegan, doing lots of yoga, and cutting out huge swaths of food while taking an un-Godly amount of supplements. While some days were better than others, nothing really helped, which was really a bummer since I felt like I had dedicated half my life to this endeavor. I assumed I was stuck in the same boat as other sufferers I read about online who only got worse and worse and worse no matter what.
But then it all changed ***cue magic music and sparkly lights*** and I found out that endometriosis can be put in remission.
It was when I first discovered a nutrient-dense ancestral diet that the clouds started to lift. That when I stopped over-exercising and instead input better movement styles and healed my core dysfunction my pain evaporated. Now 8 years in full clinical remission, I have two beautiful children (after being recommended a hysterectomy) and live a life that keeps me in remission. I help other sufferers do the same, whether it be through diet and lifestyle alone, or with the addition of a professionally done surgery and lots of extra integrative care. No matter how you slice it, I do believe the majority of us should be able to find a new normal in which we’re not excessively suffering, be it full remission or partial. In fact, I think it’s a crime that those with endo aren’t often told this is a possibility.
What is Endometriosis Remission?
Endometriosis is a chronic, inflammatory disease, meaning there is no cure in a typical sense. You can’t take a pill and have endo be gone, never to be seen again. Instead, your new goal is to put your endo in remission, where it no longer causes problems. This can happen in numerous ways depending on who you are and which types of endo you have (remember, there are different types). Research shows endo can change for the better in the following ways (I have a post on this in-depth here):
Lesions can shrink or regress,
Lesions can stabilize, as in lesions don’t grow or progress into worse forms of endo (although they could remain symptomatic, but at least they’re not fusing your bowel to your ovary or eating into your appendix), or
Lesions can become inactive, as in they are still there but not causing any problems.
When any of these things happens, you may notice a partial or total cessation of symptoms. This would be referred to as remission, either full or partial depending on the level.
If the idea that endometriosis can regress in size and volume, or simply continue to exist without causing problems, is news to you, know that it’s actually well-documented. One review found that while 29% of those with endo had disease that ended up progressing, 42% actually showed disease regression. 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 (inactive, so to speak). (1,2)
There is also a great study on the efficacy of NAC treatment (an amino acid that supports anti-inflammatory activity) on women with large endometriomas (endo-filled cysts, an advanced form of endo) who were dealing with infertility. These women were all signed up for surgical removal of their endometriomas at the end of a 3-month time frame, yet 50% of the NAC treated group canceled their surgery beforehand due to the cysts actually shrinking or disappearing, their symptoms receding, or getting pregnant. This isn’t to say that NAC is the silver bullet we’ve all been looking for, just that — with the correct anti-inflammatory approach — we may be able to halt, or even potentially regress, that endo of ours. (3)
Understanding that endo lesions can grow or shrink, and be active or not, highlights the important point that endo is not so much a noun (something static and unchanging) as it is a verb (a process unfolding that can change over time). This helps us understand the word remission in so many new ways.
[Note: while endometriosis lesions may be able to regress, this does not mean scar tissue or adhesions can also regress. Why you want to stop endo long before damage sets in since the damage can eventually become irreversible].
5 Basic Truths About Endometriosis Remission
Endometriosis is an inflammatory disease. Straight up. So, if you have a ton of inflammation, your endo will most likely be angry, possibly progress, and definitely be symptomatic. If you remove the triggers and soothe the inflammation, you may put the endo into a place of remission, either by stopping the lesions, the symptoms, or both. This, my friends, is your goal.
While remission (or partial remission) is possible, getting there will look different for just about every one of us! I wish we could all follow an easy plan and get to the same place, but it ain’t so. We all have our own stages, our own triggers, our own level of damage that has occurred by the time of diagnosis, and our own symptom burden. Still, there are some basic truths about remission we can all learn from so we at least know what to aim for. Here are five.
1) Endometriosis remission is more of a sliding scale than a black or white achievement
Remission can come in many shapes and sizes. Full clinical remission means you walk, talk, act and feel like the endo is totally gone. You’re basically clear of all your symptoms… it’s awesome. Partial remission is more like you’re “managing the symptoms you can”. It may mean you have some irreversible damage present, so you will indeed experience some bouts of uncomfortableness or pain with certain activities. Others may be able to achieve full remission for periods of time, but during bouts of sickness or times of high-stress feel some symptoms creep back.
But, by shifting our lifestyles to accommodate these highs and lows, we can often support our bodies in the unique ways they need which keeps endo at bay. This means that even if full remission isn’t possible, we can still reclaim our quality of life for the majority of the time. And that's much to be thankful for.
2) Remission should not resemble a lifelong crash diet or “cleanse”
There is so much strange info about endo out there involving restriction and “being clean”. I know because I believed it for a long time! I tried all the juice cleanses, raw foodism, veganism, intense yoga, detoxes, liver cleanses, candida cleanses, you name it. It seemed wherever I looked there was someone making a case that my body was “dirty” and if I removed the offenders, my endo would be gone. Weird, huh?
The truth is, finding remission doesn’t mean you need to lead an abstinent, empty, bland, “clean” life. It actually means you need to live a fun, amazing, happy, positive, and nourishing life… that doesn’t sound too bad, does it? Yes, you’ll probably have to change your diet, movement patterns, and which beauty and cleaning products you use. It will also involve changing how to perceive/deal with stress, how much you’re on social media, and finding the activities/hobbies that bring you joy (not just dopamine hits). But this doesn’t mean that you have to turn into that vegan yogi on Tik Tok with the bright white walls and bespoke wood floors who can magically keep her 100 houseplants alive while living on air, acai, and spandex in order to find remission. Nope, not at all.
So, if you feel like you have to strong-arm yourself into maintaining a certain “endo supportive” lifestyle, it’s not the right lifestyle for you! Find what makes YOU happy, and what foods YOU like (that are, of course, very nutrient-dense). When YOU do this, YOU will be on the right path.
3) You may need surgery to full heal from your endometriosis
Some of us will need professionally done excision surgery to achieve the level of remission we need. Endometriosis is a disease that can get worse over time, with perhaps 1 in 3 cases progressing into something worse (1). Progression means your inflammatory response is going gang-busters, so your endo is either growing or spreading or infiltrating into your innocent nearby tissues and organs. Meanwhile, all that inflammation is creating scar tissue and adhesions.
This is not something you want, and why surgery becomes an i-n-c-r-e-d-i-b-l-e tool for those who need it. It’s why the surgical experts I interviewed for my book recommend a 6-12 month timeframe to work on clearing up symptoms through holistic endeavors, but if they’re not budging, please seek a surgical consult soon after. Seriously, do not delay, because that means your endo may be mutilating your innards (sorry to be so blunt, but it’s important information to get across!).
Still, please know that not everyone with endo will need excision surgery. I myself am one example of someone who was able to achieve full clinical remission without one, and I have numerous clients in the same boat. This is the best-case scenario, really, since we want to avoid surgery unless absolutely necessary. Expert surgeries are often expensive and inaccessible to everyone who has endo (there are millions of us), so I hope you feel a little buoyed hearing you may not need one.
How do you know which camp you’re in? It sounds cliche but, really, listen to your body and follow your gut instinct. If you feel like you’ve done a lot of work and symptoms are still lingering, do yourself a favor and seek a surgical consult. If you’re dealing with infertility to no avail, seek a consult. If you’re just not sure, seek a consult. But, if your symptoms fade and you find remission, you may not need surgery after all. Check-in with yourself year after year, be honest, and review your symptom load.
4) address your endometriosis triggers once and for all, don’t just manage symptoms.
If inflammation is fire, your endometriosis lesions are gas canisters. Whenever fire meets gas there are HUGE explosions. Those explosions damage nearby tissues, which invites more inflammation, which ignites the gas canisters again, and BOOM! More explosions. Catching what I’m throwing? Yes, exactly, you need to extinguish the fire so those gas canisters cool down to the point they start to collect dust in the proverbial garage and cause no more problems.
Stop the inflammation, and you may be able to stop the endo.
To do this, you will need to find your own biggest inflammation provokers triggering your endometriosis time and time again. For some of us, diet is our key element, which is why diet alone can create remission for some lucky ones! Think, if dairy and gluten are your triggers, and you not only remove them but also increase your antioxidant and nutrient intake, your body may just sigh with relief as the inflammation dissipates. I have had clients balance blood sugar to get pregnant after years of infertility, and others’ painful-beyond-belief periods clear with dairy removal. Lucky, cool, and amazing for these “easy cases”, so don’t knock it before you try it.
Yet, some journies are much more complex, and you need to know there are many, many, many triggers that can exist. This is where sleuthing them out and addressing them directly will get you the gains you need. It’s the difference between managing symptoms and eliminating the symptom from occurring.
Gut dysbiosis is a biggie, so if you have terrible GI distress consider working with a gut professional ASAP. Please, please, please (I said it three times for good luck) address your endo-belly rather than hiding it under baggy pants. Doing so may dramatically improve your endo. Of course, there are many more triggers out there. Reproductive tract dysbiosis is another biggie, check out my post here. I had a client with Lyme and mold toxicity issues, and addressing these issues with specialists helped her endometriosis symptoms more than her professionally done excision surgery. Another client who reached out post-surgery (from one of the leading surgeons in the US) still had digestive issues, enormous bloating, and pelvic pain. Only by addressing her core dysfunction could she find the healing she needed.
So know that, while diet and lifestyle are tantamount to finding and keeping remission, you may have some big issues “under the hood” that need special attention. Keep your mind open and keep seeking solutions beyond the endo. Every time you can eliminate another inflammatory trigger, you take another step in the right direction in keeping those endo “gas canisters” from exploding.
5) Remission must often be actively maintained.
If endo had a “cure”, it would mean we wouldn’t have to change anything about our lives and the endo would go away. If only it could be so easy! Alas, if you have persistent endo, finding and keeping it in remission may be a lifelong deal … again why this must be a lifestyle shift rather than a crash diet plan. Think of it like you’ll probably need to learn some new skills (that are fun!) and also restrict some things (that are hurting you), and you may need a surgery, but overall you’ll create a better life in the long run, even if it seems a little challenging upfront.
For me, actively maintaining endometriosis remission means that I learned bit by bit what improves my health, and I now do those things consistently. I infuse nutrients, movement, breathing exercises, and joy into my everyday. I cook (a lot), I garden (a lot), I walk in the forest, I play at the beach with my kids, and I do work that actively lights up my soul (that being helping women with endo!).
My current garden, growing the foods that keep my endo in remission and build up strong, healthy kiddos! If you have kids and don’t know how you’ll ever find the time to garden, put a playhouse in the garden. There ya go, probem solved, now go grow some veggies!
If you anxiously say, “Katie I don’t have time for these things I’m so busy!!!!!”, let me remind you that the average American spends 2 hours and 27 minutes on social media each day. Each. Day. Only on social media. If you see folk putting out tonsssssss of content, know they spend a lot more time on it, maybe 4-5 hours. Every. Day. On social media. If you’re not on social media you still may fall into the average 11 hours a day on screens, so maybe your crutch is binging on Netflix or obsessing over the news. Whatever it is, I think most of us could probably free up some time by divorcing that little, or big, screen. Wink wink, nudge nudge ;)
This is one reason why I myself restrict my social media usage…even though I should probably be on it more to promote my upcoming book release. At the end of the day, my health and the health of my family are too valuable to squander on making cool Insta Reels. I also hope to inspire all of you reading this to hop off :) Lead by example, right?
Actively maintaining remission means I also avoid other things that don’t aid my health. Examples include glutenous, cheesy pizza, but also doom scrolling news, late-night parties, and intense HIIT exercise classes. If this makes you nervous (like, say you’re obsessed with late-night partying, social media, and glutenous, cheesy pizza like I was, and can’t stand the thought of not), hear me out. Once you master the “art” of keeping your endo in remission, you may find you’re a) much happier without the partying, pizza, and Tik Tok, or b) you’re now so healthy you could tolerate some partying from time to time, enjoy 20 minutes (and no more!) of social media catch up, and you learn what kind of pizza you can tolerate, and master making it like a pro.
Remission: A New word in the endo-arsenal
I hope by looking at endometriosis through the lens of remission we can all start conversing about it a little differently. It’s a spectrum we should all aim for. While understanding what helps one sufferer achieve remission may not help another (we’re all unique snowflakes after all), it’s still important to share our stories and successes and listen to each other about what may possibly work. Some may need surgery, absolutely, and some may not. Some may achieve full clinical remission easily, others not so much. Still, remission, as a word, is so hopeful. It’s so much better to aim for than “managing symptoms” for life.
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.
3) Porpora, M. G., Brunelli, R., Costa, G., Imperiale, L., Krasnowska, E. K., Lundeberg, T., Nofroni, I., Piccioni, M. G., Pittaluga, E., Ticino, A., & Parasassi, T. (2013). A promise in the treatment of endometriosis: An observational cohort study on ovarian endometrioma reduction by N-Acetylcysteine. Evidence-based complementary and alternative medicine : eCAM. Retrieved May 24, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662115/