A few weeks ago I saw an angry post by an endo-sufferer who had spoken with another woman who said she "used to have endometriosis, but it cleared up.” The woman posting was so angry about how this was part of the problem that perpetuates the myth you can cure endo because there IS NO CURE. The anger was real, and it helped me understand the extent the tagline “There is no cure” may be destroying women’s hopes for a better life.

“Remission: Disappearance of the signs and symptoms of disease. A remission can be temporary or permanent.”

Because here are some truths: endometriosis can’t be cured in a traditional sense. There is no pill you can take that will cure you of endo forever.

Like other chronic inflammatory diseases, from autoimmune to cancer, endometriosis symptoms can be put into full or partial remission.
Beyond symptoms, lesions themselves can progress or regress. 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 progressing. [1]
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. [2]
Depending on the woman, the finding remission may be easy (maybe cutting out gluten) or seem random (like after pregnancy). For others it may be a journey, including a properly done surgery, a dietary overhaul, addressing bacteria in the gut, and maybe a lot more. It may take a year or many years, but it’s very possible to address many, if not most or all, of your worst endo symptoms with the correct approach and a supportive team.

What Does Endometriosis Remission Mean?

Because it’s so challenging to track lesion size and behavior without going in surgically to see (hopefully this changes), we can only best track endometriosis through symptoms.

Clinical remission of endometriosis would mean the end of your endo-specific associated symptoms. If you’ve heard of women undergoing specialist excision surgeries and achieving remission, this is a perfect example. It means even though you have endometriosis as the disease (since endometriosis is more than lesions, as I talk about in my book), the symptoms of the disease have gone.

Partial remission means you’ve cleared up a lot of the symptoms, but still have lingering issues. This may be because you still have work to do (like maybe getting rid of SIBO, reversing malnutrition, or getting surgery), or it may be because of issues that are irreversible, such as organ damage, scar tissue, a botched previous surgery, or other issues that are here to stay.

You may also have associated diseases such as other autoimmune damaged tissues, organs, or specific mechanical issues that mean you may not be able to find that 100% remission we all deserve. It’s not fair, but finding partial remission is still better than chronic suffering.

How Do You Find Endometriosis Remission?

Some women find it easier than others. Perhaps a woman you talked said they “used to have endo, but it disappeared after kids,” or even a friend who went gluten-free, and that alone remised her endo symptoms. Something along that line.It’s true that some women can find remission with little effort.

Then there are those with complex cases that may require a lifestyle overhaul…like me. Diet, sleep, stress, movement, chemical exposure, they all make a difference in how the body works! Surgery may also be necessary for some of us to get the level of remission we need.

Endometriosis Remission Can Come and Go

If there was a cure for endo you wouldn’t have to change anything in your life but your endo would be gone. Gluten? yes please! Stress? Absolutely! Forfeit sleep for binging on Netflix or tequila? Duh!

Keeping remission, on the other hand, means you’ll have to create a new life that balances your body enough to keep the symptoms where they should stay - on an old dusty shelf. That’s also why healing from endo is no crash diet, it’s a complete re-creating of your life, and why it’s important to make that lifestyle sustainable rather than miserable.

my new life has to include copious amounts of 'cruise time’. ummmm, no complaints here :)

As a real life example, I myself have been in full clinical remission of endometriosis for over 8 years. I was lucky to have an early diagnosis that preserved my organ function and health and may be why full remission was possible for me, even without a specialist excision surgery.

To stay in remission I know I have to prioritize sleep, happiness, food, laughter, being outdoors, being active, and reducing stress as much as humanly possible (which is why I’m always off social media). I eat liver. I binge on veggies. I love the sun + beach. I walk barefoot 3 miles every day. I am vigilant about remaining present with my son.

I have no doubt that if I went back to my old lifestyle of frantic living, gluten-free goodies, copious wine consumption, and over-exercising, the endo would creep its way right back. This is the reality of remission.

And still, there’s no “for absolute sure” the endo won’t come creeping back. Who knows, right?? But for now, I’ve found a great happy spot of health and wellness, and I aim to make this my new normal. I now love life, and that’s the point.

Why it’s important to allow for the conversation of remission

Remission is a loaded word in many ways, and sometimes I wonder why I use it. It has the possibility of getting some women’s hopes up who may not be able to achieve full remission, and it makes some people angry (like the woman I referenced at the beginning of this post).

So why I chose to continue to use this word is thus:

It allows all endo-suffers to understand remission may be possible, and that it’s a goal to shoot for. Let’s replace the tagline of “there is no cure” with “I’m aiming for remission.”
It reminds doctors of the pressing need for early interventions or diagnosis to preserve fertility, organ function, and more.
It opens the door for our endo community to engage in a dialogue with those who've achieved full or partial remission (also called successfully managing symptoms) in order to learn from them! We’re all in this together, and by spreading personal stories of hope, healing, and positive movement, we may really impact another woman somewhere in the world who can benefit from what you’ve learned. I’m hoping science comes to our rescue as well, to really investigate what remission looks like when achieved (like, do we still have lesions but they just don’t bother us anymore? Or all they all gone??)

So the next time someone says to you “I used to have endo”, I beseech you to approach them with the mind of a scientist and sister! Ask them how, what happened at that time, was it spontaneous remission or did she discover an issue and address it (like chronic stress?). Even if she doesn’t hold the golden ticket to your own endo, you’ll be one step closer to finding your own path to wellness.

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]