Remission + Endo

We need to talk remission. Need to with a passion. This is because there is so much information and misinformation out there, and this little conversation may make an entire world of difference to someone. So please allow me to elaborate on this somewhat nebulous topic.

R is for remission

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 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 is the truth: endometriosis can’t be cured, but she and her associated symptoms may be able to be put into full or partial remission. Depending on the woman, the process may include a properly done surgery, lots of lifestyle tweaks, a dietary overhaul, addressing the dysbiosis/digestive insufficiency issue (i.e. endo-belly) 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) your worst endo symptoms with the correct approach and a supportive team.

What is full remission?

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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, the symptoms of the disease have gone. Other examples may be older women you’ve talked to who 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. Something along that line. Even though some examples like this may really annoy you, it’s true that some women can find spontaneous remission or even remission with barely any effort.

Then there are those with complex cases that may require a lifestyle overhaul, like me. And it’s important to note that while surgery may rid you of the very specific endometriosis induced symptoms, I have worked with quite a number of women at this point who have done the excision surgery and totally reclaimed their lives from the endo pain and misery, but are still left with many associated symptoms such as fatigue, severe bloating, gastro issues, or unexplained infertility. In these cases, complete remission would mean dealing with all of these issues as well through diet + lifestyle so they also melt away.

Thus, complete remission from endo means you have been diagnosed with endo, but your new life is no longer affected at all by the disease or her many associated symptoms. You are free.

What is partial remission?

This is basically the same thing as symptom management. It means you’ve cleared up a lot of the symptoms, but you haven’t achieved full remission. This may be because you still have work to do (like maybe getting rid of SIBO, reversing malnutrition, or getting a 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 will find that 100% remission we all deserve.

But that’s no reason why a woman in this boat wouldn’t aim for partial remission, as in reducing the constant spread of more endo, treating their digestive woes once and for all, regaining their energy, and more, all to find a place of balance where the endo, the pain, the fatigue, the belly, are no longer ruining their lives. Aim for that happy spot of nourishment, love, laughter, and living, even if it’s not as totally perfect as you dreamed.

Remission can come and go

Here’s the thing, 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!

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 :)

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

As a real life example, I myself am currently in full clinical remission of endometriosis. 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 may 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 they may feel like all is lost. If this is you, please know you’re still on the perfect path for you, no matter what! Digging in to as many associated symptoms as you can will help make life bearable, even if there are issues you’ll have to learn to live with otherwise.

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

  1. It allows all endo-suffers to understand remission may be possible, that it’s a goal to shoot for, even if full remission isn’t a reality.

  2. It reminds doctors of the pressing need for early interventions or diagnosis to preserve fertility, organ function, and more.

  3. It opens the door for our endo community to engage in a dialogue with women 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.

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