Knowing what to do after an endometriosis diagnosis is overwhelming. Here are the steps I wish someone had told me to take in pursuing healing:
Finally getting a diagnosis on a piece of paper often feels like it might be the light at the end of the illness tunnel for so many of us. I know it did for me. But we often find ourselves struggling through “healing” just as much as we struggled through sickness + that struggle can cause anxiety over choices, fear about the future, shame about your inability to fix your body, or engage with your family in the way that you want to. Knowing what to do after an endometriosis diagnosis is hard, but it doesn’t have to stay that way!
If you’re here because:
- you’ve been diagnosed + aren’t sure where to start or what to do next…
- you think you could have endometriosis, so you want to start working on healing…
- you’ve been diagnosed + treated, but you’re still struggling…
- you have some other chronic illness or chronic symptoms that you want to improve…
You are in the right place. Please know that you are safe here. You are heard + you are understood. I am not a doctor, but I am a fellow endometriosis and chronic illness warrior who fought her own corner for YEARS before she figured out how to love her body back to life. And I want you to walk away from this article with all of the things that I WISH I had known from the moment that I heard my diagnosis for the first time.
What NOT to do after an endometriosis diagnosis
I am just like you. When I was diagnosed in 2019, I thought I was finally going to turn the corner. That my 17 years of struggle with digestive symptoms + fatigue, with period problems + food intolerances would end. But from the moment that I walked out of my doctor’s office with a name, I just did all of the wrong things.
In the moment I totally thought these “steps” were what I needed to do + how I was going to get better. I didn’t have a guidebook for how to navigate HOW to plan this season of my life, so I went with what I knew. I went with the culturally accepted blueprint for healing. Do any of these sound familiar?
- I immediately bought all of the top-rated books on amazon + dove in.
- I spent hours on Google searching for drastic lifestyle changes I could make.
- I bought all of the supplements that the internet told me to.
- I read the articles about infertility + surgery + all of the things.
- I considered birth control and other mainstream treatment techniques.
- I eliminated all sorts of foods from my diet.
And do you know where this stuff got me? Desperate, depressed + buried in an internet browser full of everyone else in the world’s opinion of what I should do with my life + my body. Oh and also a long list of all of the horrible things that would happen to my body if I didn’t do something immediately like cut out my uterus, pump my body full of hormones or freeze my eggs.
If this is sounding familiar, don’t lose hope. I promise you there is a different way. There is a more thoughtful, intentional, purposeful way of navigating what to do after an endometriosis diagnosis + it looks nothing like me telling you what to do with your body. Let’s get into it:
The Missing Piece
Even though I was doing all of the “right things” at the start of my endometriosis journey, I was actually missing one of the key ingredients to real, sustainable change + a move towards being more well.
I was missing ME.
I hadn’t stopped, not even once, to consider how my life affected the choices that I should or shouldn’t make. I didn’t consider my capacity, my mental health, my budget, my fears, my values…any of it! And I think that’s largely due to the way that the medical community approaches healing. Doctors + medicine + surgery are incredible + life saving + not something to feel ashamed about pursuing. In fact, I am 100% for them IF the solutions they offer are right for you. What I do have a problem with though, is that so many of us don’t hear that message. We hear things like:
- your only option is “birth control” or a “hysterectomy” or “hormone therapy”
- there isn’t anything we can do
- we can’t help you unless you….
- it’ll get better if you have babies
Modern medicine approaches the body as a physical being + they largely treat your body as different systems. If you have a headache, they treat a headache. If you have gut trouble, they offer you medication for your diarrhea. But, our bodies weren’t designed that way, right? They are WHOLE bodies + things like our environment + our emotions + our life experience really do affect how our bodies feel.
Don’t believe me? Have you ever gotten a stress headache? That is emotion becoming physical. What about a nervous tummy when you have to speak? Emotion becoming physical. What about anxiety on nights when you can’t sleep? Physical becoming emotional! It goes both ways + is so essential to understanding how to best approach what to do after an endometriosis diagnosis.
When I’m looking at MY options for MY body, why would I not consider all of the realities about my life and body as part of the healing equation? Why wouldn’t you?
What to Do after an Endometriosis Diagnosis
1. Remember that this is a diagnosis + not a life sentence.
Because endometriosis is technically an incurable, chronic illness, it can be easy to let our minds slip into a dark place once we know that’s what we have. But listen here, sweet friend, your illness is not a defining part of you. It’s something you have, not something you are. Start speaking life over yourself, your body + your future. (These affirmations might help.) This disease might be something that’s present in your life, but it is not your life. Days full of joy, peace + purpose are absolutely possible despite your endometriosis, I promise! (Need some encouragement about what’s possible? Read this!)
2. Before you change a thing, choose a plan, or make any decisions, get clear on your goal – know your WHY:
The treatment options for endometriosis can be pretty life-altering, but it often feels like they’re the only way. One of the things that I WISH I had done after getting my endometriosis diagnosis was to take a good, hard look at my life + decide on what my goal was BEFORE I dove into making changes.
Here’s what I mean by that: society has all sorts of things that it tells us we SHOULD be + that we SHOULD care about: money, success, beauty, thinness, becoming a mother, etc. So, while many of us might believe that our why for making our choices about treatment is healing, or to feel better, deep down we actually have some other motivations going on too. Motivations like losing weight, like clearing our acne, like getting promoted or whatever!
There isn’t a space for shame on this journey, so don’t beat yourself up if you don’t love the things you see when you look at your deeper motivations. This practice is really about awareness. Because when we start making choices about what to eat, how to move, what treatments to pursue, we are going to make VERY different choices for our bodies based on what our deepest motivations are. If your goal is to be thin, you’re going to eat differently. If you goal is success, you might push your body harder than you should. Understanding our mind, emotions + motivations for making our choices can help us become more aware + make better ones if healing is our real goal.
3. Make a list of your non-negotiables FOR THIS SEASON.
Your healing journey is just that…a journey. And what you need to know right after a diagnosis is hopefully not what you will still need 6 months or 6 years in. In the same way that what you ate or wore or did with your days when you were 5 is not the same as it is now + there is NO SHAME in either of those places. You have to be 5 before you can be 50. You have to start your healing journey at the beginning.
To start, really consider where you are in your life. How is your sleep? Your mental health? What type of free or flexible time do you have to be making big changes? What about your budget? Your stress levels? I’m asking because these things really do matter.
When you’re choosing which treatment options or life changes to implement, if they’re going to work, they HAVE to make sense for this season. So, similar to knowing your why, really look at your life right now + decide on the things that absolutely have to change + those that absolutely can’t.
Do you need to make more time for sleep? Great, add it. Are you unwilling to give up your caffeine in this season? Okay, add it. Maybe exercise feels manageable, but birth control is completely off the table for you. Great!
Examine this season of your life + figure out your capacity for change + walk into the next steps knowing that this season too shall pass + you’ll be on to the next one. But you have to start where you are + your treatment has to make sense for your real life.
4. Find a team or a practitioner who respects your values + can help you navigate what to do after an endometriosis diagnosis.
Depending on what type of treatments you are looking to pursue, there are all sorts of professionals that you can add to your team! There really isn’t a right or wrong way to choose to pursue healing, but there definitely is a right or wrong way for YOU right now.
Finding a doctor or a coach or a dietician or therapist who respects and understands your choices is so life-giving + also way more effective. (If you aren’t sure where to start, Nancy’s Nook has an entire list of Endo specialists around the world!) Investing your time and resources moving forward together will get you to a space of healing way more quickly than battling each other every step of the way. And you shouldn’t have to compromise who you are, what you believe, or your values to pursue effective treatment.
If you aren’t down for hormonal birth control, finding a doctor who respects you + will work with you on different options without shaming or bullying you into changing your choice is life-changing. If you need someone to walk the day-to-day with you, finding a coach to help you navigate these steps + your next ones can be the best investment ever. (This is literally what I do! Click here to find out more about my system + working together.)
I know that investing in a team can be scary, but you weren’t made to walk through life alone…chronic illness journey included.
5. Have grace.
If I could leave you with one last piece of the healing equation that I WISH I had known, it would be to have all of the grace in the entire world for yourself + the people who love you. Healing + the journey to getting there is never linear. You will doubt yourself + change your mind. You might try something + it doesn’t work the way you want it to or it suddenly feels like too much + you can’t continue. That’s okay. It’s not failure.
The goal of making choices + making changes is not to be perfect. The goal is to find more joy + more peace + more purpose + to feel better + to be able to participate in your real-life again, right?! Beating yourself up over something is never, ever going to get you there. So, if something doesn’t work, let it go + move on! You are doing the best that you can.
Learning to remove the condemnation + replace it with curiosity is the single most effective tool I’ve learned on this journey. My body is not broken + neither is yours, but it is unique + so will be the things that work for it + for you.
So have grace. Have grace for your friends + family as they try to understand what you’re going through. Have grace for doctors who don’t have the knowledge. Have grace for your past self + what you did/didn’t do. Have grace for future you who will get it wrong again because you’re human.
And have grace for yourself now because you’re navigating a road without a map. Remember that you deserve to feel well + self love is a much better guide to help you get there than condemnation.
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