(Adapted from the "It Hurts to Mom" podcast 2/10/2023)
Dr. LJ Johnson
Dr. LJ Johnson is an endometriosis coach and holistic endo expert, and the host of the Wholistic Endo Expert Podcast.
Tell Us About Your Chronic Pain
It’s almost like let’s talk about when I didn’t have pain because I feel like your girl has had some pain and some suffering about all of my life. It took me 16 years to get properly diagnosed with endometriosis.
That ain’t a typo; that’s the real deal. So 16 years of feeling like I was crazy. Sixteen years of doctors trying to convince me that I was crazy. Sixteen years of me thinking maybe I am crazy—maybe there’s something wrong with me—not knowing exactly what was going on with my body, managing chronic pelvic pain, murder scene periods, body pain, fevers. I mean, when my period came I was bleeding out of my nose. I’m talking like everything was falling apart for me.
That was 16 years of my world. Now that was hard. Don’t get me wrong. But once I got the diagnosis, it was kind of what I call that Throat-Punch Thursday to where, OK, I have a diagnosis, but there was no cure. So at that point—that’s why you see that more energetic LJ—because I was like, look here, I have got to take my power back. I’ve got to take my life back. Despite the fact that I have a chronic illness, that’s one thing, but I still want to be able to have quality of life and that is where I really had to shift my mind and shift everything to manage not only the diagnosis of endometriosis but chronic sinus infections, asthma, allergies, all of these things that were attacking my body and just putting me under this huge autoimmune load.
What Treatments Have You Tried? What Worked and What Didn't?
So let’s talk about what didn’t work. I just did a podcast about this...first, I’m going to rewind.
Let me define endometriosis because some of you are listening and you’re like, “endo-super-cali-what-what?” I know, it’s a long one! So endometriosis is uterine-like tissue found outside of the uterus. It is hormonally driven. It creates its own hormones. These lesions cause chronic systemic inflammation throughout your entire body, and they have autoimmune-like factors. So it is not a rogue period, it’s not just that you’re a weak woman and you need to "toughen up, buttercup"—the things we’ve been told. It is not a reproductive disorder.
So for me, that was debilitating. Yes, I had the chronic pelvic pain. Yes, I had the murder scene periods. But I also had these horrible migraines...hormonal headaches. My vision would mess up. I was, like I said, having nose bleeds, cramping, bleeding. All of these things 24/7 outside of my cycle. The biggest thing that I will say that I tried that did not work was me believing the lie and the misconception that if I go into medically-induced menopause, that I’m going to turn off my period and my world is going to be a better place. For me personally, and this is something, like I said, I’ve talked about openly over and over and over again, that did not work for me. And I really want to lean in on that because many people diagnosed with endometriosis, or maybe you’re like, “I don’t even have a diagnosis of endo, but LJ, your story sounds like mine,” here’s the thing—turning off your period is not going to cure or turn off endometriosis. It may help with quality of life. You know, maybe not having a period is going to help, but it's not going to get to the root of the problem. It’s definitely not an end all be all cure. Another thing that I tried was hormonal birth control, which many of you I’m sure have experienced. As soon as you say period pain, the doctor’s like, “Aha! I have got just the sample of birth control or just the prescription.” Here’s the thing—turning off your period, going on hormonal birth control—once again, may or may not help with quality of life—but it’s not going to put your endometriosis into remission. The other thing that I did that did not work is over-supplement myself. I thought, “You know what? I’m not doing these pharmaceuticals anymore! I’m going all-naturale. And then I was taking like 52 supplements—yes, that’s an exaggeration—but I was taking a bunch of supplements for a bunch of symptoms rather than getting to the root of the problem. Now, what did work for me to put my endometriosis into remission and give me the energy and the life I have now is figuring out my food triggers. As unsexy as it is, a lot of us really need to look at an anti-inflammatory diet. We really need some nutrition and dietician information and someone to give us exactly what we need to eat because many times, when you’re managing a chronic illness, you have this inflammation—this fire that’s always burning. The food and the fuel you put into your body is either going to damper that fire or crank that baby up. And so for me personally, even though I was, you know, coming from a background of fitness and nutrition, a registered dietician, etc.—all of those accolades—I was just thinking that eating clean was going to help put my endo into remission and it was not. I really needed to identify those trigger foods; heal my gut was #2; and the other thing which a lot of people don’t like to talk about is removing the toxic burden from your body. Now for me, that was using cleaner products—not using Clorox and Lysol and all those name brands, but getting some things that were more biodegradable, that were healthier for the environment, that were less of a toxic load on my body. Small things like getting away from those candles. We all love to smell good, and the snuggles that come from candles, and laundry detergent, and Dawn and Gain and all that stuff. However, that is a toxic load and burden on our body.
How Are You Managing Your Pain Now?
So, to be honest, I have zero period pain whatsoever.
I have been able to put all of my endometriosis into remission. So there are different things that people can do. I will say that the golden standard to have endometriosis removed from your body is excision surgery. Luckily for me, I’ve been able to put mine into remission where I have not needed to have excision surgery. Neither have I had a hysterectomy. So I have made substantial—I repeat—substantial—lifestyle changes when it comes to my nutrition, when it comes to removing stressors from my body, balancing my hormones, getting rid of toxins, underlying infections. So zero things as far as pain. Now the one thing that I do have to manage is the autoimmune-like factors. Really working on my immune system. I may not have any pain, but your girl over here is working overtime making sure that I support my gut health and my immune health.
How Do You Keep Up Such a Positive Attitude?
Really, what I’ve realized and what I do with my patients is—I’m going to lean in on this one—yes, we have a chronic illness but we have to get to a point where we’re not defined by the chronic illness, right? I may have the diagnosis of endometriosis, but I am not endometriosis. You may have asthma, fibromyalgia, lupus, fibroids, whatever, but you’re not that diagnosis. So the basis of what I do—not only with my patients but with myself—is that mindset shift. That I am more than a diagnosis. I deserve—Lauren, you deserve—everyone listening—we deserve quality of life. It just may look a little different because of our diagnosis. So that’s the main thing, right? Is really shifting that landscape of how I look at a chronic illness, how I look at my quality of life, and realizing that I do deserve that quality of life. It’s OK to not be OK, but it’s also OK for me to empower myself, advocate for myself, grab a toolbox, put the tools I need into it so that I can have an amazing life.
How Do We Get Out of the Mindset of Being Defined by Our Illness and See Our True Worth?
The biggest thing with that is community. And I want to talk a little bit about this because some of you are like, “Oh, I’m already a part of these Facebook groups, or whatever”. Let’s be honest—some of these Facebook groups for whatever illness you’re managing can be very positive. On the other hand, some of them are bringing more negativity into your landscape that you don’t even need, right? You may not even wake up as negative, but then you see all of that stuff in your news feed. For me, having that community really helps me stay focused. There are going to be days when I wake up and feel amazing and I’m on top of the world, and I’m like, “Ooh, Dr. Johnson is here today!” Then there’s other days when I’m just like, “Dear God, why me? What’s going on with my body?” and I’m not feeling it. But when I have that community, that really does help me stay empowered. It also is nice to have a community. Let’s be honest, when you’re dealing with a chronic illness, not everyone’s going to get it. Having a community that actually gets you is huge. But on the other hand, what I will say for some of you is that maybe you have a community but you’ve been in that community for too long. You’ve outgrown that community. Right? Maybe you’re at a part of your healing journey where you’re ready to take it to the next level, and maybe people in that community are just now getting diagnosed and they’re like, “What green smoothie do I drink to make it all better?” You’re clearly in different places in your journey. So finding a community that can support you is huge. It’s also realizing and giving yourself grace that not every day you’re going to feel amazing. Let’s be honest. People without a chronic illness don’t feel amazing every day. So we need to give ourselves grace. I feel like we give grace to others but we don’t really give grace to ourselves. We beat ourselves up because we can’t white glove test our house because there’s dust in the house. We beat ourselves up because there’s dishes in the dishwasher that haven’t been unloaded, you know. We’re feeling some kind of way. And it’s OK to really prioritize. And that’s also part of advocating for yourself. Letting people know, like, “Hey, I’m in a flare. These are some things you can do to be supportive. Or, “Hey, you know what, I’m in a flare. I’m feeling drained. I need to refill my cup. I need to go lay down. I need to rest.” I think those are all things that are very important.
Do You Ever Still Struggle Not to Apologize for Things You Can't Control?
I’m on the struggle bus 24/7 when it comes to that. Because it’s hard. We don’t want to say no to other people. We don’t want to be the ones that look unreliable.
Two things. This is the deal. You have a chronic illness. The chronic illness is what’s unreliable—not you. That’s the first thing we have to realize. Secondly, it’s OK to say no, and that’s a whole sentence. You don’t have to say, “No, because XYZ, 123”; “No, I wish I could” and give this long ad lib. “No” is “no”. And so what I realized is that apologizing for having a flare and not being able to do this, that, and the other, really wasn’t doing them any good because they didn’t really understand what I was going through, number 1. Number 2, then I’m walking around with this big cross of guilt—“Oh gosh, I had to let Lauren down”; “Oh my god, I had to let my kids down”; “Oh, I had to let my ex-husband…” It’s just, like, stop all of that. Stop apologizing for where you are in your journey and live your best life and advocate for yourself.
And it’s a journey. It doesn’t happen overnight. It is a struggle. It is a constant journey, but it’s absolutely worth it.
What Motivates You To Stay in This Positive Mentality?
My community. The fact that I had to hide in plain sight for so long in debilitating pain with no one to talk to, no one that understood. This is why I do what I do. Yes, sometimes people are literally sick of me because they see me on Instagram and they’re like, “She’s so happy. She’s so bubbly. This can’t be real.”
It is real. But here’s the thing: I share my journey because I used to be that person stuck on mattress island. I was that person who had an amazing 2-story home but couldn’t sleep upstairs because my legs hurt so bad or I was in pain. I had to sleep downstairs on the couch. That was my actual bed. You know, I’ve been there and so being able to be transparent about my journey, that’s what motivates me, because my audience—when you get those messages where someone’s like, “Oh my gosh, that’s just what I needed to hear”—that is why I do what I do.
Why Did You Decide to Become an Endo Expert?
So here’s the thing: I was suffering. So getting through my own healing—it was one of those things where I was like, “Ooh! Thank God I made it to the other side.” But then I’m like, “What about all those other women out there that are having period issues, that are having hormone issues, that are feeling defeated, that aren’t able to go to work?” I was a single parent of two children and there were days I’d have to text a neighbor to get my kids ready. Do you know how humbling that is? When you look like you’re fully capable because you have an invisible illness, and have to call or text another mother, who has her own children to get ready, and be like, “Hey, by the way, can you come work a miracle over here and help me with my own children?” That was my world and I felt very isolated, kind of like you said, we had these great jobs, these great lives, and all of a sudden life changes. And so when I was able to get the diagnosis and heal myself naturally, it shifted my entire practice. I’m just like, “I can’t sit on this information. I can’t sit on what turned my world around.” It almost brings tears to my eyes as I think about it right now. It’s like I needed me 15-20 years ago, and I didn’t have a me. I didn’t have an LJ. I didn’t have Instagram and podcasts and all of that. So there was no way I could heal myself naturally, restart my private practice, and not shift my entire focus.
What Advice Do You Have for People Struggling to Manage Their Chronic Pain?
You have to surround yourself with a community. And I’m going to say this: whether you work with me or anyone else, you have to work with someone. When you’re managing chronic illness, we spend a lot of time what I call throwing spaghetti at the wall. Throwing supplements at this. Trying this juice. Trying this smoothie. You spend all your spare time when you could be building relationships, enjoying time with your family, doing whatever—skating, fitness—whatever you could be doing, right? Watching movies. You’re searching Dr. Google. You’re on WebMD. You’re on Healthline. You’re trying to find all of this. Find someone that’s going to get you straight to the money. Stop trying to do it on your own. It is overrated. I talk about this on my podcast as well—The Wholistic Endo Expert—I tried to do it on my own. I did. I wanted to be that person who could be like, “Oh my gosh, I figured it all out on my own.” I’m telling you right now it’s overrated. Work with someone who can get you straight there. Do not waste your time, your resources, your money. It’s defeating when you’ve tried a million things under the sun. You’ve tried to eat clean. You’ve done fasting. You’ve done every keto, paleo. You feel like, “I’ve done everything out there.”
You really need to find someone that can help you streamline your healing journey.
Where Can We Get More Information about You?
Instagram is my favorite place to hang out. It’s @ljs_powerhouse. But you can also go to ljspowerhouse.org. Lots of great information on there—my blog; I also have a podcast—The Wholistic Endo Expert Podcast—and we talk all things endometriosis, PCOS, fibroids, hormonal imbalances. All the not-so-sexy stuff, but trust me, you learn something every time and we make it a little sexy.
What about You?
Are you struggling with being defined by your chronic illness? Follow Dr. LJ @ljs_powerhouse or me @ithurtstomom for encouragement and inspiration.
Affirmation
Today I will remember...
I am so much more than my diagnosis.