The below Endometriosis remission story has been shared by Katie of the most beautiful website (website crushing!) HealEndo.com . She has just launched her new book ‘The 4-Week Endometriosis Diet Plan.’
No one tells you remission may be possible when you get diagnosed with endometriosis. Au contraire. Upon diagnosis you hear the worst, be it from doctors or online, or maybe you hear the incorrect advice to get pregnant to “cure” it. But no, remission is not a word that is often uttered during basic endo conversations. This is part of the devastating feeling of the disease, and also why you feel like you’ve found nirvana if one day you yourself achieves remission. This is my story.
Nonetheless, I’m happy to say I’ve recovered from a life of chronic pain, chronic fatigue, and chronic gut issues stemming from my severe endometriosis symptoms for many years. Finding clinical remission is the reason I do what I do today – work with other women from around the world battling with endo – and I too hope to spread the word that remission or partial remission is absolutely possible.
My Story: The Diagnosis
My own endo-story started at 23 after pelvic pain came on so suddenly and so intensely I thought I was dying. For me, this pain wasn’t associated with my period, so I didn’t even consider endometriosis – it was a deep, overwhelming pain that followed me around everyday.
I was oddly lucky because, being on a small island, my local doctor had seen endometriosis many times before and suspected this was the case. Many women wait over a decade to be diagnosed, and I feel so incredibly blessed that 6 months of tests later my doctor came back with his diagnosis of endometriosis (side note: you need a laparoscopic surgery to officially confirm this, but his assumption was based on the blood and adhesions in my pelvis the MRI had picked up).
The solution to endo is the worst of all: I was told there is none. What I had to look forward to was years of pain that I could only mitigate through synthetic hormones, pain killers, lupron, or maybe eventually a hysterectomy. Oh, it’s possible I couldn’t have kids too. This isn’t what a 23 year old hopes for at a doctors appointment…
The New Normal
The diagnosis was really only the first part of my unravelling. The combination of birth control and high doses of NSAIDs started really messing up my stomach, so I was also put on antacids to control the stomach pain. All of this wreaked havoc on my digestion and energy levels and I felt miserable. My boyfriend suggested I look into diet changes, which I found kind of funny at first (change my diet to heal my organs being stuck together?? Get real) but honestly I was willing to do anything. I stumbled upon this diet called the “endometriosis diet” where you cut out meat, dairy, gluten, sugar, coffee, and alcohol. You girls know it. Welcome to deprivation-central.
Dietary changes are hard when mac ’n cheese with broccoli is your favorite “healthy” food, so I started my journey by cutting out gluten. THIS WAS NOT EASY, but luckily I was able to really master it thanks to my roommate who was celiac, and she helped be see items with hidden gluten (like those darn “corn” pizza crusts I loved so much) and I learned a gluten free pace of life. That helped me tremendously.
But as much as it helped, it wasn’t my solution. Gluten free was definitely a piece of it – one I still abide by today – but it was only a part of the whole package, especially since I had replaced processed gluten products with processed gluten-free products. Not good for healing. As the pain progressed, I was popping ibuprofen like candy, and I needed to get surgery a year and half after my diagnosis. What type of surgery? Laparoscopic with cauterization. Recovery was terrible and the pain came back within 10 months. 10 MONTHS!
As the pain came back I cut out other things: soy, my beloved dairy, alcohol. I felt like I couldn’t cut out coffee because I was so exhausted all the time it’s the only thing that kept me upright. I had lost a lot of weight and couldn’t keep it on, my skin looked pale, and my hair and nails were too brittle to grow. I got chronic sinus infections and my shoulders were so tight from all the stress I kept throwing out my neck. My endo belly was huge, every day, and I felt like I would pop at any moment. I was really sick at this point, sicker than I realized since the decline had happened slowly over the years. Somehow it had become my new norm.
After two more years the pain had creeped back enough that I needed another surgery, but this time I knew enough about proper surgeries to be my own advocate. My insurance wouldn’t cover any specialist excision surgeon, but I was able to find a more competent doctor on Oahu who treated me well, didn’t cauterize, and my recovery was a thousand times better than my last surgery. As every endo-advocate says, it really pays to be an informed patient and know what you need from a surgery.
Reclaiming my Life: Gut and Nutrition
There’s nothing like being sick and tired of being sick and tired to motivate you. I was sick of doctors continually prescribing me meds to cure the symptoms of my meds, sick of not being vibrant at 28, sick of being too tired to even smile. Worst of all, my endo symptoms started returning AGAIN after 8 months. I was scared, angry, nervous, and totally totally totally ready to get to the root of the problem once and for all. I wanted a baby gosh-darn it, I wanted a normal, healthy, happy life at 30. Was that too much to ask? Somehow anger at the unfairness of the situation gave me the energy I needed, and the fire inside me was lit.
With a renewed vigor, I began studiously studying endometriosis and connecting the dots between the incurable and the reality. Finding that endometriosis is an immune-related disease more than a hormonal disease blew my mind, it changed the entire way I was approaching the disease. With an immune related issue, you can incorporate many diet and lifestyle approaches to help re-regulate the immune system, calm the inflammation, and heal from within. It allowed me to understand that a holistic approach wasn’t just helpful for endo like mine, but necessary.
Finding a new perspective what endo is changed my healing perspective as well, and why I list “LEARN” as the first of 5 pillars on may site. Understanding about Terry Wahls, MD, who healed her advanced M.S. through diet and lifestyle (the Wahls Protocol), and how many millions of autoimmune sufferers have put their autoimmune diseases in remission through the Paleo AIP diet + lifestyle is truly inspiring. If they could do it, why couldn’t I? I read about Weston Price who travelled the world looking at ancestral diets and how these healthy people ate loads of organ meats, raw milk, shellfish, fish eggs – basically every food I thought would kill me. But…. but although Western medicine had kept me alive, I was so sick of the life I was living I was ready to try something completely new. It was time to go the full blown holistic route, so I thew out my birth control on the spot (my body hated that stuff), stopped my habit of preemptively swallowing ibuprofen at every small pang, and had an internal renaissance where I vowed to figure this out once and for all.
I also forked over money to go to a naturopath which was a godsend. She ran numerous tests that showed I had severe gut permeability, which was probably why I was also so nutrient deficient as well as allergic to so many foods. This opened up new solution-oriented doors for me as I began to see a way out, that there were things wrong with my body aside from the endo that I could actually fix through diet and lifestyle! That alone was more hope than I had over the previous 5 years of being told there was “no cure”, and I was so excited to see incredible progress with my digestion.
For those who have dealt with chronic fatigue I can only describe this as a feeling of the “clouds parting”. It was a sort of spiritual experience where, as the energy I forgot I could ever have again came back, I realized I actually had the power in my hands to start healing myself. That angry energy turned to excited energy, and I kept on the path.
Reclaiming my Life: Alignment work
As I gained healing confidence I simultaneously was working on body alignment. I had chronic running injuries and, from being ill for so long, I ended up pretty bio-mechanically crooked and weak. I found Katy Bowman, a biomechanist who helps us “average joe’s” understand how to move properly. What I learned is that my movements, or lack thereof, could be directly impacting my endometriosis by inhibiting blood flow to my pelvis. It made sense, so I started working on my tight, inactive hips, glutes, and core and indeed began to see a shift in my pain levels associated with endo. This was a shock to me since I had always heard about diet helping endo, but never about body mechanics.
Katy Bowman’s approach sat well with me. She advises to stop exercising and start “moving” more, little movements and big movements and, of course, the most ancient movement of all: walking. So I started walking every day, with a goal to get to 5 miles, while also doing corrective exercises to learn how to walk correctly. See, I had learned big, important muscles in my body (like my inner thighs and glutes) were completely inactive and weak. In order to bring circulation into my core and pelvis, these big guns of movement needed to start waking up. To de-stress, I would unplug from everything, leave my phone and ipod, and just walk through the forest for an hour letting myself have a conversation with my long lost friend: nature. After a few months found myself easily being able to walk 5 miles, and each month after that I felt my previously atrophied core becoming quite strong without ever feeling overwhelmed with “working out”.
Now I was on a role. My body was feeling stronger, I was actually digesting and assimilating my food, my nails weren’t breaking and my hair was growing, and my energy levels were soaring. There were definitely times when issues arose, but I was diligent in researching the reasons from a non-endo perspective and could usually find answers that way. Symptoms like my “endo belly” – a term for the enormous, painful, and embarrassing bloating associated with endometriosis – started disappearing with the addition of heaps of veggies, probiotic rich foods, digestive aids, and actually chewing my food to mush before I swallowed.
The lifestyle I developed for myself wasn’t a lifestyle of deprivation like the “endo diet” I tried before that, it was truly a lifestyle of infusion. I ate local, delicious, nutrient-dense foods that made me feel connected the the land and animals, I gardened, walk in the forest, did squats in the kitchen while laughing with my husband, and ate so much fat that craving sugar was a thing of the past.
Two and a half years after I started my “healing journey”, I would say my body was in full clinical remission. Even more, my husband and I were finally over-the-moon to find out we were expecting our own bundle of joy – even after all the endo, after being recommended a hysterectomy, after many years of infertility. If this isn’t a “cherry on top” moment of healing, I don’t know what is.
I hope my story offers you hope
They say there’s no cure for endometriosis, and it’s true that once the genes associated with endo are turned on you can’t turn them off (yet). But, what I know based on my own experience and that of many of my clients is that it’s possible to heal the symptoms associated with endo to the point you feel as if you don’t have it or at least that you can live a normal life – this is what remission or partial-remission is. Maybe I still have endo lesions, maybe not, but I don’t have a single symptom of endo or any chronic illness symptom that I battled with for decades.
If you’re looking for your own path, I hope you keep on going! I deeply believe with the correct approach, with looking at the whole body system and not just one aspect like diet or movement alone, there will be things that click into place. One after another they will all add up until you’re noticeably improved. Also, no two recovery stories will be the same, so listen to your body first before following in footsteps of another. Lastly, healing may be a huge journey (mine took 2 intensive years after all, not counting the 6 years before that laid a foundation), but an exciting one. Especially at the end when you wake up one day and finally feel, well, pretty great 🙂