I remember when I first heard the term “endo warrior.” It was shortly after I had met with my doctor when she had first suspected endometriosis based on my ultrasound. At the time I didn’t even really know what it was. I had heard of it, but knew next to nothing. That day at the doctor I learned very little about endo. I remember my doctor asking me if I was in pain. At that particular moment, being that I was not on my period, I was not so I told her no. I had no idea at that time that there was even a correlation between endo and the intense period pain I had been experiencing for years. I do remember feeling afraid. I could see as they were doing the ultrasound what looked like a large dark blob covering most of the screen. Being that I do not have experience in reading ultrasound, all I knew was that something didn’t look right. What I was looking at was a large endometrioma on my right ovary.
While your doctor may be able to see something on an ultrasound (although this is not always the case), it is important to know that endometriosis cannot officially be diagnosed without a laparoscopic surgery. I am thankful to have had surgery with a very skilled surgeon who specializes in endo in August of 2022. More on that later!
So what is endometriosis exactly?
The basic explanation of endometriosis is that it is condition where the endometrial lining that normally grows only inside of the uterus grows outside of the uterus, usually on the ovaries, fallopian tubes, and other pelvic tissues although in more rare occasions it can grow in other areas of the body as well. The exact causes are unknown, but it is thought to be an inflammatory disease with an immune dysfunction component. Common symptoms include painful periods, pain with bowel movements and/or urination, pain during or after sex, heavy periods, bleeding between periods, and infertility.
And now back to my personal journey…
I started to do some research on my own and find out more about what endo really is. That is when I started to hear the term “endo warrior” referring to people with endometriosis. At the time I’m not sure I fully understood it, but I have come so far since that day. I learned from others who have walked this journey before me. I have learned from my own trials and errors and experiences. And I hope that me sharing my journey will help to pay it forward and help someone else in return. If writing this helps just one woman find the confidence to begin their own journey towards healing it will have been worth it.
So let’s dive deeper. That first doctor I had seen was in fact a fertility specialist and based on that ultrasound as well as many other labs taken on both myself and my husband determined that IVF was the best route forward for us starting a family. After much consideration (and another year of time waiting it out and hoping things would happen naturally), we did decide to proceed. The challenge with IVF, that anyone who has been through it before will know, is that it involves a LOT of medications and synthetic hormones and while they are necessary for the procedure it can further disrupt your hormones and actually cause the endometrial lesions to continue to grow. Leading up to my egg retrieval in February 2020 I felt so incredibly bloated, tired, and overwhelmed. There were so many injections that went into my body. Let me tell you, IVF is not for the faint of heart.
After the egg retrieval my doctor wanted to put me on medication to “suppress the endometriosis” before we did a frozen embryo transfer. This particular medication works by blocking the production of estrogen, a hormone which is thought to “feed” the endometriosis (the medication is a GnRH agonist). Now I am not a doctor myself and certainly cannot tell you whether or not this type of medication is right for you, however I personally have made a choice to never put this type of medication in my body again. While blocking estrogen production can be beneficial for managing endo symptoms, it also blocks many of the positive effects. So what I experienced from March through May of 2020 (and you may remember what else was happening in the world during that time) was a mini menopause. I had hot flashes. I didn’t have a period. I was 29 years old.
I was one of the lucky ones though, I did get my period back. From some stories I have heard since then some are not as fortunate. If only I had taken the time to do that research before. We finally did our first frozen embryo transfer in June 2020 which failed to implant. I talked to my doctor at that point and asked her if there were any dietary or lifestyle changes I could make before the next transfer because I had already been dabbling a bit in this arena and I was told “whatever you think might help.” Not very encouraging. We did a second transfer in September 2020 which did implant, but ended in a miscarriage in November. I won’t go into the full details of that experience now as that could be a full post in and of itself, but it was a devastating and life-altering experience for me. It was incredibly painful both physically and emotionally. I know any form of pregnancy or child loss is challenging and painful, but at least from my experience it adds an extra zing to that pain when you have invested so much of yourself emotionally, physically, and financially for IVF.
At that point, being 2020 in the middle of a pandemic and running a business that really relies on being in person (my husband and I teach classical ballet), we did not have the funds to proceed with another round of IVF and quite frankly my emotional tank was on empty anyway. I needed a break. My body needed some space to recover. I am a person who needs to keep myself busy mentally and so I started to research. I started to dive deeper into my own health. I decided that this would not be the end of the road for me and I certainly wasn’t going to let a couple of setbacks stop me. At first I found myself more confused than ever with the conflicting information that is out there on the internet. But then it was through this research that I discovered the Nutritional Therapy Association where I enrolled shortly after.
My journey with nutrition
One of the first major changes I made to my health, even before joining NTA, was cutting gluten from my diet and later dairy as well. Gluten can be highly inflammatory for many people and can be damaging to the gut lining and integrity and as you will remember endometriosis is an inflammatory disease with some immune dysfunction component. 70% of the immune system is in the gut. It was absolutely a challenge at first, but my first period that I had after 100% excluding gluten from my diet was like night and day from the one before. I would not go so far as to saying it was pain free, but it was definitely a massive improvement. I consider myself a pretty tough individual as far as pain tolerance, but prior to cutting gluten I was easily at a 10/10 pain level during the first few days of my period. There were many days when I physically could not stand up straight. I would mostly stay glued to my couch with a heating pad and if I did need to get up I would walk hunched over with my hands on my knees. If I wanted to go up the stairs of my house I would have to crawl and usually have to take at least one break on the way up because the pain would be so intense. I dreaded having bowel movements because they took that pain from a 10 to a 15.
Over my next few cycles I noticed a lot of changes. I was still having some pain, but it felt more manageable. Throughout the NTA course I was taking I learned so much about gut health, blood sugar regulation, hydration, inflammation, immune function, and started to piece together how all of these things might be contributing to my own symptoms. I upped my game with my nutrition. I started doing a lot more home cooking. I added more Omega-3 fatty acids to my diet. I worked on managing the stress in my life. I started to get more regular movement without judgment of how intense it was or wasn’t (as a former classical ballet dancer it was hard not to be critical of myself on this front). I did a lot of work on my gut health and stabilized my blood sugar. I discovered some other foods that were correlated with endo flares and worked on replacing those in my diet.
I did admittedly go through a phase of being overly restrictive and cautious with the foods that I was eating, but I quickly realized the importance of also finding balance and keeping that beautiful emotional connection with my food. It is so very important to take care of our mental health just as much as the physical.
Diving deeper into hormones and gut health
Nutrition has been a huge part of my journey, but at the end of the day it was really just the beginning of my healing journey. Since finishing that initial intensive course, I have gone on to study with the International Association for Functional Hormone Health as well as Restorative Wellness Solutions.
Through these programs I have taken deep dives into studying hormones, gut health, food sensitivities, and so much more. I have incorporated the use of functional tests like the GI-Map, which is a stool test helping you get to the bottom of your symptoms and what sort of imbalances might be going on in your gut as well as the MRT food sensitivity test and the DUTCH test to take a look at hormone levels.
I have worked through deep gut healing protocols myself after learning that I had severe dysbiosis (imbalance of bacteria in my gut), parasites, and multiple digestive dysfunctions. In combination with all of the foundational work I have done, this has been absolutely life changing. I found relief from so many symptoms that I didn’t even know were an issue.
Endo excision surgery
Amidst all of the learning, gut healing, and deep healing work I have been doing, I also had a laparoscopic surgery in August of 2022. I did a lot of research first to find a skilled surgeon and in fact went through three doctors before I found one who really listened and who felt right for me.
I connected with my surgeon initially through Nancy’s Nook, which is a wonderful resource for finding a doctor who specializes in this type of surgery.
I’ll be the first to admit, I was very nervous going into my surgery. I had never had surgery before, save the minor procedures of wisdom teeth removal as a teenager and doing my egg retrieval for IVF. This was a different ballgame. This was full anesthesia, multiple incisions in my belly…scary stuff!
I came through okay and the healing process was not too bad as far as abdominal surgery goes. Sure, I was in pain and was very stiff for a while, but at the end of the day I did have some major improvements here.
Now there is a lot of talk out there about whether to do surgery or go the more holistic route. I can’t speak for each individual’s journey, but both were the very best decisions for me and my body.
The holistic approaches I have taken have helped me get to a point where I feel like I am thriving again and have mitigated so many of my symptoms. The surgery helped to physically remove the endometrioma on my ovary as well as endo lesions on my bowels, bladder, diaphragm, and abdominal wall and to unstick my organs from each other. I had my ovaries, uterus, bowels, and bladder all stuck together. Definitely no fun and feels so much better now that they are unstuck!
Moving forward
I am by no means “finished” with my journey. Endo is something I will live with for the rest of my life. But what I can say is that at the time of writing this my last period was 100% pain free. In fact, I barely noticed it was happening. No PMS, no major mood or energy dips, no having to call off work or cancel plans. That for me feels like a miracle. I feel like I have my life back.
I am an Endo Warrior. If you are reading this and you have endo or suspect you might, you are a warrior too. If you have survived through even one day of intense endo pain you are a warrior. But we will thrive through this together. You are not alone. I am someone who is here for you and has your back through all the ups and downs. Your voice and your story deserve to be heard. As Brene Brown says, “You either walk inside your story and own it, or you stand outside your story and and hustle for your worthiness.”
My endo story is not something I used to talk about publicly or even with most of the people in my life. But I made a decision to change all that because I know how powerful sharing one’s story can be. I am not ashamed.
Much love to you, Endo Warrior. You’ve got this.
Looking for support on your own endo journey? Click here to learn more about Thrive With Endo, my 1:1 coaching program where I help women just like you to feel their best, and apply today!
References:
Duffy, James and Leonardi, Matthew. (2021). Ultrasound for diagnosing endometriosis: the latest evidence. Retrieved from: https://www.evidentlycochrane.net/ultrasound-for-diagnosing-endometriosis-the-latest-evidence/
Mayo Clinic. (2018). Endometriosis. Retrieved from: https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
Cirino, Erika. (2020). Is Lupron an Effective Treatment for Endometriosis and Endo-Related Infertility? Retrieved from: https://www.healthline.com/health/lupron-endometriosis
