Endometriosis Awareness: Part Two - My #Endo Story
Welcome back, friends! Today is part two of the Endometriosis Awareness series and in this episode, I’m sharing my story with Endometriosis.
I want to mention in the beginning of this episode that this is my story and how Endometriosis has affected my life and the things that have been helpful for me, so while some of these things may also be true for you, and may even be helpful for you, make sure you are working with a physician and other health professionals that can help you implement any changes you want to make or treatment methods you’d like to try.
So here is my story:
I was diagnosed with Endometriosis in 2014 after an exploratory laparoscopy - I had just turned 26. Although I had been having symptoms of hormonal imbalance and even a PCOS diagnosis a few years before, I hadn’t even really known anything about Endometriosis. I didn’t have chronic pain and at that time I would say I really had no symptoms at all (once I learned more about it I realized that I had been having symptoms just not the bad cramping or heavy periods that were so often thought to accompany Endo).
The summer before my first surgery I experienced my first severe pain episode. I don’t remember a lot about it but I do remember yelling for my husband from the bathroom because I had never felt pain that intensely before and I had no idea what was happening. After an hour or so it finally eased off and I went right back to my normal life without missing a beat.
The next time it happened was probably several months later but that time, the pain was unbearable. It came on suddenly again and I can distinctly remember rolling around my bed in pain. Again, I had no idea what was happening but thankfully I had a good friend who was a nurse and suggested that maybe it was a cyst rupturing and I needed to see my Dr. That time the intense pain lasted for an hour or two, but I couldn’t stand up straight afterward without having sharp pains in my lower abdomen. I went in for an ultrasound the next day and I remember being scared out of my mind! Was it a tumor? Ectopic pregnancy? Was it going to happen again?
I remember crying during the ultrasound and the tech trying to calm me down but seeming very concerned herself. The ultrasound didn’t reveal much other than that there was a large cyst on my ovary and that I likely needed surgery to see what was going on.
So as I already mentioned, I had that surgery a few weeks later which revealed that I had Stage 4 -Endometriosis, with lots of adhesions and several of my reproductive organs stuck together. My doctor told my parents that it was so severe that there was basically zero chance of conceiving if I hadn’t had the surgery. I actually remember being relieved in my very foggy post-op state that it was Endometriosis because I was terrified that it was a tumor. And while I’m so thankful it wasn’t cancer, I had no idea the weight of a Endometriosis diagnosis.
I recovered pretty quickly from that surgery and the next several months following that are really fuzzy to me. I don’t think my surgeon / OB really explained much to me other than if we wanted to get pregnant, we needed to start trying as soon as I was healed from surgery.
I ended up changing physicians during that time because of a friend’s recommendation that this doctor was experienced with Endometriosis management. At my first visit with her, she ran a few lab tests, including the antibody marker CA-125 which can sometimes show endometriosis in the body. I was so surprised when she called me a week later to say that my levels were already high again and that she was going to refer me to a Reproductive Endocrinologist. I was so frustrated because it hadn’t even been a year since my surgery and it was already back.
One of the blessings of my Endo story is that I didn’t have the chronic pain that I know so many women experience, but in this case, it was also a curse because I had very little ability to monitor what was going on inside my body.
After seeing my new RE, I had my second surgery in July 2015. This one was way harder for me. I was under anesthesia a lot longer (which is a whole other story in itself) and even though it hadn’t even been a year, I already had a lot of adhesions and endometrial tissue growing again, and my organs were getting stuck to each other again. Recovery was more difficult physically, because of the invasiveness of the procedure in order to get it all, as well as some allergic reactions and other complications I developed. In addition to that, this surgery was harder on me mentally as well.
I distinctly remember the feeling that my body was betraying me - that it was doing all these things and I had absolutely zero control over it. I didn’t know why it was happening or what was causing it and I felt like there was nothing I could do to fix it. As a type A, fix-it, kind of girl this was very, very hard for me. I felt like I was doing all the things - I was trying to eat healthily, I was getting chiropractic adjustments, I was exercising, I was following my doctor’s recommendations - and yet this disease was still growing in my body. If it were not for my faith, my relationship with Jesus and the comfort and peace he allowed me to have, and the encouragement and support of my husband, my friends, and family - I don’t know how I would have gotten through that time. Just as a side note, that is my number one piece of advice for someone with Endometriosis (or any chronic illness, really) don’t try to do this alone. It’s so much harder that way. That is one of the number one tools of satan - the enemy of our souls - to make us feel isolated, especially as women. To make us doubt God’s goodness, to make us think that no one could possibly understand or that no one really cares - and none of those things are true! So I just want to encourage you, fight back against that. Don’t isolate - find someone to talk to. Let people in, tell your friends, talk to your family about it, see a counselor. Endometriosis is a physical condition but just like so many other things in this life, it also wreaks havoc on your mind and your emotions.
Following that surgery, we immediately started trying to conceive and I was regularly seeing my Reproductive Endocrinologist for that. We tried IUI and a few other of the conventional medicine options but unfortunately, were still not able to conceive.
It was really at this time that my desire to really dive into more of an integrative/alternative medicine approach increased and I started researching as much as I could. I changed my diet, read books and articles constantly, took all kinds of different supplements, but I was just kind of lost in it all. I really needed someone to guide me and help me figure out what my body really needed.
I had a friend of a friend that had a very similar story to mine and she had gone to see an herbalist in North Carolina and had drastic improvements and was even able to get pregnant and it just kept popping into my head that maybe this was something to try. To be honest, I had a lot of reservations about it. I definitely had zero understanding of what an herbalist did or how they were trained and I was extremely skeptical, but at this point, I figured it couldn’t hurt anything. So in the fall of 2016, I made an appointment and drove the two hours to see her. Honestly, the whole experience was so crazy and I will maybe have to do an entire episode about that experience because it’s way too much info for this episode, but to sum it up I’ll just say that I was totally caught off guard. This sweet lady starting explaining things to me about how the body worked that I had never heard before - and they made sense. Before even reading my medical history she was telling me that I had stagnation in my reproductive organs and all kinds of digestive issues that were driving a lot of my hormonal imbalances and inflammation - just by looking at my eyes and doing some muscle testing. She told me that I had an overgrowth of Candida in my gut and I needed to make changes to my diet and prescribed several different herbs and vitamins that I needed to take for the next 3-6 months. I’ve never experienced anything like it but I took her word for it and followed her recommendations.
During this time I had also heard a lot of good things about acupuncture and how it could be beneficial for Endometriosis as well as aid in fertility. So around December of that year, I also started seeing a reproductive acupuncturist (spoiler: more on that soon!).
I noticed a lot of my GI symptoms started to improve and I felt less stressed about everything. I realize now that it was a combination of the supplements, acupuncture, and really being able to release the control and fear over to God. And in February 2017, 4 months after seeing the herbalist and following her protocol and after two cycles of acupuncture, I found out I was pregnant (on valentine’s day)! Shocked is a major understatement for sure! I was able to have a healthy pregnancy with zero complications and delivered a very healthy baby girl.
I can’t tell you what exactly it was that made the difference for me - was it the herbs? The acupuncture? Divine healing? I honestly don’t think it was any one thing. I think that it all worked together! I think the surgery removed the adhesions and put things back in their proper place, the combination of the herbs and the diet helped to heal my gut and some inflammation, I think acupuncture helped my body relax and also helped with the hormone imbalance and inflammation. I know that God was in control of the whole thing - from start to finish. He has blessed us with science and medicine, and holistic healing modalities like acupuncture and plants/herbs and I think the whole time he was working on my heart to learn to trust Him.
As far as where I am today with my Endometriosis story - the honest answer is that I don’t fully know. I had labs done again about a year ago and my hormone levels were good and my CA-125 levels were still low, which I’m so happy about but that isn’t 100% reliable. I still follow an anti-inflammatory diet and try to really preserve my gut health which I am sure is helping, but being someone that doesn’t have extreme symptoms from Endo, I can’t gage 100%. I plan to continue with this lifestyle and monitor my labs and go from there! We do hope to have more children, so I’m sure that will reveal more about how things are functioning for me.
I hope that my story has just given you a little insight into the life of someone with endometriosis - and really, I’m one of the luckier ones. I’ve for sure had my fair share of difficulties with it, but not to the degree that a lot of women suffer. So many women live in chronic daily pain and have unbearable pain and horrible symptoms and debilitating anxiety every month. Many women have to miss work and school regularly because of their symptoms. It is a major financial burden and takes a huge emotional toll. If they are also trying to conceive, even more so. If you are someone with endometriosis, I hope my story has just given you a little hope to know that you aren’t alone, you aren’t crazy for feeling the way that you do, and that there are options out there to try that may help you. No one’s story is exactly the same but there is something for us to learn from each of our stories and I appreciate you taking the time to listen to mine.
If you’d like to do your own research and maybe try some of these things I’ve mentioned for yourself, here are a few helpful links and resources:
Integrative Women's Health Institute: https://integrativewomenshealthinstitute.com/?s=Endometriosis+
Dr. Jolene Brighten: https://drbrighten.com/causes-endometriosis-5-natural-treatment-strategies/
Natural Fertility Info: https://natural-fertility-info.com/?s=Endometriosis+
Acupuncture for Endometriosis Relief: https://www.healthcmi.com/Acupuncture-Continuing-Education-News/1770-acupuncture-beats-drug-for-endometriosis-relief
Tennessee Center for Reproductive Acupuncture: https://www.tennesseereproductiveacupuncture.com/phone/index.html
Sunshine Herbs and Vitamins Clinic in Asheville, NC: http://sunshineherbsandvitamins.com/practice.html
If you know someone who has endometriosis, share this episode with them! It was always helpful for me to read other people’s stories so I know it will be helpful for them too!