Warrior Wednesday: Meagan Tourtillott

by | Apr 11, 2018 | Endometriosis, Endometriosis Awareness, Warrior Wednesday | 0 comments

My story starts out in a tone that I’m sure is going to be very familiar to those with endo. From a very early age I remember getting cramps during my cycle but never being too concerned about their severity because that was just “how things are” during that time of the month for girls. Sometime during my teens, I remember asking my mom if I could go on birth control as I had heard it helped with controlling cramps; but I think the thought of their teenage daughter on birth control must have weirded my parents out. Honestly, I don’t remember pressing the issue too much at the time because it made me feel weird that my parents felt weird and decided that I would just take my ibuprofen and deal with it.
But then fast forward to getting my first REAL job, you know one of those cool adult ones with a 401K and vacation time? Well that job also came with health insurance and one of the very first things I did when I got it was to go on The Pill at 19 years old. In the beginning years, The Pill was great – I still had cramps, but they were manageable, and life was good.

Until it wasn’t.

By the time I hit my mid-20s I had gone through a total life transformation. I began exercising and eating right and had lost a total of 140 lbs. I felt amazing and on top of the world until slowly but surely I began experiencing extreme mood swings. Don’t get me wrong, I’ve always had a propensity for the dramatics with an expressive personality, but this was different. The world was gray. I didn’t feel anything and it was like the color had been drained not only from my world but from my soul. In the very few and brief moments of clarity I had, I made the connection that the only time I felt “normal” was my sugar pill week. Once that realization hit me, then and there – I stopped taking The Pill, and things began to slowly get better.
Until they weren’t. Again.
I had been off The Pill and ok for about a year or two afterward, but during this time I began to feel fatigued. Fatigue in itself is such a tricky term to quantify or measure, much like pain. But after a weight loss of 140 lbs, I knew this fatigue wasn’t normal, this was seemingly coming from nowhere. Workouts used to leave me feeling rejuvenated and refreshed and I would welcome muscle soreness. Now I could barely get through a workout, if at all, and could hardly lift my legs some days they felt so heavy. I dealt with this for a while and was so concerned and perplexed over what this could all possibly mean, that I hadn’t noticed my periods began getting progressively worse.
Then, in February 2014 at the age of 26, I had my first “incident” as I like to call them. It was the first day of my cycle and my cramps were already bad as I was trying to get ready for work. This wasn’t too out of the ordinary, so I popped an ibuprofen and tried to ignore it. Big mistake, my body would not allow being ignored. What happened next would be what I imagine the uterus equivalent of a 3-year-old throwing a temper tantrum to be. It began with what I can only describe what it might feel like to have ice water poured from my head down through my entire body to my toes. Happening in tandem, my legs could not hold my weight, my skin went cold and clammy, the color was drained from my face, I was dizzy, I was nauseous, my heart was racing, and my breathing was shallow. All the while it felt like there was a bowling ball like pressure bearing down on my bowels and it felt like my uterus was folding in and around itself repeatedly. I seriously thought I was going to die and I begged and prayed that I would just pass out. Unfortunately, I didn’t and when it finally ended and my body reached equilibrium again, some 2 hours later, I was beyond terrified at what had just happened and immediately scheduled an appointment with my doctor.

Like so many others, this appointment was unhelpful. My doctor ordered an ultrasound of my pelvis and when nothing out of the ordinary showed up, told me it’s likely I “just have a low pain tolerance” and gave me a prescription for 800 mg tablets of ibuprofen. I felt humiliated. Even the results of my ultrasound seemed indifferent, “Unremarkable pelvic ultrasound.” I was crushed; the whole reason for my visit was due to the fact that my uterus felt anything BUT unremarkable!

This went on for 3 more years with the number of “incidents” not only increasing in number but severity as well. It was not uncommon for me to be found either in my bed or in the bathroom on these 1st cycle days. The blood tests my doctors ordered always came back in normal ranges and my unremarkable ultrasounds certainly weren’t helping matters. The sad thing is, I probably would have continued dealing in this way had these incidents been consistent. I could learn to deal with the pain, I could plan ahead to use my PTO on cycle days, but I could not deal with the erratic way my incidents would just happen. There was no rhyme or reason and I couldn’t plan for them, so I reluctantly decided to go back in to try again and plead my case that something was not right.

By this time, I had a new family doctor who FINALLY said, “You know, I wonder if you don’t have endometriosis?” I certainly hadn’t heard of it and wasn’t until I got home and scoured the internet that I thought she might be on to something. She ordered another ultrasound and this time, I had a cyst and what appeared to be blood in the pelvis, so a referral was sent for me to see an OB-GYN. Dr. April Sherren, my angel. With her, there was no messing around. She was suspicious immediately of my symptoms and my misshapen uterus and wanted to schedule me for a laparoscopy. Her conviction and certainty of what was ailing me were almost overwhelming to the point that I legit had an anxiety attack while she was explaining what a laparoscopy was and endo’s effects on the body. I even tried to start convincing myself that it was probably nothing! Looking back, I know I was scared that she wasn’t going to find anything, that my questions wouldn’t be answered, and that I would have to start from square one all over again. I even asked for pictures from my surgery, in part because I’m a science nerd that loves anatomy and physiology (and who wouldn’t want or need cool color real-time photos of their uterus?!), but mainly because I think I wanted to prove to myself that it was really there.

In June 2017 at the age of 30 years old, I was formally diagnosed with endometriosis and, most likely, adenomyosis through laparoscopic surgery. The endometriosis was found in one spot behind my uterus and was removed by ablation. Since learning more about my disease, joining the Minnesota Endo Warriors an the online support group of the Minnesota Endometriosis Nook on Facebook I’ve learned that the gold-standard for treatment is excision surgery (where the tissue is fully removed) and that may need surgery again. I am thankful to Dr. April, but will seek an excision specialist in the future to ensure the best outcome. Besides that spot, my doctor told me my insides looked great and a tubal dye test was done to test the flow of fluid through my fallopian tubes and showed my tubes were clear, so a natural pregnancy is still a real possibility for me. Since then I’ve been learning to navigate my new normal and what that means for me and I honestly didn’t take it well at first. I’m a tenacious perfectionist and this didn’t jive with me. I still have random days with pain and needed to learn that it was ok to take it easy on those days without feeling guilty. I’d overcome so much with my weight loss and realized I couldn’t just fix this and was angry because I hadn’t asked for this. But who does?

So the message I want to convey is not one of despair, but one of empowerment. There may not be an end game for endometriosis and it will be a process, but don’t give up, advocate! Advocate for yourself, for your health, for your friends, your family and don’t be silent! You are not weak, you are not whiners, and you are definitely not crazy. You, my pretties, are damn warriors – just like me.

— The Minnesota Endo Warriors are honored to help Meagan share her story and are committed to providing a place of community and comfort to those living with endometriosis and their loved ones. Meagan is proud to partner with the Minnesota Endo Warriors. If you would like to connect with her and continue to follow her story you can through her Facebook, Twitter and Instagram accounts.

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