Part 2: Endo What? My Diagnosis story continued...
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Time to read 5 min
After surviving the whirlwind of my emergency room visit, I hauled myself back home for some well-deserved rest. Once I felt like a functioning human again, I made an appointment with the superhero doctor who had helped me navigate my ovarian cyst debacle. I remember strutting into her office, feeling like a balloon filled with hope, absolutely convinced she was the answer to my prayers. I just knew things were about to change for the better.
When I walked into her office, I was set on getting an IUD. After years of trying every kind of birth control imaginable, I was over the pills and their endless side effects. The idea of a low-dose IUD felt like I was finally catching a break. But my doctor wanted to try a few more methods first. She assured me that if this plan didn’t work, we’d move to the IUD I was hoping for. It wasn’t the path I wanted, but for the first time, I felt like someone was in this with me.
After a year of trying different birth control methods and having the same unsuccessful result, we decided it was time to try the IUD. I strolled into the doctor's office on the big day, practically giddy with excitement at the prospect of no longer taking a pill every freaking day. Honestly, it was the first time I had ever been excited about trying a new birth control method. Can you blame me? When you've been popping birth control pills since the age of 13, the idea of freedom from that daily routine is enough to make you want to dance.
I let out a scream so shrill, I'm sure they heard it in the next county
Finally, the moment had come. I was lying on a cold table, legs spread open, staring at the ceiling, trying to distract myself from the reality of what was about to happen. Then I saw it—the needle. It wasn’t just any needle; it was huge, the kind of thing nightmares are made of. My heart started racing as the doctor prepped it. "I thought to myself there's no way thats going inside of me." She assured me that it looked much more terrifying than it was and that I should only feel a small pinch. Althought she was kind, her attempt at good bedside manner did not ease my anxiety.When the needle pierced my skin, the pain was sharp and immediate, radiating through me like a lightning bolt. It felt like fire spreading inside me, and I instinctively gripped the edge of the table, my knuckles turning white. I then let out a scream so shrill, I'm sure they heard it in the next county.
Then came the IUD insertion. Even with the numbing, the pain was indescribable. The first attempt sent another scream ripping out of me, this one even louder than before. It wasn’t just physical pain; it was an assault on every nerve in my body. The doctor paused, injected more numbing medication, and tried again. The second attempt was just as bad, and by the third, I felt like my body was fighting back against everything happening to it. She stopped and explained that she couldn’t numb me any further. My pain levels weren’t normal, and she recommended seeing a specialist who could perform the procedure under anesthesia. For a moment, her words caught me off guard. After years of being dismissed by doctors who insisted my pain was “just bad cramps,” hearing her acknowledge how extreme it was felt like the validation I didn’t know I needed. Someone finally believed me. Her referral wasn’t just a next step; it was a lifeline.
Endo What?
The specialist was an OBGYN with over 25 years of experience, and he immediately put me at ease. He asked me a series of questions about my symptoms, and after listening to my answers, he told me that he thought I had endometriosis. Endo- What? I must have looked like a deer in headlights because I had no idea what he was talking about and had never heard of the condition before. He explained to me what endometriosis was, and I felt like I had entered a new level of hell. But, I was relieved to finally have a potential diagnosis, and a few weeks later I was scheduled for exploratory surgery.
I walked into the surgery center feeling like a contestant on "Fear Factor." Nervous as hell, with my heart racing faster than a Greyhound on a racetrack. Part of me was excited to finally get some answers, but the other part was hoping the doctor could wave a magic wand and make it all go away. After the surgery, the doctor informed me that I had stage 4 endometriosis. I thought to myself, "Oh great, I have a condition that I officially need to learn how to pronounce”.
During surgery the doctor was able to remove some of the endometriosis and even threw in an IUD insertion during the surgery. The idea of not having to remember to take a pill every day seemed like a small win in my book.
My doctor had mentioned that recovery would be easy and should only take a week or two. The first week post-surgery was like being in a boxing ring, and let's just say, I lost. It hurt to do anything and everything. Laughing, sneezing, coughing, farting...you name it. It felt like someone had electrocuted my insides then tried to pull them out so that they could stomp on them. If you think that's graphic, imagine living through it. It took me about 6 weeks to start feeling ok-ish enough to function like a human being running on empty. After I recovered from my first surgery, it felt like I had struck gold. For the first time since I was 11, I felt alive—like really alive. My life felt like one of those rom-com montages where the protagonist falls in love and suddenly everything changes. Colors seemed richer, my step had a little bounce to it, food tasted better, and I felt as if I was walking on air.
A few months later, the pain came back, and not in a me duele un poquito kind of way—It was like my uterus was staging a full-blown protesta. I was fainting at work and school, struggling just to get through the day. Reaching out to my surgeon felt like my last lifeline, but then I got hit with the worst news: my insurance no longer covered him. Just what I needed, right? Trying to find another OBGYN who understood endometriosis felt like hunting for the best tacos in a new city-hopeful at first followed by disappointment. I was stuck in what felt like an endless loop, chasing after the ever-elusive holy grail of endo treatment.
Feeling defeated yet again, I found myself back at square one. But this time, I had a diagnosis—a name for the thing that had been wreaking havoc on my life. I thought that would be my compass, pointing me toward answers and relief. What I didn’t know then was just how brutal and unforgiving navigating this condition would be.
Crystal Elizabeth
Crystal Elizabeth is a Latina endometriosis lifestyle expert with over 20 years of experience navigating the challenges of endometriosis and adenomyosis. With nearly a decade of remote work and digital nomad experience, she has mastered blending the demands of chronic illness with the thrill of exploring new places. Crystal is known for uncovering endo-friendly cuisines, adapting recipes to minimize triggers, and seeking out accommodations that balance comfort and accessibility. Her goal is to inspire others to embrace a life of exploration while effectively managing their health.