✨ 1 in 10 ✨

the start of living with endometriosis // aka the first of my endo entries

I’m competitive. I’d be lying if I said I wasn’t, and part of me feels like it’s because I’m the youngest of my siblings. I always had to compete with something they were doing to get attention. So when I learned at the beginning of September that I was 1 in 10, I did celebrate a little bit. But I also was overcome with a profound sadness and feeling of hopelessness. Because my prize wasn’t a trophy, a medal, my mom’s attention, or a pizza party. My prize was a diagnosis of endometriosis. A condition that will affect me for the rest of my life, and that has anonymously affected me for the last 28 years.

Endometriosis is, at its core, a condition of shit growing where it shouldn’t in the human body. Tissue that’s supposed to only be in the uterine lining shows up elsewhere, makes itself at home, and wreaks havoc to anything near it. Sometimes it goes undetected; so many folks don’t know they have it because it doesn’t impact their life at all. And sometimes it’s so debilitating it lands you in the hospital.

I clearly am not in the first camp. My endometriosis had me in the ER and out of work twice over the last year. The first time I had no clue what was going on. I knew I had pain, bad pain, and had some horrific stomach virus that had me sicker than I had ever been in my life. My husband made me go to the ER on the fourth day I couldn’t keep Pepto or water down, and we learned that I had an ovarian cyst rupture. I was in pain and had terrible GI symptoms because I had internal bleeding. And because I was experiencing an endometriosis flare up, though they didn’t put that label on it.

At the time I was given anti-nausea pills, an IV, and told to rest for the remainder of the week for everything to calm down. I was told to follow up with my gyno in a few days to make sure all was well. I wasn’t to do anything strenuous, like walking up and down a bunch of stairs, climbing a ladder, or lifting something more than five pounds. I was basically on bed rest since I couldn’t leave my third-floor apartment or do my very physical job. I did what any rational person would do and spent the three days between my ER visit and follow up appointment trying to understand what the hell happened and why the hell it happened.

I had had cysts before, but none that had ever ruptured and caused a significant amount of pain. I was diagnosed with Polycystic Ovary Syndrome (PCOS) in 2020 after a three-month long investigation to figure out why Lexapro was causing constant vaginal bleeding when I had the Nexplanon birth control implant. I was told this nonstop bleeding is a side effect that only happens if you have PCOS. Not wanting to go against my doctors, or question them too much, I had my first transvaginal ultrasound and a CT scan to confirm cysts. I swapped the arm implant for an IUD and the Lexapro for Zoloft and went on with my life.

Fast forward five years to the ER visit that changed it all. While it’d been a long time since I’d dealt with cysts, I at least wasn’t a stranger to them. Fibroids, however, were a new term to me and one that was on my discharge paperwork but not mentioned at all by my ER doctors. In Googling, I absolutely freaked myself out, especially when the C word came up alongside it. To think that I could potentially have cancer at 27 felt like I was zooming in on an image at the end of a really dark tunnel. My vision blurred around the word and I grew more anxious. And then I saw the term endometriosis in the WebMD article.

While certainly less grave, the only person I knew who had endometriosis was my grandmother. (Technically, my step grandmother.) I knew that she had painful periods that were so severe she hemorrhaged. That the first time she hemorrhaged at fourteen she thought her liver was falling out. That she was never able to have a child of her own because of said endometriosis. And while I’d been dealing with painful, irregular, heavy periods since I was 11, it was the last bit that scared me the most.

This whole process of learning I have endometriosis started just over a year ago. I wanted to see how much time I have left, biologically, to have children. If I can have children. Because at some point early in my life, I was told I couldn’t and that thought had stuck with me. I accepted that I wasn’t going to be a mother. And I was content with that, because I didn’t want to be. I didn’t want to continue the cycle of abuse and manipulation that I had experienced. But then, when I met my now husband, my tune began to change. Because I had finally met the person with whom I could parent and see a larger life with. It therefore felt particularly brutal to learn the same OBGYN who bullied me into a pregnancy test at 14 and caused me to break down by saying I was lying about being a virgin if I wasn’t getting my periods was potentially telling the truth about my inability to carry a child. There was something in me that didn’t want to believe it, and I needed to have more information.

I had fertility testing done in October, which was inconclusive. Meaning my fertility levels were low but it was hard to tell if that’s how the cookie crumbled or a result of my IUD. I was told to get a more accurate picture, I needed to be off birth control for three months. My IUD had to be replaced this year anyway, so I figured it was perfect timing. I had my IUD removed in January with a plan to repeat the fertility testing in April. And two weeks later I had my first bout in the ER with pelvic pain (see above).

The second time I went to the ER for what I thought was a cyst rupture was much calmer. I had had a sharp, stabbing pain that woke me up at 1am and that persisted the rest of that day. The next morning, I woke up, put on soft clothes, packed a bag with my Switch and Kindle, and waited for my husband to wake up to drive me to the Home Depot Emergency Room in Brooklyn. I was in significant pain and cried when the women at the front desk asked me what was going on. I responded that I thought I had a cyst rupture, that I had this happen back in February and was experiencing the same symptoms, and that I didn’t want to just suffer the way I had before. I was brought in, given a bed, and made very comfortable by the nurse, PA, and attending. I was given morphine, had multiple ultrasounds, blood work, and a CT scan. And everything came back clear. There were no cysts, no evidence of a rupture. Except it was also clear that I was in incredible pain, that when the PA pressed on my abdomen my pain level skyrocketed to an 8/10, even with pain killers. And it was clear to them that I was having an endometriosis flare up, that I needed to get into a specialist ASAP, and that my pain was real.

How validating that ER visit was. To have pain so significant that I was prescribed morphine because the most aggressive NSAIDs didn’t do shit. To be taken seriously and to have been listened to about my pain. To finally be on the path to getting answers. I was able to get an appointment with one of the top endometriosis doctors in the world two weeks later who confirmed within ten minutes of listening to my symptoms and completing a physical exam that I have endometriosis.

One month later, I had a hysteroscopy, laparoscopy, cystectomy, and appendectomy to remove the endometriosis that was in my abdomen.

I had read about another woman’s journey with endometriosis in February when the word popped up for the first time. A book titled Ask Me About My Uterus by Abby Norman. It was informative and led me to look at my symptoms in a new light. In the same way, I’m hoping this Substack series can do the same. That my candid explanations of what I’ve gone through, how I got there, and how I’m living with and managing my endometriosis can lead other women and people with uteruses to seek care, help, and relief that is so desperately needed from the condition.

I’m aiming to be thoroughly vulnerable, honest, and transparent in these accounts. There will be some kinda gross things I talk about and some that are potentially triggering. I’ll do my best to note these at the top of each entry, but I hope you’ll follow through and read these parts regardless. Because there’s really no way to proceed without confronting the pieces that make us turn away, and the parts that made me shudder are the same ones that made the disease become so much clearer.

I’m also stating here and now that this is my experience. I am by no means a medical professional, and while I will be recounting what my care team has given me, that doesn’t mean it’ll work for everyone or even anyone. Each case of endometriosis is different, and that’s a huge part of why it’s challenging to diagnose and care for. I hope that this will act as a guide more than anything, along with solace that there is hope, community, and care if you look for it in the right places.

Until next time.

🌎 E