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Unsung Hero: An Endo Story

Unsung Hero: An Endo Story

For confidentiality reasons, the author has wished to remain anonymous.

My heavy eyelids opened up slowly. With blurred vision, I could make out the drugs trickling down from the IV bags, drip...drip...drip. It felt crazy peaceful, like the first rain after months of drought. I chuckled at the oxymoron: crazy peaceful. I drifted back asleep. 

When I woke up, it took a moment for my eyes to adjust to the bright light. “Everything went beautifully, I’m really happy with the outcome,” the surgeon said. My heart felt heavy but my body felt relieved. I took a shallow breath. I wanted to ask questions but the words wouldn’t come out. My throat hurt. My mouth felt dry. What did he mean by beautifully? Was he able to save my ovaries? I was exhausted but I mustered enough energy for one, “Will I have kids?” 

The surgeon didn’t need to answer. His face told me everything. But he sat down, held my hand, and said, “We will do our best.” So many thoughts flooded my brain. What if your best isn’t good enough? What if you aren’t the best? The drugs were too strong. I blacked out. 

I could hear someone by my bedside. My mom said “Hi Beti.” I felt so hazy and said “Hello.” She knew I was her scared little girl. Without prompting, she calmly and slowly said, “Everything will be fine and you will have children.” When my vision stabilized I could see the strength in her face. I became frustrated. How can everyone be so positive right now? Why wasn’t anyone telling me what I already knew? My odds of having biological children were slim to none. I knew it, my parents knew it, and so did the doctors. I saw the beats per minute on the heart rate monitor elevate. A nurse came by and administered more I.V. medications. I passed out. 

I felt someone touching my legs. I woke up and the room looked different. I had been moved from recovery into a new room in the hospital. My dad was at the foot of my bed. He smiled and said, “You did good kiddo.” I chuckled and jokingly asked, “Did I pass the test?” For every minority-raised child, passing tests is your only job when you are young. He responded, “With flying colors.” I laughed and fell asleep. 

I could hear my parents talking about my recent endometriosis diagnosis. They were discussing the next steps. It all sounded very clinical. How could I expect any less? They were both doctors and they thought I was asleep. They didn’t say this exactly but I processed their words as a 22-year-old patient presents with multiple endometriomas on ovaries, the bladder, and intestines. Laparotomy performed to excise masses. Egg reserves low. 

I had never heard them speak in such a defeated tone. Their words were a mix of sympathetic and concerned but also weak and lost. I kept my eyes shut as a single tear rolled down the left side of my face. My heart broke and I didn’t want to wake up. So I forced myself to fall asleep. 

I looked around the hospital room. My mom had filled with what looked like every item from the hospital gift shop. It was beautiful but also the aroma of the flowers was overwhelming. If her daughter had to go through this, she was going to make me go through this with style and grace. I’m eternally grateful with how she showed her support. It was the greatest display of affection, which was lost on me at the time. 

I had just finished undergraduate school in May. Less than 3 weeks after that highest of highs, I experienced the lowest of lows: my endometriosis diagnosis. I was sitting in the surgeon’s office with my dad when we received the news. Their words sounded like trumpet noises, like the adults do in Muppet Babies or Charlie Brown. My dad and the surgeon were staring at me blankly. I think they asked if I had questions. I was in shock; I asked how this was going to affect my new job that started next month? THAT—horrifyingly—was my first thought? 

Throughout my entire journey living with endometriosis, I’ve done many non-traditional things. But they are all methods that made me feel in control. This entire diagnosis has made me feel so out of control, that if I can control something, I will. I used geranium oils for fertility wellness. I’ve prayed to Ganesh to remove my obstacles. I lit candles to Virgin Mary wishing for a conception. I carried a gris gris bag to bring about my desires for kids. I ate pineapple core to make my uterus more hospitable. I ate an avocado a day for healthy fats. I put my legs above my head for hours post copulation. Nothing seemed to work. 

When I didn’t get pregnant, I added more to the list. Because, the next time, I would get pregnant and it was merely because of everything on that list. Looking back, I know that all of these trivial acts could not negate my medical condition. But my brain and heart wouldn’t allow me to give up. My list was my support. I couldn’t fail. Having children is all I ever wanted when I was younger. I never dreamed of the wedding, for some reason, all I can remember was dreaming of the baby. 

Life is a rollercoaster. Yes, but that makes it feel like it’s a fun or scary ride with drops and loop-de-loops. Fertility issues are the worst type of roller coaster. Every turn can make you go even lower, to the point where you’ve lost yourself and those around you. You feel like you are isolated and you lose the ability to fight. You are so used to going down, that you are exhausted. At some points you want to get off the ride because staying on it leads you into dark spaces. 

Try this: take a moment away and forget about all the doctor’s visits, support groups, surgeries, ultrasounds, needles, and just breath. I realize that’s easier said than done. I didn’t want to hear that when I was in the thick of it. So do what you need to do. This too shall pass.

To my parents and husband: thank you for all the support through my journey. I’m sure I said some unkind words to you over the years. I’m so sorry. You are the reason I am who I am today. For that, I am eternally grateful. 


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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.