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It Took Three Doctors and 14 Years of My Life to Receive an Official Endometriosis Diagnosis

It Took Three Doctors and 14 Years of My Life to Receive an Official Endometriosis Diagnosis


I was 16 the first time I felt the pain that eventually became a permanent part of my life.

I woke up at a girlfriend’s house, and though we had slept for about nine hours (ah, to be young and not have an internal alarm clock set for 5:30 a.m.), I felt like I had only taken a nap.

I was dehydrated, and my stomach and ovaries felt as though they were on fire. I knew I had started my period because I had bled through my shorts, and as I was realizing that, I experienced an encroaching cramp. I immediately headed towards the toilet. I vomited, cleaned myself up, and went home, thinking I had food poisoning or that I’d gotten a stomach bug.

Six months later, I’d gotten used to reenacting that exact routine on the first day of my cycle. I thought it was normal. Even though I had started my period at 13 and this was a fairly recent development, I thought: this was just what some bodies did. Right? Until I had yet another life-changing sleepover, that is.

There I was, bent over the toilet and vomiting bile.

As my stomach spasmed, my best friend Katie watched from the doorway and said, “Em. This is not normal.”

She was right. In reality, these symptoms are an indicator of a monster that 1 in 10 period-having people deal with every month, every day. But in the early aughts, when Paris Hilton was queen and Kim Kardashian was a closet organizer, the internet wasn’t what it is now. As a teenager, I was more likely to use Google to figure out what song was playing on the Ferris wheel when Ryan and Marissa on “The O.C.” kissed for the first time (“Paint the Silence by South,” if you’re wondering), than I was to find out what was happening to me.

I would bring it [the pain and terrible vomit-inducing period moments] up to my doctor during check-ups and she would literally shrug and just say: Some women have it worse than others. When I threw my back out at 18 (it was just before my period started) she gave me muscle relaxers instead of finding out why or how an 18-year-old non-athlete could have messed up her back that badly.

For 14 long years, I had the same violent symptoms nearly every month, to varying degrees.

I tried a new doctor every couple of years, only to be told the same things over and over again.

I tried to ease the pain with birth control until my sister was diagnosed with an aggressive form of breast cancer that was spurred on by high levels of estrogen, and I was no longer able to go that route. Then I turned to exercise, (which is supposed to make everything better, right?) I inevitably spent two months in crippling pain. I could barely get out of bed, much less run. I even changed my diet, until I caved and just decided to eat the damn burger. My self-control went out the window.

Then, when I got married, I received the most hurtful “prescription” of all: It will probably go away if you have a baby, so you should start trying. Never mind that we were too young for a child (we were barely stable enough to care for ourselves, much less an infant) or that my husband was in grad school and I was the only one who could work — I was being asked to bring another person into the world on the off chance that the process of creating them would fix whatever it was that was happening to me.

I didn’t even have a diagnosis, but sure, let’s bring more stress into my life by giving me a person to raise.

When I read about endometriosis for the first time, it was mentioned in a Facebook status posted by a woman I knew from high school. She was having a hysterectomy in her late 20s, even though she had no children of her own yet.

As I read her reasons for having it, everything clicked into place. She was vomiting, hurting weeks before and after her period, bleeding profusely, and passing large clots. As I started to research Endometriosis on my own, I could feel tears falling down my cheeks: I knew this is what I had.

But every article I read said it took seven to 10 years for a diagnosis, and the only way to know that I had it definitively was to have surgery. I was already discouraged and distrusting of doctors — how the hell was I going to get someone who took me seriously enough to do surgery?

In 2015, I had a period that was so painful and traumatic, that I was convinced I was having a miscarriage.

I was two weeks late, and I spent hours vomiting — so much so, that at one point it was nothing but blood from so much bile hitting my throat.

I was bleeding so much I thought I was hemorrhaging. But my health insurance, like so many others, was terrible. Instead of letting my husband call an ambulance, I got into the shower (once I finally stopped getting sick) and simply sat underneath the stream of hot water.

Once I felt as though I could stand, I got out and dried off. But within seconds, I had to rush back to the toilet. I passed … something. The blood made it impossible to tell. Was this a blood clot? A miscarriage?

I was then forced to go on about my day (as if everything was normal), which included co-hosting a baby shower.

A few months later I got sick at a club in Dallas, Texas. Shaking and cramping, my father-in-law made a joke that maybe I’d had a little too much sangria during dinner. But my three small glasses were well within my normal limit, and I had eaten plenty. I checked my period tracking app, and as another wave of pain, nausea, and cramps sent me running to the bathroom, I shoved my phone into my husband’s hands. A split second after I realized it, he did too: I was now getting sick while ovulating. These constant episodes made us demand answers.

I demanded to be seen by a specialist.

I soon found out I had cysts covering me inside and out. The first “specialist” I saw told my husband that he could laser off the cysts but said they’d probably come back. And as for the Endometriosis diagnosis? He doubted I had it. He figured the cysts were causing all of my problems, and that even though he saw “a lot of” scar tissue on my ultrasound, I had a chance that I could get pregnant, so we should probably do that.

He said this and talked about medical school all the while giving me my exam. He only spoke to my husband. At one point, while the doctor was scraping my cervix for tissue for various tests (not to mention completely ignoring my questions), the nurse looked down and mouthed “Sorry.”

You’ll forgive me for trying to ignore the problem for a while.

But one move across the country later, I found myself still writhing in pain. I wasn’t getting any younger, and it was time to figure out what was really happening. After I had another appointment with the specialist who recommended pregnancy two seconds after meeting my husband, I was referred to a doctor that specialized in endometriosis by my cousin’s wife.

I walked in, grim-faced and expecting the worst. Right off the bat, I said I wanted surgery, not a baby or a pill. Thankfully, the nurses took me seriously. They took their time with me. And then the doctor came in. He looked over his notes, asked me a few more questions, sighed, and said, “Well, you’re definitely a candidate for surgery. I want to do an ultrasound and an exam, but I’m going to have my scheduling department call you to set you up for laparoscopic surgery within the next couple of months.”

I cried like a little girl.

14 years and all that pain later, here was someone who believed me. Someone who gave a damn. He was comforting and knowledgeable. He went over everything with me several times before the surgery itself. And on the day of, he was the same way with my family.

He explained that I did indeed have Endometriosis. Stage III, in fact. It was so thick and obtrusive, that he thought it had been growing since I was a literal child. But he was able to get it all, and even though I was a “classic, textbook, fairly severe case,” he thought that with physical and nutritional therapy, it wouldn’t come back.

My story is, unfortunately, similar to a lot of other women’s stories. Excuses made by doctors and general feelings of hopelessness are peppered throughout, and I still feel as though I’m one of the lucky ones. My hope is that I’ll finally be able to get a few full weeks of my life back every month. I can be an advocate and it starts here.

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