For 2 Years, My Life Was a Medical Mystery. Then I Learned I Have One of the Most Misdiagnosed Diseases in Women (Exclusive)

03/28/2025 01:18 PM

PEOPLE staff writer Alex Ross, 24, shares her story of living with endometriosis to raise awareness and help other young women with the disease find the answers they need

Every day, I ask people to let me into the most personal parts of their lives. It's my job as a journalist at PEOPLE, and the responsibility that comes with storytelling is immense. So, when my gynecologist first sat me down last fall to tell me she suspected I had endometriosis, the next thing I did was read every single story on our website about women who have been brave enough to open up about their experience with the disease.

And then, I immediately wished we had more stories, especially from younger women. In honor of endometriosis awareness month in March, I figured I may as well answer my own call.

In January, a dear mentor of mine happened to tell me just days after I'd had surgery — unbeknownst to her — that the whole point of what we do is to get the story and get it right and (hopefully) help someone make their life better after reading it. I thought a lot about what she said as I decided to write this. She's right, of course. This story is about me, but it's not for me. It's for everybody after me.

Endometriosis. Sure, I'd heard of it. I'm very fortunate to be well educated, and I'm a journalist. We know a little bit about a lot of things. I'm also a hypochondriac who loves to catastrophize. Even still, having spent years asking Doctor Google (and my real doctors, in fairness) what was wrong with me, I never once thought it was endometriosis, and neither did they. Celiac disease? Appendicitis? Maybe. Pancreatic cancer? Colon cancer? God, I hoped not. IBS? Crohn's? Diverticulitis? Sure, I guess. Small intestinal bacterial overgrowth? 

Wait, what?

Ironically, none of those conditions or diseases or disorders are gynecological. I'm immensely grateful that the one I do actually have isn't life-threatening, like some of the others so devastatingly are. But an endometriosis diagnosis is life-altering, at least a little. 

Endometriosis is what they call it when the lining of your uterus also grows in a bunch of other places where it's not supposed to grow. It looks like tiny purple dots scattered around your pelvic cavity, though it can really show up anywhere internally. And, just like the lining inside your uterus, those tiny purple dots break down and bleed every month.

It's just as fun as it sounds, folks.

Related: Bindi Irwin Felt 'Desperately Alone' Before Endometriosis Diagnosis: 'Very Difficult Time' (Exclusive)

I've had terrible cramps since I got my first period when I was about 13. The cramps and the periods have always been painful, but like most women, I was taught that the pain is just a fact of life. I didn't have any other glaringly obvious problems, so I dealt with the horrible cramping that I assumed everybody else had, too — until I mentioned it, somewhat offhandedly, to my primary care doctor the summer before I went to college. She wasn't too concerned, started me on hormonal birth control and the cramps got better. That was the story for almost six years, until I started having gastrointestinal issues seemingly out of nowhere. 

For the better part of a year, I spent almost every morning at work sick to my stomach. The nausea was debilitating, but I would chew some gum (a trick of the trade) and try to take my mind off my roiling stomach. Doing work you love is good for that, and so is the support and watchful eyes of four friends just desks away.

The nausea almost always passed by lunch time. The only problem with eating, however, was that it exacerbated the bloating I was dealing with, too. In retrospect, the bloating should've clued me in to endometriosis a lot sooner than it did (which was never). As test after test came back negative, I thought it must be a food allergy. I thought maybe I had poor gut health and in turn couldn't digest my food correctly. I was running out of ideas, and the doctors were running out of tests. Again, in hindsight, it all seems quite clear. There is no test for endometriosis. They couldn't give me something they didn't have. 

Meanwhile, in addition to all of my GI problems, I'd started having other simultaneous gynecological issues. My cramps had steadily returned with a vengeance despite the hormonal birth control, and I was constantly, chronically uncomfortable. My gynecologist and I both threw our hands into the air. Me, because I was ready to give up. Her, because, well, now she was pretty sure she had a diagnosis. Turns out, I had a majority of the most common hallmarks for endometriosis (cramps, chronic gastrointestinal distress, what we'll lump together as otherwise unexplained gynecological discomfort — you get the picture). 

When my gynecologist sat me down in September to tell me she suspected I had endometriosis, I had two thoughts. Really, just two. The first was a sense of relief that she hadn't said I had something, again, life-threatening. The second thought I had was Oh, [insert expletive]. What does that mean for my fertility? 

My gynecologist started throwing out words like "surgery" and "pregnancy" and "hysterectomy" and the room did spin, just a bit. I did like one rotation on the crazy catastrophe carousel. 

But then I got off, and I actually started listening to what she was saying. One in 10 women have endometriosis (hi, that's me!) and it takes an average of 10 years to get a proper diagnosis. According to the Endometriosis Foundation of America, the lack of knowledge about the condition both in the general public and within the medical community really holds us all back. A lot of the efforts are actually just aimed at raising awareness (if you're still here with me, now you know a lot more, too. See how that works?) 

Related: The Bachelor Contestant Lexi Young Opens Up About Endometriosis Diagnosis: 'My Pain Was Validated'

My gynecologist showed me on her computer what endometriosis actually looks like inside a pelvis. I'm squeamish, but I was fascinated. It helped to finally see what was going on inside me.

"That's what's responsible for all of this pain?" I asked her, incredulous that tiny little purple pinpricks of tissue where they weren't supposed to be were what made me feel so awful all of the time. 

She concurred, and she even informed me that, ironically, most women with endometriosis see their symptoms improve during pregnancy (this is due to an increase in the hormone progesterone, but there is no cure for the disease). And, while doctors don't know what causes endometriosis, they do believe there's a genetic component. Girls with a close female relative with the condition are three to seven times more likely to have it themselves, according to the Endometriosis Foundation. While there's no documented evidence of endometriosis in my family, it's a hugely under-diagnosed (and misdiagnosed) condition to begin with, so who really knows?

I was also heartened by the fact that these truths all pointed towards me still being able to have children despite the fact that endometriosis is one of the top three causes of female infertility. God-willing all goes well, once I start having kids, doctor's orders dictate that I'm supposed to have them all in fairly rapid succession and then, when I'm sure I'm finished, have a hysterectomy. That's … a lot to wrap my head around at 24, but I guess we'll cross that bridge (or bassinet) when we come to it. In all honesty, this is the part I think about (read: worry over) the most.

I decided within a week of the conversation with my gynecologist that I'd go ahead and opt for surgery in January. A laparoscopy is the only official way to diagnose endometriosis anyway, and, assuming they find it inside you, they cut it out! I wanted a definitive answer, I wanted those purple dots gone, and I just wanted to feel better. 

The thing is, despite this laparoscopic surgery being consistently advertised as "minimally invasive" (because compared to the menu of surgeries performed on any given day, it is) it feels far more invasive as the person whose abdomen and pelvis are being rooted around with robotic arms and tools and cameras for hours. After the fact, you can hardly move on your own. It's the definition of glamour (not), and it's incredibly humbling. It also wasn't nearly as bad as I had been expecting. 

I think that's one of the things I wanted to stress most with this essay — every TikTok video and reddit thread I scoured in the lead-up seemed only to have horror stories about the recovery process. It was made scarier by the fact that your doctor can't really tell you how long the recovery process will take, or what it will be like, because they don't know what they're going to find inside you until the moment they get in there. But, as an otherwise healthy 24-year-old, recovery proved to be just fine. I wasn't in pain so much as I was just exhausted and wholly sore.

My friends mailed me flowers and cookies and books and letters. My brother watched movies with me and made sure I always had plenty of ginger ale to drink and soup to eat. My mom took me to the hospital and waited there for me so that she was one of the first faces I'd see in recovery after surgery (which took about three and a half hours). She physically helped me in and out of bed for days, and she made sure I took my cocktail of extra-strength Tylenol and Motrin when I was supposed to. I was back to work (remotely, and admittedly from my bed) within five days, and I went back to work in person after two weeks.

Related: Olivia Culpo Reveals Endometriosis Diagnosis, Urges Others with Symptoms to 'Take It Seriously'

My boss, who will likely hate this public shout out, kept me laughing and entertained the entire time via text since we live on opposite coasts. Early on, she'd started referring to the whole ordeal as the state of my "innards" because we're two very professional women with large vocabularies and, really, what else were we going to call it? I had no choice but to be vulnerable, and she met me there with good humor and figurative pompoms that she's yet to put down. She lifted me (and this story) up, and she makes me feel important and smart and valued and capable. I read somewhere while I was in the process of writing this that great leaders don't create followers, they inspire other great leaders. It made me think of us.

It's been almost three months now, and save for the two little tiny scars on either side of my abdomen, I forget most days that I even had surgery. I'm back on hormonal birth control as a sort of therapy because that's supposed to help slow the growth of the errant tissue, and I'm admittedly still adjusting. I have a six month follow-up scheduled for June because the truth is that having a chronic condition is hard sometimes, but the old "knowledge is power" adage rings particularly true. I'm glad I was diagnosed now versus 10 years down the line when I'm trying to start a family. I'm glad I have answers and smart doctors and access to the medical treatment I need.

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I'm also glad to have learned that I can do things that scare me (including writing this!) The laparoscopic surgery confirmed that I have endometriosis, but I've confirmed something else all on my own: endometriosis doesn't have me, and what's more, now People.com has one more story from one more woman to prove just that.