I started experiencing symptoms of endometriosis when I was just 12 years old. And after 15 years of being ignored, I was finally diagnosed last year, at 27.
My name is Emily Rogers. I live in West Virginia, and I am living with stage 4 endometriosis.
Endometriosis is a chronic condition where a tissue similar to the inner lining of the uterus grows outside the uterus. And it acts in a similar way: it thickens, breaks down and bleeds. However, unlike the lining inside the uterus, endometriosis cannot leave the body.
For me, endometriosis has been extremely debilitating. My symptoms have included extreme bloating known as endo belly, extremely painful periods, pelvic pain, abdominal pain, lower back pain, pain between periods, pain during ovulation, heavy periods, pain when going to the bathroom, fatigue, nausea, and chest pain. These symptoms have progressively gotten worse through the years.
Throughout my teenage years, I complained of these very symptoms to doctor after doctor, but I was told the same things that too many women hear: ‘It’s all in your head, everything’s normal, it’s anxiety, are you sure you’re not pregnant?’ Over and over again.
Every time I went to the doctor, emergency room, or hospital, I would have to prove I wasn’t pregnant by taking a test. They never listened. One of the first things doctors will jump to is, ‘well you must be pregnant.’
I’ve been to the hospital more times than I can count—if I had to guess, I would say probably 100 times through the years. By the time I was diagnosed, I was stage 4. It was everywhere.
My first symptoms, at just 12 years old, were very painful periods and heavy bleeding. But for my entire life, I had heard ‘periods are supposed to be painful.’
I thought this was exactly what everyone else went through, I thought this was normal. I remember bringing up these exact symptoms to a gynecologist as a young teenager, but again I heard ‘periods are supposed to be painful, everything is normal.’ I was then, at 16 years old, put on an estrogen-based birth control. What I didn’t know then was that estrogen-based birth control can actually make endometriosis worse, as endometriosis makes its own supply of estrogen and adding more can be detrimental.
And unfortunately, that’s exactly what happened.
Within just a few short months of being on this birth control, my symptoms got increasingly worse. Even after reporting this to the gynecologist, I remember her saying ‘well sometimes it just takes a little time for your body to adjust to birth control.’ I was on it for several years, the entire time my symptoms were getting worse. All while being told it was normal.
Now, at 27, I have had collapsed lungs due to endometriosis in my lungs, I have lost parts of my bowels. I’ve had to have six organs removed due to hemorrhaging from endometriosis: at 26, I had to have my gallbladder removed as well as part of my cystic duct. At 27, I had my uterus, cervix, both fallopian tubes, and parts of my bowels removed.
It has invaded the muscles in nerves in my body, resulting in my brain no longer able to control them properly. It has taken over even more of my bowels and bladder, with the risk that I could lose both. It’s been in nearly every organ in my body and is slowly destroying everything.
When I was little, there were so many things I dreamed of being. Most little kids say they want to be an astronaut, a princess, a firefighter. Mine was always being a mom.
I dreamed of having my own children for as long as I can remember. I did have career goals and wants, but nothing as much as I wanted to have kids.
Before my most recent surgery in August of 2024, I was working in the car industry. Since then I have been unable to work at all.
Endometriosis has taken everything from me: my ability to have children, my freedom, my independence, the ability to have a life not filled with pain. But over and over again, I hear ‘endometriosis is just a bad period.’
It’s so much more than that. Endometriosis can destroy organs to the point of organ loss, it can even invade your brain.
For me personally, this could have ended so much differently. If I was listened to earlier there’s a chance it wouldn’t have been such a severe stage, there’s a chance I wouldn’t have lost organs due to this disease, there’s a chance I would still be able to have children one day, there’s a chance it wouldn’t have invaded nearly every organ, nerves, and muscles.
I believe my quality of life would be so much better. Instead, I’m paying for a mistake that was never mine.
I started a TikTok page, @chr0nically.ill, which documents my experience with stage 4 endometriosis, for so many reasons. But I wanted others to know they weren’t alone.
I speak about a lot of the ugly that goes along with this. I’ve shared some of the worst parts of what I’ve gone through because I know there’s always someone out there going through the same thing, who may need someone else to not feel alone.
Since then I’ve had so many women reach out to me on how to advocate for themselves. I’ve had women reach out saying my page helped them through some of their toughest times.
It’s been amazing—my only goal with this page was, ‘if I can help just one person, then that’s enough for me.’ The best way to advocate for yourself is to stand your ground.
If a doctor refuses to do testing for your symptoms, let the doctor know ‘I would like this documented in my chart that you have refused to do testing for symptoms of xyz.’
More times than not, a doctor will order testing at that point—because if they don’t, and something is found later on, they could face a lawsuit.
I would also say—just believe in yourself. You know your body better than anyone. Yes, doctors went to school to study these diseases, but most of them aren’t living with these diseases. It doesn’t matter how long a doctor studies, they still won’t understand or get it like someone living with it.
Another way to advocate for yourself is to bring a support person, someone with you who can stand up and say, ‘Yes, I’ve seen them going through this pain,’ or ‘Yes, I’ve seen them having those symptoms.’
Ideally, I would like to continue raising awareness in any way possible. A lot of people have heard of endometriosis but aren’t actually aware of how damaging it can be.
As for me, I have no idea what my future looks like.
Medical-wise, I am getting infusions directly into my bladder twice a week. After that, I have three surgery procedures scheduled for my nerves which have been affected by endometriosis.
I try not to plan exactly what I want my life to look like anymore. I don’t want to ever be disappointed if I feel like I’m not meeting my goals due to my health.
I hope someday I’ll be able to adopt children and have a family. I’ve thought about possibly going back to school to become a nurse.
Right now, I’m trying to bring as much awareness to this disease as possible—that’s a major goal of mine. I would love to be an advocate and speak openly on platforms about the reality of endometriosis.
Do you have a unique experience or personal story to share? See our Reader Submissions Guide and then email the My Turn team at [email protected].
The post I Begged Doctors To Help for 15 Years—Now My Diagnosis Has Come Too Late appeared first on Newsweek.
