I started having really bad stomach issues when I was 9 years old, but things got so much worse when I got my first period at age 11. I didn’t understand why I was in so much more pain every month than any of my friends.
By 10th grade, the nausea, vomiting, diarrhea, and sharp abdominal pain were so bad every single day, I could barely get to school in the morning, and when I did, I would go straight to the nurse’s office.
My parents took me to all the best doctors in New Jersey and New York City; they would do lab work and imaging and then tell us that everything looked fine. But I knew I was experiencing real pain.
My mom asked some of the doctors if it could be endometriosis, a painful condition in which tissue similar to the lining of the uterus grows all over the pelvic area. She knew about the condition only because after I was born by C-section, her doctor said to her, Wow, you had so much endometriosis, I can’t believe you were able to get pregnant!
But the doctors just shook their heads and said, “No, endometriosis only affects the reproductive organs, so that’s not it,” or, “She’s too young to have endometriosis.” Instead, they told me it was a case of severe anxiety.
From that moment on, I was considered a mental health patient. It became a mind game: Maybe they’re right. Maybe I’m just thinking about the pain too much, and that’s causing me to have even more pain. I tried meditation and mindfulness, and my doctor even sent me to a Lamaze class full of pregnant women to learn how to breathe through the pain. Nothing helped.
I was so pissed off. I was a kid—I wanted to be playing soccer and hanging out with my friends, but that was impossible. I made up a lot of excuses for all the school I missed, like I had a virus or an ear infection, because who wants the cute boys at school to know you were home all day with diarrhea?
When the Effects Got Worse
By the time I was 16, I couldn’t even go to school anymore. To keep up my education, my school mandated that I go to an outpatient psychiatric program, where I would do intense group therapy and one-on-one therapy all morning, and then come to school at 4 p.m. and meet with my teachers to go over my classwork. I missed out on so much of my high school experience.
Thankfully, at the beginning of 12th grade, my doctor prescribed an antispasmodic medication that controlled some of the pain. The three days a month I had my period were horrible—I’ve seen movies where women give birth and that’s what it felt like for me. But the rest of the month, I was able to function well enough to go to class, so at least I had my senior year back.
After I graduated, I was excited to start college in New York City, but in a case of terrible timing, the antispasmodic stopped working during my freshman year.
I was sharing a bathroom with three roommates, and I was constantly in there, which they weren’t thrilled about. When they went out on the weekends, all I wanted to do was stay in bed with my heating pad.
Because I didn’t have a name for my condition, no one understood why I had to cancel plans all the time. I decided to move back home and transfer to a local college, where I eventually graduated with a business degree.
Finally Finding a Doctor Who Listened
Even though I was told the pain was all in my head, I knew there had to be an answer if I could just find the right doctor. I went through every gastroenterologist and ob/gyn in my insurance network, more than 50 doctors overall.
Some offered antidepressants or suggested I go on hormonal birth control, or they even recommended going into medically induced early menopause to control the pain. I was only in my early 20s! Besides, I had done enough research on my own to know that suppressing my symptoms wouldn’t help with the underlying problem, and it might even make things worse down the line.
Finally, after I had exhausted all the doctors who took my insurance, I decided I’d rather go into debt than continue living with the pain. I googled “endometriosis specialist” and found a world-renowned doctor who was out of my network but agreed to see me.
When I met with him, he said, “I believe you, and I am willing to do surgery to see what’s going on.” I had to drain my 401(k) and put the rest on my credit card to pay for the surgery. It ruined me financially, but it was the best decision I ever made.
READ MORE ON ENDOMETRIOSIS SURGERY
In May 2023, at age 26, I went in for excision surgery. When I woke up, the doctor was standing by my bedside: He grabbed my hand and said, “How did you live like this?”
The surgery had taken more than six hours, and he found and removed 73 endometrial lesions in my ovaries, fallopian tubes, and colon. They were covering my bladder, bowel, rectum, uterus, and appendix, and both abdominal sidewalls.
This wasn’t a mental health issue. This was years of damage from untreated endometrial disease, because no one believed that someone so young could have this problem.
The author on a ski trip post-surgery
A New Life
I was sore after the surgery—it felt like I had done a million sit-ups—but I would take that pain any day over what I had gone through every time I had my period.
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Within weeks, everything in my life changed. Just a few months before the surgery, I was in a shopping mall and couldn’t walk past more than a few stores without having to sit down because of a stabbing pain in my side. After surgery, I started running on the treadmill, because I could! Before the surgery, if I drank even a tiny sip of water, I would immediately keel over in pain. Now I love chugging down bottles of water. I’m the most well-hydrated person ever!
One of the nicest surprises has been how my energy levels have changed. I used to say I wasn’t a morning person, and now I’m up at 7 a.m. feeling fully rested and restored.
When I thought about all the pain I went through and the years of other people not believing me and the physical pain I was dealing with, it inspired me to create EndoExcisionForAll.org, a nonprofit to help other women get information, referrals, and funding for excision surgery.
Most gynecological surgeons are trained only in ablation surgery, which burns or destroys the surface of visible endometriosis lesions but doesn’t remove the disease from the underlying tissue. Excision surgery involves carefully cutting out the endometriosis lesions from their roots while preserving healthy tissue whenever possible. Most insurance companies won’t reimburse doctors who do excision surgery at a high enough rate, so women have to pay for it out of pocket.
The author advocating for women’s health
I want to tell all women and girls who are experiencing unexplained abdominal pain: Don’t listen to doctors who are dismissing you. Just because it says on their website that they treat endometriosis, it doesn’t mean they have any specific training in the condition. Always ask specifics about their training, and if they won’t listen to you—or if they say it’s all in your head—keep going until you find someone who believes you.
All About Endometriosis and Why It’s Hard to Diagnose
An estimated 1 in 10 women develop endometriosis, with uterus-like tissue often found on the ovaries and fallopian tubes, but it can spread to the rectum, bladder, and intestines; in some cases it can even travel as far as the heart or lungs.
“Endometriosis used to be thought of as a hormonally driven disease, and there absolutely is a hormone component to it. But the more that we’re learning about the disease and how it functions, we’re realizing endometriosis is a whole-body, systemic, neuroinflammatory and neuroimmune condition,” says Mallory Stuparich, M.D., a gynecological surgeon in Los Alamitos, CA, and a member of Endometriosis Surgical Specialists International (ESSI).
It takes the average woman 7 to 10 years to get a diagnosis, according to the Endometriosis Foundation of America. Dr. Stuparich says there are overlapping reasons for this.
First of all, society is much more accepting of women being in pain, she says. “The medical establishment also needs to do a better job of educating clinicians about the signs and symptoms of endometriosis,” she says, adding that though it is definitely possible to diagnose endometriosis via MRI and ultrasound, you need to find a clinician who is specifically trained to see the subtle signs.
Symptoms of endometriosis vary, but can include:
- Pelvic, abdominal, and/or back pain
- Painful periods
- Heavy bleeding during periods
- Nausea, vomiting, constipation, and/or diarrhea
- Infertility
- Chronic fatigue
- Pain during sex
Treating Endometriosis
The first line of treatment offered to most women often involves pelvic floor physical therapy, NSAIDs, hormonal birth control, and inducing early menopause through medications.
Doctors may also consider a hysterectomy (removal of the uterus), though it may not help cases where the lesions are outside the uterus.
“I think all of us wish there was a medicine that we could guarantee will make the endometriosis dissolve, but unfortunately that medicine does not exist,” says Dr. Stuparich.
For many women, the best path to relief is surgery to remove the endometrial lesions. The two types of surgery:
Ablation Surgery
This surgery, more often covered by insurance, uses lasers to burn off the lesions. “Imagine there’s a weed growing in a garden,” says Dr. Stuparich. “Ablation is like, Okay, I’m going to take a blowtorch or cut the leaves of the weed off, but I’m not going into the dirt to scoop out the root. You might get deep enough to destroy some of the roots, but it’s a coin toss as to whether or not you actually destroyed the roots.”
Excision Surgery
This surgery, which is often considered “out of network” by insurance, involves removing all signs of visible disease wherever it is found in the body. “Excision actually digs into the dirt, and it gets the entire root ball out, so there’s a much lower chance of recurrence when compared to ablation,” Dr. Stuparich explains.
If you’re suffering from endometriosis symptoms and you feel your doctor isn’t taking you seriously or offering enough solutions, seek out a doctor who specializes in
endometriosis.
“The patient is the expert on their body. Nobody else can be the expert on what they are experiencing on a day-to-day basis,” says Dr. Stuparich. “If you’re getting a sense that this person has either exhausted their resources in what they can do for you or doesn’t even believe what’s happening to you, it is very reasonable to say, ‘Thank you for your time,’ and move on to get another opinion.”
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