This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
I’ve been dealing with chronic pain for as long as I can remember. At four years old, I developed cyclical vomiting syndrome, a disorder that causes nausea and vomiting. As I got older the episodes went away. But when I was 13 and started my period, things began to ramp up again.
Every month when my period came, I’d get nauseous and fatigued. I was slightly concerned, but I was used to dealing with those symptoms when I was younger, and I also thought I was experiencing normal period pain.
By the time I was 16, my periods were super heavy and irregular. I bled pretty much three weeks out of the month. That’s when I started thinking, This is not okay. I need to get this regulated. My ob-gyn put me on birth control pills. It helped me stay on somewhat of a regular schedule, but that only lasted for so long.
I went to college about three hours away from my home in Austin, Texas. That’s when my body really started saying, Hey, you need to pay attention to me.
I was doing musical theater and taking dance classes, learning how to be a performer. I enjoyed it, but I was also frustrated and thought, Why can’t I be as flexible as those other girls? Why can’t I jump as high? I was so sore all the time and I didn’t know why.
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I would also have these random pain episodes that made me throw up, and I couldn’t hold down water. I went to the emergency room four times freshman year. My doctors and I thought it was food poisoning, and then we thought it was a virus.
A turn for the worse
Things became very difficult and isolating for me in the first semester of my sophomore year. I was in so much pain every morning that I couldn't get out of bed. The worst of it was in my abdomen, hips, and lower back, but it would often radiate down my legs, too.
My parents and health care professionals kept telling me, “You’re just anxious, you need psychological help.” I remember asking my general practitioner to perform bloodwork to check my thyroid in the hopes of finding an explanation for why I was constantly fatigued. When the bloodwork came back normal, he encouraged me to seek out a therapist and said, "When you can get your anxiety under control, you can get your symptoms under control."
To be fair, I was anxious and depressed. But it was because I was physically deteriorating and losing my ability to train. I was like, “What am I going to do if I can’t be a performer?”
My university put me on a three-month waitlist for a psychologist, and basically I had this mental breakdown and told my mom, “I don’t know what’s going on, but I can’t get out of bed.” I moved back home to Austin in December 2017.
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I transferred to Austin Community College, and after another year of flare-ups and feeling depressed, I went back to my original gynecologist in March 2019. I basically begged her for a laparoscopy to see if endometriosis was the problem. [Editor’s note: A laparoscopy is when the doctor makes a small incision in the abdomen and inserts a thin tube with a light and camera to view the pelvic region.]
Based on what she found, she also performed laparoscopic ablation surgery to remove endometrial tissue—but the procedure removes the surface layer of tissue only. It doesn't stop the disease, and in my case, the disease was progressing.
An unexpected tragedy
The very next day, March 29, my older brother took his own life. I remember running around trying to help my mom get things together and barely even resting from surgery. I got a diagnosis and then, bam, I had to focus on this other thing. It honestly feels like it happened so long ago because he left my life years before he died. But it was very difficult.
I spent the months that followed dealing with family stuff and managing symptoms. Then I wound up hospitalized for two weeks in August 2019. Again, I couldn’t keep water down. I was in so much pain, constantly throwing up.
I was like, “I think it might be the endo.” But the doctors told me, “It can’t be endo because you had surgery in March.” They took scans, and then said, “Well, we did all these tests. There’s nothing that warrants your pain, so it must be psychological.” I fought the diagnosis at first. But they just didn’t care to continue down that road investigating what was going on because they didn’t know.
So many doctors don’t understand endometriosis, and they think that laparoscopic ablation or birth control pills solve everything, which they don’t. And if a doctor doesn’t believe that or doesn't know that, there’s no way I’ll be able to convince them.
One positive thing about that particular trip to the hospital was that my partner, Jacob, was with me. We’d met the month before, in July. He was absolutely the first person to believe me when I said I was in pain. Because when you have an invisible illness you don’t have to just convince the doctors, you have to convince your friends, you have to convince your family, you have to convince your parents.
Even when people do believe you’re in pain, they might not want to deal with it. I had a couple of friends who were like, “Oh well, you can’t go out anymore so you’re not invited to stuff.” You fall out of the group chats. My ex-boyfriend before I met Jacob broke up with me after three years together because my endo pain was becoming a daily thing and it very much influenced our sex life (one possible side effect of endometriosis is painful sex). He just told me, “I don’t want to do this anymore.”
But Jacob wasn’t like that. He never questioned anything I said. He took me at my word and respected my intelligence. I was able to have a healthy sex life with him. If it hurt or I said, “I need to stop,” it was never a problem.
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More heartbreak—and another dismissive doctor
On January 23, 2020, Jacob was killed in a motorcycle accident—taken in an instant.
People in my life assumed that I was staying home and lying in bed because I was in grief, not because I was still in a lot of pain. But it was both. That’s one of the hardest things for doctors to understand, too: They think that if you’re struggling with something emotionally, it’s automatically the only explanation for your physical pain.
That’s what happened when I went to a doctor in late February to discuss excision surgery. This type of surgery cuts out the diseased tissue down to clear margins, unlike ablation surgery, which just lasers off what's visible.
This doctor asked me, “How’s your home life? Are you doing okay?” And I said, “Well, my partner passed away.” That turned into the doctor saying, “Everything’s fine. You’re just in grief.” And I was like, “Yes. I am. Very much so. But also, there are some other things going on.”
He eventually agreed to do the excision surgery and put me through MRIs and different pre-op procedures. But then I had to come back for an emergency appointment because I was in so much pain. It felt like there was a 10,000-pound stone sitting at the bottom of my pelvis. I told the doctor, “I know my surgery is in a couple of weeks, I just want to let you know what’s going on.”
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He gave me an exam that was so painful I was holding back screams. He literally said, while his hand was inside of me, “It just seems like you have a really low pain tolerance.” And then he pulled his hand out and he’s like, “The anatomy is normal. It’s just a little inflamed. And we got your MRIs back and it’s all clear, so I’m actually going to cancel your surgery.”
I lost it. I replied, “You can’t do this. If you said I had endo that needed to be removed before, doesn’t it still exist even if it doesn’t show on the MRI?” And he just wouldn’t budge. It was very obvious that he made this decision before I walked into the room. And so I was like, “So there’s nothing you can do to help me?” And he was like, “Well, we can keep giving you birth control.”
He also advised me to stop touching myself, because I’d told him I’d given myself a self-exam. He was like, “Oh, no, no. You can’t do that. You can’t put things up your vagina. You can’t put your fingers up there.”
It was mind-blowing. Like, “Just ignoring it? That’s your treatment for this horrible pain and disease?” And it’s also very oppressive and violating to have doctor tell me I can’t touch my own body. I ended up leaving.
Validation
My friend recommended I go to a specific medical office in Houston, which I did, and the doctor there referred me to another surgeon she called the “endometriosis queen.” She told me, “You need to go see her.”
So I went in, and the doctor looked at my case history and records and said, “It looks like you have stage 2 endo, so we need to get that excised as soon as possible.” I just started crying.
I had my excision surgery on June 16, 2020. The doctor handed me my pictures afterward, and I thought, Holy crap. This was what my body looked like inside? There was brown-and-red splattered endo adhesions everywhere.
The first time I stood up after the surgery, I didn't have any of the hip pain that plagued me for so long. That's because I had endometriosis growths on my hip ligaments, and the growths were removed during surgery. I believe this explains why I couldn't get the splits in college and struggled with my legs in dance.
Unfortunately, they also found endo on my diaphragm, and my gynecologist is not trained to operate there. So I’ll need to have another surgery.
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What other women need to know
I personally feel like I would have received proper treatment much sooner if I didn't give dismissive or rude doctors second, third, and fourth chances. I should have just kept looking for a doctor who listened to me right off the bat.
So my advice to women in a similar situation is to remember that you don’t owe a dismissive doctor anything, and the more you educate yourself about your condition and rights as a patient, the better you can advocate for yourself. Now I have a medical journal and a file of medical records that I take with me to every doctor's appointment; I write down my symptoms, questions, and goals for the appointment beforehand.
I also started speaking out about my experience roughly a year ago, after that traumatic doctor’s appointment in February 2019, when the doctor told me I needed to stop touching myself. I’ve written articles, shared my story on Instagram, and created a website where I can advocate on behalf of myself and others who are fighting this disease.
My mom and dad were a little worried at first about how public I’ve made my journey. They were like, “We don’t want you to focus on that so much. We don’t want that to be your life. It’s not what defines you.”
And it’s like, I get that. But it is my life right now, and I am constantly thinking about this—so why not channel it and figure something out where I can be useful? Because I know there are other women out there that are suffering in silence, and I don’t feel comfortable not doing anything.
If you have a story to share about being misdiagnosed, email us at misdiagnosed@health.com and join our Misdiagnosed Facebook community to talk to women who share the same struggle.