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Gaslighting and Endometriosis: Emma's 7-Year Journey to Diagnosis
This is not intended to provide medical advice. The interview has been edited for clarity and length. Please consult your doctor for any health-related concerns.
Emma Maxwell regularly thought “maybe I am just being overdramatic” when it came to her period. Throughout middle and high school, she would bleed through a tampon, pad and her pants during a single school day. To avoid getting eye-rolls from the school nurse, she filled a friend's locker with clothes so she’d have pants to wear after her period soaked through her clothing.
“It feels like acid was poured inside my body."
For context, the typical amount of blood lost during a single period is about 2 ounces. At that rate, it should take roughly four hours for a tampon to become fully soaked. Emma’s menstrual bleeding was clearly beyond what her classmates at school were experiencing.
"It was extremely heavy and painful. But again, I normalized it because like, first, there was a lot of shame around it, and I didn't want to talk about it because I was 13 years old and thought that it was embarrassing at the time," Emma recalls.
In addition to a heavy menstrual flow, Emma experienced severe pain during her period. “It felt like barbed wire was shifting throughout my organs, twisting and scraping,” describes Emma. “It feels like acid was poured inside my body."
Despite the intensity of her symptoms, it took seven years for her to receive a diagnosis of endometriosis.
The Early Years: Misdiagnosis and Dismissal
Misdiagnoses and ineffective treatments became a frustrating cycle for Emma. “When I went to my primary care, they were like, okay, well, that’s normal. That’s just what you go through with your period. Let’s get you on birth control. This is going to fix all of your problems.” At 15 years old, Emma was put on birth control, and from ages 15 to 19, she cycled through over ten different types of birth control. “They just rapid cycled me through because I would go back and say, this is actually making me feel worse.”
The frustration of not being heard was compounded by chronic constipation. Emma recalls, “I was not going to the bathroom for weeks, months at a time. I remember not going for a month and going to the emergency room.”
Emma's Endometriosis Symptoms
Very painful periods
Extremely heavy menstrual bleeding
Irregular periods
Severe bloating (to the point of looking pregnant)
Sharp, piercing pains during periods
Shooting pains in vagina and rectum
Pelvic floor spasms that travel up to chest, back, and down legs
Loss of feeling in legs, especially left leg
Debilitating pain leaving her bedridden for 4-5 days during periods
Difficulty walking/getting to the bathroom during severe episodes
Chest pain and difficulty breathing deeply
Sharp pain under left rib
Chronic constipation
Abdominal pain
Pain during bowel movements
Pain/discomfort outside of menstrual periods
Fatigue
Brain fog
Joint pain (likely related to her Ehlers-Danlos syndrome diagnosis)
The Impact of Medical Gaslighting
Emma's journey was marked by the invalidation she faced from medical professionals. "I ended up convincing myself that I was crazy when I was in high school because all of my doctors were like, everything's coming back normal. Like you just can't handle birth control. And like, they're just side effects, essentially," Emma shares.
She recounts a particularly painful interaction with a doctor that involved gaslighting and endometriosis, "I had a doctor once ask if I was getting enough attention at home because I would come in with all of these medical problems and they're like, ‘do you have enough attention at home? Sometimes, we make things up in our brains so that, like, and then it manifests in the body.’"
More than 94% of people said their doctors have ignored or dismissed their symptoms according to an audience survey performed by Health Central.
The Turning Point: Diagnosis and Validation
After years of feeling dismissed, Emma finally received her endometriosis diagnosis at the age of 20. She describes the moment as "one of the most validating things that I've ever [experienced]." Her first surgery provided a diagnosis, but it wasn't until her second surgery with an endometriosis excision specialist that she began to see significant improvements.
"Through my excision surgery, they found endo on my colon, in my ribs, at Allen Masters windows with deep infiltrating endo going through the sidewalls of my stomach. They excised entire sidewalls. They went into the muscle layer of my bladder. I had endo on my uterus. I had and, in my rectum, in my anterior and posterior cul de sac," Emma details.
The Challenges of Living with Chronic Pain
Living with endometriosis remains a daily challenge for Emma, even after diagnosis and treatment. “It feels like it's burning through my uterus and my bladder,” she describes. Along with intense stomach pain, she was initially diagnosed with IBS. “I would have a lot of stomach pain. And I was diagnosed with IBS, which is just a blanket diagnosis when they kind of were like, we don't know what's going on. But just like a pulling pain. And I definitely have that pulling pain in my lower abdomen.”
Her pain extends beyond her abdomen, affecting other parts of her body. “In my chest with my ribs, and I would stretch a lot and try to be like, okay, well, maybe it's just like a muscle thing, but then it would cause spasms throughout my entire body.” These spasms now reach from her shoulders to her toes, causing her to lose feeling in her legs. “I use mobility aids, and I'm so grateful that I do, because I wouldn't be able to do so much without them.”
“It's so important for people to share their stories and share their experiences, even though it can be so uncomfortable and you can be met with so many people that invalidate you.”
Despite the severity of her condition, Emma often encounters skepticism and dismissal from medical professionals. “I've had doctors tell me, well, could you get yourself out of a burning building? And I was like, I don't know, probably with the adrenaline. Yeah. Because I have to do this every single day and pretend that I'm okay because it makes people uncomfortable.” This daily struggle sometimes causes her to mask her pain. “Sometimes it's just easier to mask it because people won't believe me. And I don't always want to prove myself.”
Her intense symptoms often leave her bedridden and reliant on support from family members. The emotional and physical toll of living with such a chronic condition is significant. “Sometimes it feels like I have bricks in my uterus, and it feels like it's going to just fall out or like there's a fist and it's just squeezing all of my organs,” says Emma. The persistent nature of her pain has made her aware of how others might not understand her reality. “Sometimes it's just hard to put words to the pain that I feel is just there all the time. And then I realize, oh yeah, like some people wake up and they're not in pain. What a revelation.”
Emma openly shares her health experiences to foster understanding and support among those with endometriosis. “It's so important for people to share their stories and share their experiences, even though it can be so uncomfortable and you can be met with so many people that invalidate you.” Her advocacy aims to raise awareness and encourage others to push for proper diagnosis and treatment. “I'm doing it for awareness and I'm doing it so that hopefully other doctors will see it, or people going through it and understand that they're not alone in what they're going through.”
She emphasizes the importance of finding effective pain management strategies, including heating pads, CBD products, and prescription medications. Emma regularly uses a tens machine by My Obi.
The Importance of Self-Advocacy
Emma has become a powerful voice for self-advocacy in healthcare. "Just, you know your body best and you deserve answers and care and treatment and to feel better. And there are things out there. Maybe endometriosis doesn't have a cure. Maybe these other conditions don't have a cure. But there is a way of life," she advises. Emma stresses the importance of seeking second (or even 28th) opinions if necessary.
The Power of Community and Awareness
One of the most positive outcomes of Emma's journey has been her discovery of the endometriosis community. "I think that social media is a great place to go. It may sound silly to some, but it has been one of the most helpful things for me in understanding what's going on in my body," she shares.
Through sharing her story online and connecting with others who have similar experiences, Emma has found validation, support, and valuable information about managing her condition. She now uses her platform to raise awareness about endometriosis and support others on similar journeys.
Hope for the Future
Despite the challenges she has faced, Emma remains hopeful about the future of endometriosis care. By sharing stories like hers and continuing to advocate for better understanding and treatment, she believes real change can be achieved.
"We deserve care,” says Emma. “We deserve to feel better, and we deserve medical professionals who are willing to do that."
