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The Importance of Self Advocacy: My Journey With Endometriosis and Medical Gaslighting

This article is written by a student writer from the Her Campus at U Mass Amherst chapter.

Endometriosis is a disease in which tissues similar to the ones that line the inside of the uterus (the endometrium) also grow outside of the uterus. This leads to the development of scar tissue and adhesions, causing the individual organs to be bound together. Endometriosis is typically painful, especially during menstrual periods and ovulation. This disease can also cause symptoms like pain with intercourse (during or after sex), pain with urination and/or bowel movements, heavy bleeding, bloating, fatigue, and sometimes infertility. Symptoms and treatment options vary from person to person. This condition affects individuals with female reproductive organs. 

When I first started showing symptoms of endometriosis, it was the summer going into my final year of middle school. I was experiencing pain that I had never felt before, a stabbing and twisting feeling in my pelvis. As the pain grew to be intolerable, my mom insisted that we should go to the hospital, thinking that my appendix may have burst. Upon arriving at the emergency room, we waited for hours before being brought to a room, where I was then given an IV of morphine to help the pain, and an ultrasound to figure out what was causing my symptoms. 

Although I didn’t realize it at the moment, what happened next was what would be my first of many experiences with medical gaslighting. The male doctor who prescribed me morphine came to speak to me, informing me that my ultrasound was clear and that I was just a little girl about to get my period for the first time, invalidating the pain (which was bad enough to give me narcotics) I was enduring with a smirk. 

Many people have heard of the word gaslighting, which is when one person dismisses what another person is saying, causing them to doubt themselves. Gaslighting can also appear in the medical field, creating the term medical gaslighting. Medical Gaslighting is when a healthcare professional does not take a patient seriously, dismissing their symptoms or concerns as something vague (stress, being “dramatic”, etc.). By dismissing the patient’s complaints, they may be misdiagnosed or go without the correct treatment, worsening the patient’s health and/or causing the patient to second-guess their own symptoms. Medical gaslighting typically occurs with patients who are women and/or people of color.   

A few weeks after my hospital visit, my very first period arrived. When I started feeling the same type of pain and seeing so much blood in my underwear, I was confused about how none of my friends ever complained about the horrible symptoms we women endure while menstruating. I had heard them mention period cramps, but my symptoms were a lot more than aggravating. My pain was causing me to cry while going to the bathroom, my bleeding was heavy enough to go through a handful of super plus tampons in the span of a couple of hours, and my body was so exhausted that I could not go to school. 

These symptoms continued for years, and with each year my list of symptoms got longer. During this era of trying to figure out what was going on with my body, I met with a plethora of doctors, yet birth control pills were tossed at me like candy in order to mask my symptoms (typical western medicine in women’s health!). Slowly I began advocating for myself because I knew based on what I had read from articles online that I had been experiencing symptoms of endometriosis. With each doctor I met with, I was persistent with the fact that they needed to treat me for endometriosis, but every doctor dismissed my pain similarly to the doctor I met the summer it all began. The smirk of superiority was always there, because who was I to tell a medical professional what was going on with my body? 

With each negative experience, my mental health declined. I was experiencing the trauma of medical gaslighting: depression, anxiety, etc. This is unfortunately common for women who are searching for an endometriosis diagnosis due to the normalization and stigmatization around women’s pain. 

It wasn’t until six years after that first emergency room visit that I met with a doctor who actually listened to me about my struggles. He then performed a phenomenal laparoscopy, furthermore diagnosing me with stage four endometriosis, a diagnosis which was bittersweet. 

Through self-advocacy, I was able to receive the treatment I deserve, while also developing a passion for advocating for women’s health. Since being diagnosed with endometriosis, I have attempted to share my experience with other uterus owners in hopes to inform others about the ongoing issues in women’s healthcare!

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Mia Frazier

U Mass Amherst '24

Mia is a Junior at UMass Amherst majoring in Sociology! She is passionate about advocating for women's health and environmental health. A few of her hobbies are gardening, reading, traveling, and art!