When reading about or researching endometriosis, I often learned about the worst cases. A girl who needed to have her whole uterus removed, a woman who needed bladder reconstruction surgery, the couple who was trying to get pregnant and, for some unexplained reason, could not conceive, girls who had a multitude of surgeries—the horrific list goes on and on. I was searching for books to try to relate to stories and find ways to help my body, yet every story I came across made me terrified and anxious about my new diagnosis and the journey my body was about to embark on. The experience of reading their stories also made me realize that everyone’s journey with this disease is extremely different, yet every diagnosis is justified.
Endometriosis affects women in different ways and every woman has a story. My story (so far) is on the more moderate side; I am not an extreme case or an outlier, but I believe a common case. I got my period very young and have had horrible periods my whole life. However, I knew something was wrong in the summer of 2020, when I would feel immense pressure and pain on the left side of my pelvic. It was a deep pain. I remember describing it to my mom as something that I could feel “underneath.” It would hurt as I did an ab exercise, if I was sitting for too long, if I put any pressure on my lower belly, or sneezed the list goes on. I mentioned the pain to my PCP in my regular (virtual) check up and she suggested I see an OBGYN. She asked if anyone in my family had endometriosis, and I told her not that I am aware of.
That was the last time I heard the word “endometriosis” until December of 2021, a multitude of tests, three different doctors, and one brain MRI later. I’d found a doctor who confirmed the endometriosis diagnosis. There was a large amount of scar tissue clinging to the left side of my uterus, so much so that my uterus was tilted slightly to the left. Hence my constant pain. My doctor found what is called a “node” of endometriosis on the top of my rectum, meaning the disease was wreaking havoc on my internal organs. It hurt to pee, to go to the bathroom, and to lay on my stomach, and during the moments where the pain was minimal, I always was left wondering when it would come back.
To help with the pain, my doctor prescribed me a high dose of Orilissa and a non-estrogen birth control to help balance the night sweat, hot flashes, and mood swings which are some of the common, very difficult side effects of Orilissa. Since the medication has eradicated my period, the pain has gotten less intense, but I still have pain almost everyday and its scale creeps up to intense during a flare up. I have to trust the medication for a few more weeks, then we can discuss other options like surgery. However, through my diagnosis and pain, I have learned that a surgery or hospital stay does not make this disease “legitimate” or “justified.” What justifies it is the pain that each woman feels.
Speaking out and educating people about this disease is so important. Sadly, not enough doctors are trained in recognizing and treating endometriosis and because of that women need to advocate for themselves. We need to re-live explaining our pain over and over until someone will listen to us. We have to endure painful internal exams which, for me, results in intense pain that lasts over the next 24-48 hours. What I have learned from my experience is that endometriosis comes in all shapes and forms. One woman could have a severe case and not feel any pain. Another could be in immense pain and never need surgery. It varies, there is no cure, and no magical thing that will work for all women. I am lucky enough that for right now, I am not in and out of hospitals, and I have not had multiple surgeries. I want to use that privilege to reassure other young girls and women that this disease varies; it exists on a spectrum. No matter the amount of pain you are in, the amount of hospital stays you have had, or the amount of doctors you have seen, your diagnosis matters. Your experience matters. Pain, no matter what form, is still valid, and it is still something people live with everyday. It is important to understand that, take that in, and then act on how we can help ourselves and others.
Ellie is 24 years old from Boston. She was diagnosed with endometriosis in the past year but has struggled with painful periods her whole life. She enjoys being active, enjoying nature, reading a good book, and spending time with family and friends. Her hope is that more people will become educated about endometriosis so that treatment options are offered to women earlier in hopes they can live pain free.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.