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Wellness

How I Stayed Strong While Living with Endometriosis

By Sofia Dishongh

For the past year, I have had two endoscopies, a colonoscopy, many blood tests and biopsies, two CT scans, an MRI and have been to the emergency room numerous times to the point that nurses at the hospital near my university immediately recognize me. I don’t even flinch when an IV needle is placed into me. Every month, for two weeks, I am a normal functioning ecstatic college student, a tenacious force to reckon with and hell-bent on conquering the world. However, during the week before my period, everything comes to a halt and I am rendered disabled. I begin having bouts of nausea that consist of me vomiting food and blood, nosebleeds, complete exhaustion, severe abdominal, hip, and back pain, along with pulsing pains equivalent to being kicked in the balls. When Mother Nature finally arrives with my oh-so-special gift, I become extremely weak and cannot even ease out of bed without screaming due to the excruciating pain.

Since getting my period at the early age of nine, I always experienced a great deal of pain during my time of the month and some irregular symptoms. However, I assumed all of this was normal. While it was fairly manageable during my elementary and middle school years, in high school this changed drastically. Slowly, I began missing a day of school and vomiting for no reason during my sophomore year. This eventually transformed into me being absent whenever I had my period during the second semester of my senior year, to the point that a concerned teacher informed the school nurse they were worried about me skipping class since I was missing all of my tests. After visiting a variety of medical professionals from gastrointestinal specialists to gynecologists, the diagnosis was inconclusive. Although my symptoms were similar to endometriosis, as many young girls experiencing these issues are told, “I was too young to have endometriosis,” according to almost every single gynecologist we visited.

Last year, during the second semester of my first year of college, I was diagnosed with an H. Pylori infection. H. Pylori is a stomach bacteria that increases one’s risk of gastric cancer and causes stomach ulcers. I went from having a perfect attendance record during my first semester of college to vomiting blood every single night and being in immense pain, leading to me leaving my first year of college early for treatment purposes. After a lengthy period of treatment, I finally tested negative for H. Pylori in September. During my battle with H. Pylori, one source of light was that sometimes endometriosis-like symptoms can be caused by H. Pylori, signifying that once I was finally rid of the H. Pylori, hopefully there would be no endometriosis symptoms. Of course, this failed to be the case. A week after testing negative, I began vomiting uncontrollably with abdominal pain and ended up in the emergency room. The testing, medical visits, and procedures ensued and during the first day of my monthly “gift,” I always ended up in the emergency room.    

After years of this strenuous cycle, I have finally received a clinical diagnosis for endometriosis and am in the process of going to a center to start treatment. Despite finally having a diagnosis, endometriosis is incurable and chronic. I am divulging the details of one of my darkest ongoing battles, not for the sake of sympathy or reverence, but for others dealing with the issues of chronic illness and pain.

While our experiences differ and I cannot speak for your circumstances, I understand. I know how difficult it is when you feel healthy and on top of the world, but can become downtrodden, weak and in excruciating pain the next. I understand wishing your main issues revolved around “normal” stuff like, “Ugh I have so much homework and two exams on Friday,” and “Does this person like me?” instead of wondering if you will be able to get out of bed today or rushing to give a presentation on sea legs after taking Vicodin because the pain will not stop and you feel as if you cannot afford to miss more class. I understand the heartbreak when someone dear to you is unable to empathize and leaves.

I also completely feel the frustration that comes with people criticizing your diet or suggesting strange cures when they possess no knowledge of your illness. This especially hits hard when people fail to comprehend that if it were as easy and uncomplicated as giving up the suggested food, you would in a heartbeat, just to stop the continual suffering. Even though it can be annoying, remember that these usually unwelcome suggestions tend to come out of care, concern and a desire to see you happy and accomplishing all that you want to achieve.

Nevertheless, balancing an illness that impacts me so much as a driven student and professional becomes increasingly difficult especially when I am forced to pass up potential opportunities since it is a flare up kind of day. I also understand the mental effects of dealing with chronic pain. You may question, as I did many times, whether it is worth dealing with chronic symptoms that take such a toll, cause so much suffering and seemingly prevent you from living a worthwhile life when no cure is present.

If this is your stance, as it was mine, I implore you to reconsider. While this path is a not an easy one, you are brave, strong and have so much to offer. You have surpassed all of the obstacles thrown your way for a reason, and I encourage you to look beyond this arduous situation. Enjoy the moments in which you feel happy and good, embrace the magnificence of the world around you and go for the gusto. Because you can.

                                                                                               

Alaina Leary is an award-winning editor and journalist. She is currently the communications manager of the nonprofit We Need Diverse Books and the senior editor of Equally Wed Magazine. Her work has been published in New York Times, Washington Post, Healthline, Teen Vogue, Cosmopolitan, Boston Globe Magazine, and more. In 2017, she was awarded a Bookbuilders of Boston scholarship for her dedication to amplifying marginalized voices and advocating for an equitable publishing and media industry. Alaina lives in Boston with her wife and their two cats.