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Unveiling the Journey: Battling Medical Dismissal and Finding Hope with Endometriosis - Aubrey Svensson’s Endo Story

Unveiling the Journey: Battling Medical Dismissal and Finding Hope with Endometriosis - Aubrey Svensson’s Endo Story

*trigger warning for references to medical trauma*

 

June 26, 2023, will forever be the day that changed my life.

My name is Aubrey Svensson, and I am an incoming M1 medical student. I graduated with a degree in psychology from The Ohio State University in May of 2023. I am proud to call myself an Endo Warrior, and I hope my story will help anyone reading know that they’re not alone and always deserve to take up space.

My health journey began in January of 2021 when I visited my primary care doctor for unusual symptoms, including brain fog, intense fatigue (sleeping up to 16 hours a day), dimmed vision/”visual snow,” low blood pressure, lightheadedness, and intense upper back muscle pain. I never imagined this would result in referrals for a brain CT scan, heart ultrasound, heart rhythm test, brain MRI, cervical spine MRI, chest CT scan, and retina/optic nerve test. I also saw a cardiologist, ophthalmologist, neurologist, neuromuscular specialist, orthopedist, physical therapist, optometrist, neuro-ophthalmologist, rheumatologist, somnologist, and gynecologist. Still, I had no answers as to why I was experiencing these symptoms or what was happening in my body.

Before 2021, I never had any notable GI symptoms or concerns. However, in mid-August, I had an episode of constipation for 15 days that took extreme measures to relieve (and resulted in a rectal prolapse), and things were not the same since then. I tried gluten-free, dairy-free, plant-based, and low fructan diets. I took various medications and supplements, including sucrase supplements, methane suppressants, motility activators, probiotics, digestive enzymes, and laxatives. Nothing relieved my symptoms. As the months continued, my GI symptoms progressed to include severe abdominal bloating and distention (particularly within the minutes after eating), frequent and painful supragastric belching after meals, intense nausea (with infrequent vomiting), gas pains, and significant mucus in my stools. I also had many GI scopes, all of which came back normal.

One of the most glaring symptoms was chronic upper back pain. I went to multiple chiropractors and received deep tissue massages, acupuncture, cupping, physical therapy, and dry needling. I regularly stretched, foam rolled, used a percussive gun, and exercised. None of it provided significant relief. I had many setbacks, including an emergency surgery due to a collapsed lung, the result of the provider puncturing my lung during the dry needling process. Because of this horrendous experience, I decided to manage my pain myself the best I could.

Lastly, because of my intense periods, I ended up in the ER in 2021 due to a sudden onset of fierce abdominal pain, weakness, nausea, and syncope. Because nobody was able to help me figure out what happened, I had no other tangible options besides starting a birth control pill. It helped me tolerate the pain better, though much still persisted (including more severe hip and pelvic pain that manifested early in 2023). I regularly described the pain as feeling like there was a bowling ball sitting on my pelvis, trying to “push” its way out. This pain persisted throughout the month.

Although it only took me three years to receive my diagnosis (compared to the average of 10 years), I saw over 30 doctors (compared to the average of eight). Researching my symptoms and prepping for/going to appointments was much more than a full-time job. Among these countless professionals, not one mentioned the possibility of me having endometriosis. It was my aunt, who began having endometriosis symptoms in her early 20s, who later suggested I might have it. It was finally confirmed via laparoscopy (LAPEX surgery = the current gold standard for diagnosis and management) on June 26 that I had widespread stage II endo. A significant amount of the disease was found in and around my bladder, rectum, and ovaries, and my appendix was removed due to abnormalities (common in women with endo). Since the surgery, I’ve been able to eat three meals a day again, get through days without napping, and experience such minimal pain levels that I haven’t felt since I was 15. Although I still have much of my recovery ahead of me, I already feel like I am living in a different body.

It is also important to note that throughout those three years, I faced incredibly dark and challenging times due to how much I was dismissed, even by some of the top-ranked doctors in my city and state. Some statements I’ve heard from doctors include:

  • “I question your intelligence.”

  • “This is your normal.” 

  • “You can’t understand this now, but you will be a burden to your future family.”

  • “You need to get your anxiety under control first.”

  • “It must not be that bad because you get good grades.”

  • “You can keep getting tests if you want, but it’s not necessary.” (This came from the provider who was in denial that they punctured my lung.)

I heard these comments while, at home, I was living the “hidden side” of having a chronic illness:

  • Taking four- to five-hour naps before and after being in most social/public settings (e.g., taking an exam or getting coffee with a friend).

  • Sobbing in agonizing pain every day.

  • Slowly eating less and less, as anything I ate made me incredibly sick and nauseous (resulting in me avoiding food in nearly every public setting unless I knew I could rest immediately after).

  • Being pulled away from exercise, my biggest hobby and passion, due to the intense post-workout pain and fatigue.

From intermittently needing a wheelchair to being unable to drive at times, my symptoms affected every aspect of my life. I gradually felt more and more “lost” from my true self as this disease ate away at my body, and being repeatedly dismissed ate away at my soul.

I want to be very clear about one thing: my gratitude for each and every healthcare worker I’ve encountered is infinite. However, as someone who believes all doctors and providers should prioritize healing at every step, being personally launched toward the deep end of suffering, dismissal, and pain is traumatizing. At the core of every diagnosis is the quality of the physician-patient relationship, and it can be extremely dangerous if this quality is compromised. Dismissal may be an easier option than investigating a diagnosis by exclusion, but the impact it can have on the patient goes way beyond what appears on the surface.

You deserve to feel heard and valued by your provider. Nobody knows your body better than yourself–when something is wrong, never stop advocating until you get your answers. Endometriosis can be a terrifying disease, but you are not alone. Completing my degree and getting accepted into medical school was infinitely more difficult; however, at every stage (with or without a diagnosis), I took control and told myself that my illness did not define me. You are so much more than your disease. Save your spoons for what takes the most priority in your life and leave the rest for self-care.

Now more than ever, I am ready to dedicate my life and career to patient advocacy and being a patient-centered physician. Although this experience is difficult and often triggering for me to discuss, I have worked hard to channel those emotions into fueling my passion to be the best doctor I can be.

Lastly, I want to thank my family and friends who helped me through these past few years. I truly would not be in this position without you.