Misdiagnosed: A Woman’s Health Crisis
How Endometriosis Prepared Me for a Pandemic
Hello all you strong, beautiful people! I am Madelyn Morneault, also known as, Miss Misdiagnosis: a local Austin artist on medical leave, desperately attempting to conquer a personal health crisis. After years of strategizing in the shadows, I was finally called to the climactic battle of invasive yet life-changing surgery. I donned my armor of fuzzy socks and with a hot water bottle in hand prepared to defend myself against an invisible enemy. However, I never imagined stepping onto the battlefield only to find it decimated by the wake of a global pandemic. Now, I’m anxiously waiting in the bunker, hot water bottle drawn like a sword, waiting until it’s safe to charge.
Due to COVID_19, the world is slowly beginning to discover the dangers presented by an invisible illness: a universal term for medical conditions not easily seen with the naked eye, but often characterized by the visible symptoms. The able-body community is beginning to grasp the complexities and surrounding stigmas of invisible illness, the pitfalls it exposes in our medical system, and how forced social isolation dramatically affects the human psyche. These are concepts that warriors of invisible illness have been desperately trying to carry into the mainstream conversation for years. Now, I highly doubt I have to tell you that waiting for surgery amidst a global health crisis presents a set of incredibly unique obstacles. Nonetheless, a collection of universal truths must be shared in hopes the world is collectively becoming slightly more empathetic to those battling a life changing illness.
So what is my invisible illness? In all honesty I wish my answer held no real gravity or substance to the story. In an ideal world the label of my disease or disability would hold no bearing on both the medical and emotional treatment I receive. Alas, the name holds discriminatory power against those affected: endometriosis. This illness is often labeled as a “woman’s disease” and yes, I have personally heard this phrase used by healthcare professionals. Endometriosis, despite ranking in the top twenty of most painful diseases by the NHS, is highly under researched, underfunded, and understood. The Center for Endometriosis Care defines endometriosis as ‘a disease characterized by the presence of endometrial-like tissue found outside the uterus.’ Lesions are then created as the surrounding tissue breaks down and bleeds with hormonal stimulation (menstrual cycles). The body responds to this by depositing scar tissue (adhesions) that continue to build and cause intense pressure, nerve pain, and possible organ damage. Before I was diagnosed with a “woman’s trouble”, doctors were desperately attempting to discover what was causing my debilitating pain. In my first year of college I was constantly in and out of the ER with unexplained stomach bugs, nerve pain, constant vomiting, etc. When I lost 20 pounds in less than two weeks in the summer of 2019, I was hospitalized to be poked, prodded, and dissected. After a full week a group of doctors chose these words to convince me why I no longer needed to be hospitalized despite my worsening symptoms:
“There is nothing that warrants your pain. The explanation must be psychiatric.”
This was the misdiagnosis that forced me to transform from patient to advocate; victim to warrior. It most certainly wasn’t my first misdiagnosis nor would it be my last. I have been battling depression, anxiety, abdominal pain, loss of appetite, severe nausea, and fatigue since I was just 13 years old. I remember being rushed to the hospital one night when my father suspected appendicitis. I frantically tried to explain my pain, but could not find the words to accurately describe the anguish I felt in that moment. To my recollection, I was only able to muster the words “like knives” like a broken record. After some bloodwork and an ultrasound, the nurse shrugged her shoulders and told me it was just my time of the month combined with bad acid reflux. Bewildered, I informed her that I had yet to get my first period, but received no further response. Unaware of my own naivety, I asked what they could give me for the pain and was gravely disappointed when they handed me over-the-counter antacids. I went home deeply embarrassed, assuming everyone perceived me as an overdramatic teenager who just wanted to make a scene. Skip a few years to age 16 and I started missing school on a monthly schedule. I was told the pain was simply something I needed to learn how to cope with because I have a uterus: a stepping stone on the journey to womanhood. They stuffed me with birth control and hormonal treatments that gradually made things worse, bringing unwelcome side effects like weight fluctuations, intense mood swings, nausea, and more (*fact: hormone manipulation does NOT treat endometriosis itself, but only serves to suppress symptoms in some cases). After the Nuvaring landed me in the ER with a constantly purging stomach, doctors assumed lowering my estrogen levels would fix the problem considering increasing them did the exact opposite. I settled for a low-estrogen birth control pill and buried the pain. I assumed this was the best it could get.
At 20 years old my health took a deep dive without warning while training as a performer at Sam Houston State University. Dance was my first love; a fifteen year long relationship filled with blood, sweat, tears, and indescribable passion. But all of a sudden, my body was failing to recover from the constant conditioning I was so used to. The all over body pains and severe fatigue carried over from one dance class the next, constantly building each day. Every morning I felt like I had pulled a new muscle; I cried from the amount of pain and energy it took to get out of bed and put on my leotard. By the time I actually walked into dance class my legs were shaking and my vision was blurry. I began crashing to the ground performing leaps I had been doing for years. The audible gasps from the class felt like my permanent instrumental backtrack. Mortified, with tears in my eyes and a forced smile, I lied through my teeth: “I’m fine, I’m fine! It’s just my ankle injury acting up”. I was angry, confused, and honestly thought I just didn’t have what it took to be a performer on the big stage. My body wasn’t strong enough to handle it, I wasn’t strong enough to handle it (or so I thought).
At this point, chronic illness hadn’t entered my mind as a possibility because I didn’t even know my condition existed.
I stopped enjoying performances — a real personal breaking point. All I could do was push through the pain and exhaustion; by the end of it my brain was so clouded that I couldn’t even hear the applause. I lost my faith in not only performing, but also my body. I slipped into suicidal idealizations but I was too embarrassed to speak out, convinced I would suffer judgmental stigma instead of legitimized treatment. Unfortunately, I was correct. When I finally sought help at my university they put me on a 2 month waiting list to see a counselor, but I knew I needed some kind of medical approach. At the end of my rope, I confessed my desperation to my parents and we collectively decided I would not return for the Spring semester for the sake of my well-being.
I genuinely felt like I had to sacrifice my freedom and dreams for my health.
After moving back home to Austin, I enrolled in a semester of community college while regularly seeing a psychiatrist. It didn’t help. I struggled to get out of bed every single day, my body weighing a thousand pounds with indescribable fatigue and aches. I continued to agree with the doctors that my symptoms were due to psychological reasons. I decided I needed to take my life in a new direction to increase my motivation and happiness, so I sought a new full time job for the summer. I secured a wonderful position as a nanny to a precious 9 year old girl with autism. This was the most “hands on” a job could get and it took every ounce of my strength to make it through the day. I loved my little girl, but I would return home, collapse on my bed, and sob because the exhaustion was so intense. Due to my emotional investment in this child’s progress, I felt quitting was not an option. I struggled to understand why my depression and anxiety was impacting my body in such a profound way; I again felt like a failure. I’m sure as the reader you’ve noticed a cycle by now, but at the time it was impossible for me to decipher. I broke into a million pieces and felt like the only way to escape my unexplainable pain was to take my own life. Completely hopeless, I checked myself into a psychiatric hospital as a final “hail Mary”.
“If a hospital can’t fix me… nobody can”, I thought.
Little did I know how much this theory would later be dissected, gutted, and re-examined just like my deteriorating body.
After seven days I was released from the hospital with new medications, therapists, and a more positive perspective on my self worth. Yet, there was something in my gut that told me there was more to my story than anxiety and depression; something was medically off. I asked for a plethora of blood tests searching for answers to my constant body pains, fatigue, and nausea. They, of course, all came back normal. I had no other option than to suck it up and frantically add the “solutions” doctors insisted would correct my lifestyle: yoga, supplements, and every different kind of diet under the sun. My internal dialogue consisted of convincing myself that I simply needed to work a little harder. I felt confident that I could continue my education and transferred to the University of Texas at Austin. As my confidence soared in a new environment, I desperately tried to ignore the signs that my body was reaching a new breaking point. Unfortunately, my stubborn (and naive) attitude received a rude awakening every month, for 2 weeks, with violent episodes that can only be described as uncontrollable: muscle spasms, body shakes, sweats, dizziness, and purging of all bodily fluids. The first time I thought it was the flu, then food poisoning, and eventually even blamed myself for unknowingly triggering my history of anorexia. This was a false and baseless accusation, but it’s an explanation I was given by a doctor after my blood work came back normal… again. Because of this, I often kept the episodes a secret fearing judgement and lack of understanding. I never wanted to vomit, I didn’t think my self worth was attached to a number on a scale, my body was simply making the decision for me. Then came the bleeding; like a period pirate on a relentless pillaging spree through every organ in my body. I had heavy menstrual bleeding for weeks on end and lost all sight of when my cycle started and ended. This led me to seek answers from my gynecologist.
“Are you willing to undergo surgery?”
“I’m desperate. At this point I will try anything. My coworker told me I might have endometriosis and I think she may be right.”
The gynecologist agreed, but warned me that she could not fit me into her schedule for 4 months. When I questioned how I was supposed to manage my symptoms in the meantime, she gave me a list of specialists to try. The title of Miss Misdiagnosis came to fruition as I received corrected diagnoses for a plethora of other problems. I learned my monthly migraine was occipital neuralgia, my gluten intolerance was really irritable bowel syndrome, and what they assumed were inner ear infections was Temporomandibular joint disorder. With a surgery scheduled, concrete answers concerning my health, and about a million new medications, I entered my second semester at UT Austin ready to hit the ground running. My body had other plans. I had what felt like a new symptom every week and was forced to drop nine of my (unrealistic) twenty-one course credit hours as I anxiously waited for surgery in March.
On March 28, 2019 I was officially diagnosed with endometriosis through a laparoscopic ablation; a procedure that uses a small camera to locate the endometriosis and vaporize the abnormal cells using heat energy. It is important to note that endometriosis can only be officially diagnosed through surgery which directly contributes to the average of 7 to 10 years women wait to be diagnosed. I count my blessing that it only took me 5 years to receive a diagnosis, but as I mull over that thought it’s striking how long women (including myself) expect to suffer. My gynecologists discovered endometriosis on my abdominal wall, uterosacral ligament, rectovaginal septum, near my bowel and bladder. With so many findings I assumed I had been under anesthesia for quite some time, but the nurse boasted that they finished in less than 2 hours. I was sent home that same day with an enormous sense of validation, accomplishment, and enthusiasm to get my life back on track.
The very next day on March 29, my older brother took his own life. It was a sharp, instant shift of focus from recovery to grief. The dynamic flipped as I became the caretaker to console my (justifiably) hysterical mother. I quickly realized that the world would not slow down for me even though I just received an incurable diagnosis. My grief greatly clouded my recovery process, never knowing if my tears stemmed from emotional or physical pain. My whole world just became one giant and confusing blur. While my body received some physical relief for the month of April, I started developing more symptoms by the month of May. The cycle of misdiagnosis once again repeated, but this time I took full notice. Even though the doctors knew for a fact that I had endometriosis, they were convinced it was not the cause of my continued symptoms because my surgery was “successful”.
The following months included a whole new line of assumptions and misdiagnoses from the gastroenterologist like Crohn’s disease, IBD, Celiac’s, etc. I received a colonoscopy in August and once again found myself in the ER. The initial procedure went as planned, but the next morning I felt a stabbing pain shoot through my torso with every breath. After an emergency cat scan the ER doctor told me he believed the procedure caused colitis and observed a sore where they had taken a biopsy. I was admitted to the hospital with the assumption they would find ulcers or a hernia. The next six days in the hospital were brutal. The stay included multiple enemas, procedures, biopsies, and 21 medications a day. 10 of which were opioids or narcotics. Test results revealed small problems and general inflammation, but no acute illnesses like Crohn’s, colitis, or IBD. This brings us back to the group of doctors that said:
“There is nothing that warrants your pain. The explanation must be psychiatric.”
In an effort to “treat” my psychological symptoms the doctors gave me a serotonin overdose; there is no way to describe it other than malpractice and abuse. I genuinely felt like I was dying; I probably would have if my parents didn’t forcibly stop the medication and remove me from the hospital. My parents made plans for me to be seen at a Houston hospital, much to the local doctor’s disapproval. Even though the doctors admitted they were out of treatment options, they refused to approve a transfer so we simply packed up and left. I have spotty memories of intensely arguing with a nurse to take my IV out after I disconnected myself from the fluids; my mother backing up my requests. Since we left the hospital without a doctor’s approval, they refused to release me with any medications and forced me to quit 21 different pills cold turkey. The transfer from one hospital to the next was by far the most physically painful day of life. I was fighting my own body like I never had before as I waited in the new ER curled up in a ball, for six hours, unable to keep down fluids, suffering violent withdrawals. I was finally admitted into the hospital after what felt like an eternity in hell, knowing I had plenty more flames left to walk through. Flash forward eight days and I was preparing to get discharged after another brutal week of scans, procedures, medications, and IV fluids. My team of doctors corrected my diagnosis as Central Pain Syndrome: generalized nerve damage in the pain pathways that causes increased sensitivity, pain, and in my case gastroparesis. In summary, every opioid and procedure only further dulled and damaged my nerves which continued to exponentially increase my pain. Through my inevitable frustration there was a slight sense of relief after receiving answers, but I was still perplexed as to what previously caused me to lose so much weight. The doctors chalked it up to my gastroparesis triggering my cyclical vomiting syndrome and IBS. Endometriosis was never put on the table as a possibility, even with my persistent questions. I was released from the hospital with minimal solutions to regain my quality of life considering everything I had been diagnosed with was both invisible and incurable. The only “cure” was my cocktail of medications and a healthy, positive, lifestyle. While these new diagnoses were accurate, a twinge in my gut alluded there were still missing pieces to my story. I was right.
As March of 2020 approached, a year after my official diagnosis, my symptoms continued to go greatly unmanaged. I continued to lose weight, medications stopped working, and doctors once again ran out of answers. Determined to break this infuriating cycle, I decided to take control and demand that I see an endometriosis specialist. My suspicion that my endometriosis returned despite my previous surgery was confirmed when I began experiencing heavy, every day menstrual bleeding for months on end. Today, my current count of consecutive bleeding days has reached 181. After an intensive search to find the right doctor, I successfully secured a surgery date with an endometriosis specialist. I was counting down the days, hours, even minutes until my excision surgery on March 9. Excision, where endometriosis is cut out surgically at the root, is the only effective treatment for endometriosis itself instead of its accompanying symptoms. When they pushed the date out to March 30th due to an OR scheduling error, I had a complete breakdown. I was at the end of my rope and the daily pain was completely unbearable. I sobbed into the phone with my nurse:
“There is no way I can wait a whole other month for surgery. I can’t take this one more damn day.”
Then the pandemic came. I was woken up by a call from the head nurse and the tone of her voice instantly gave away the news; my surgery was canceled indefinitely until further notice. I knew this news was coming, but I was desperately trying to cling on to every piece of hope I had left. I didn’t want to believe it; I went through every stage of grief within a span of 30 minutes, having zero idea what to do with myself. I grappled with the idea my procedure was considered “elective”; literally the LAST word I would ever choose to describe excision surgery. I did not elect to have this disease. I did not elect to have painful lesions and adhesions that rip apart my insides. I did not elect to endure daily pain that robs my quality of life. I did not elect to get diagnosed with an incurable and invisible illness.
While I fully understand that the risks posed by COVID-19 are too great for me to step foot into an infected hospital, the irrational part of my brain thinks, “this virus can’t possibly be worse than the pain I’m feeling now.” Yet, I know attempting to compare pain is absolutely futile. Pain is pain; whether it comes from your gut, your uterus, your lungs, or your mental state. I personally learned the dangers of comparing pain at the beginning of my journey, but this pandemic has only further solidified the lessons I gathered.
- Focus on relatability over comparability. Pain is not a contest and it never should be.
- You can not believe that absolutely no one can empathize with your pain. It creates a sense of total isolation that is not easily broken. While someone may never understand how your pain literally feels, they can understand that your circumstance prevents you from living life fully as your authentic self. It’s much easier to explain to others how pain affects your lifestyle and emotions rather than trying to describe the pain itself.
- You can’t believe your pain is invalidated by someone else’s seemingly more painful experience. Just because “things could be worse” does not mean you should settle for anything less than you deserve. This includes subpar medical care, blatant discrimination, systematic injustice, or gas lighting doctors.
The role I play in my health journey has shifted from a silent soldier to commander in chief. I used to believe my job was to “tough it out” until the doctors gave me orders to take hits on the front line. But I realized I owed it to myself to take an active role in finding a solution because life, including my own, is valuable. Coming to that realization was a long road that still hasn’t ended, but that deserves its own story!
This pandemic has made abundantly clear what chronically ill people have been saying for years: all human life is valuable no matter the state of their health. Each patient has a face, a name, a past, and their idea of the expected future.
I will not settle until I receive my surgery. I will not settle for my pain remaining unmanaged. I will not settle for doctors or peers that don’t take my illness seriously. I will not settle until I can go back to work and finish school. I will not settle for a medical system that underfunds women’s health. I most certainly will not settle for a president who values capitalism over human lives. No one elects to receive an illness, become socially isolated, completely unable to work, or grieve what they dreamt would be their future. The future is often what we take most for granted until our previous expectations of it are forcibly shattered. I am still grieving mine, but I must allow myself to do so in order to begin taking those baby steps towards recovery. The stages of grief are not linear and neither are the steps to healing. You will never experience them one in one wave, but with multiple crashing in and out with the tides all at once. I may still experience feelings of grief over the loss of my dance career, my brother who is no longer with us, or how I expected my future to play out, but I have also accepted it as my reality. I’m working through it, day by day, to channel every ounce of pain into motivation to create an even more meaningful future than I could have ever hoped to plan.
