My story may sound similar to many Endometriosis warriors. Each of our journeys are different, and each is valid. I have gained great comfort in reading and hearing others’ journeys, but for many years I felt alone, misunderstood, and isolated. Endo is just one piece of my medical puzzle. We’ll shine a light on the other diagnoses in future posts.
My pain started when I was 12 years old, a year after I started my menstrual cycle. I don’t remember much about the pain in those early years, but I do remember that I felt confused and alone. Twenty years in, I still struggle to find the words to describe the pain because it varies and the symptoms change. I wish I could better express this aspect of my Endometriosis experience, but I think it is important to understand that the pain and symptoms are different for each individual.
At first it seemed like it was always my stomach or GI issues. One night, when I was in middle school, I was in so much pain. It felt like my abdomen was tearing in half, I was terrified. My mom took me to the hospital that night. We were in the emergency room for hours. I don’t remember much of what the doctors did or how they evaluated me, but I remember feeling hopeful that I was finally seeing the experts. I thought to myself, “I’m going to be OK. They are going to figure this out”.
I was wrong. They told us it was gas pains and sent me on my way. Little did I know this was just the beginning of a long, exhausting, and debilitating journey.
That hospital visit was a pivotal moment. After that, my cries for help were always met with: “you’re fine”, “everything’s normal,” and just “suck it up,” since after all that’s what the doctors said. So, I did just that. I tried to never let anyone see how much pain or discomfort I was really in. This wreaked havoc on my emotional health and relationships during my most formative years.
When I was in college and had a little more freedom and control over my life, I started to reach out to medical professionals. By this point, I was learning that most of my friends did not experience the same pain each month, nor did they have the “stomach issues” I had, which were labeled as normal.
There was always a dull isolated ache in the lower left side of my abdomen. Like a headache you just can’t shake. Before and during my period it felt like I was getting stabbed in the abdomen with a knife that was dipped in hot bubbly acid. The sharp pain would twist and turn, it was all consuming and would knock the wind right out of my chest. At times it felt like my belly button was unraveling inside. It felt like there was something on the wall of my abdomen under my belly button. It was as if this something was peeling away from my inner abdomen wall, from the top down. Slowly pulling and tearing along the way.
My symptoms progressed over the years. Back pain that would only increase. What felt like a ball formed between my left shoulder blade and spine, and it was slowly getting bigger. Day by day. Bowel movements before and during my period would be crippling. The internal pain that came with this would come on strong and fast. Leaving me clutching onto anything that would keep me upright. Struggling to remain conscious while the sheer amount of pain would bring that awful battle between being freezing cold and sweating uncontrollably. During these flares I would have to do everything I could to not pass out. Mentally trying to calm myself down and talk myself through it, “we’ve been through this, you’re not going to die, you’ll get through this again, just hold on.” It felt as if all of my organs and muscles were all fused together, not able to flex or move as they’re supposed to.
The anxiety of not knowing when these flare ups were going to start can be overwhelming. My legs have buckled from a shooting jolt of immense pain while in the middle of conversations at work. I’ve also collapsed in the bathroom at work, a few times. There, holding onto the stall wall, I’d panic about how long I’ve been away from my desk or a meeting. “Have I been here too long? Who is going to notice? This is so embarrassing.” Meanwhile I’m still trying to fight to breathe.
My health issues impacted every aspect of my life. I always needed to know where the nearest bathroom was, never knowing when the next time my colon was going to spasm. I was always in pain. Before, in the middle of, and after my period. Essentially three weeks out of the month. On week four, I’d collapse from the exhaustion of surviving the past three. There was no escape. I needed to learn how to become an advocate for my health and attempt to figure out what was going on.
I have been privileged to have health insurance which creates the ability to continue to pursue a diagnosis. You name it, I’ve probably been tested for it. To list a few, I have had two colonoscopies, an endoscopy, hydrogen breath tests, barium swallow tests, multiple MRIs, countless blood work, and many other tests I can’t even remember the names of. Everything always looked fine, just some inflammation. Never answers. Doctors would say, “Well you look fine, but you should take this medicine if you’re really not feeling that well”. I have tried so many different kinds of medicines, all which have either created additional side effects or provided zero relief.
I was young and looked “healthy” on the outside. But on the inside I was struggling to survive. I was made to feel like I was crazy, weak, and told too many times that I was being dramatic.
I have seen too many specialists to count. Bouncing from doctor to doctor. I got tossed into the bucket of being diagnosed with Irritable Bowel Syndrome (IBS). At first I was grateful for a name, something I could say and associate all of the pain to. I quickly realized the broad definition of IBS and how it was a dead end for help or any further explanation.
There were too many cycles of: crippling pain, fed up with the pain, determination to seek help, research, finding a new doctor, getting an appointment, meeting the doctor with such hope, explaining my medical history novel, being prescribed follow up tests or procedures, going through with the tests and procedures, getting the results, being told I’m fine, take this medicine (it might make the liver stop working but it should reduce the colon spasms), taking the medicine out of desperation, side effects start or it provides zero relief, stop taking medicine, doctor says there’s nothing else they can do for me, I give up, a few flare ups of crippling pain, get fed up with the pain… and the cycle continues.
The key here is: Do not give up. Do not stop after one cycle. Keep going. Keep advocating.
This should not be our reality. We should be seen and heard. Endometriosis should be known throughout the GI and OBGYN world. Endometriosis should be known throughout the world. Period. (Pun intended)
It’s known that diet and exercise are key to a healthy lifestyle. I have tried every kind of diet or lifestyle change that has been associated or advertised to help. I have tried yoga, exercise, physical therapy, meditation, hobbies, you name it. (I will dive more into these in a future post) If someone reaches out in regards to their pain or symptoms experienced from their chronic disease, they are not looking for your opinion on how to “fix” or “solve” their symptom at hand. They are looking for understanding and acknowledgement of their disease. Although the things listed here may bring someone temporary relief, the suggestion minimizes our pain, symptoms, and disease. This is not the time to peddle your snake oil.
In 2017 I was looking for a new OBGYN. I booked the first appointment I could get at a practice I was referred to by my coworkers. I couldn’t see the doctor I was originally referred to, but the doctor I saw on that very first visit is the person who has had the biggest impact on my life thus far. That very first visit was unlike any other appointment I’ve ever had for one reason: she listened. She was concerned. She heard every word I said and took me seriously. She took the time to examine me. There have been so many doctors who never look up from their computer or notepad. Something as simple as eye contact meant the world to me in a doctors office.
Since that appointment, my medical journey took a turn. I was no longer in this by myself. The road was still bumpy, painful, and at times devastating, but the fact that this doctor listened and never gave up on me is something I will forever be grateful for. Let’s take a minute for that to sink in. I am so grateful for one person who simply was doing their job.
My first laparoscopy was in November of 2018. Finally, confirmation of Endometriosis (and a few other things we’ll get to in other posts). This was a bittersweet moment. Validation. I am not crazy. I am not weak. This is real. Cool, but now what? Here we are, after years of struggling, I have a firm diagnosis, yet no cure. No help. No solution.
It is so hard to wrap your brain around something that doesn’t have a straightforward answer. So there’s this disease, it causes this pain, but that’s it. There are ways to “manage the symptoms,” but there is currently no cure.
Following the surgery in 2018, I did see a reduction in my symptoms, but the crippling pain that came with bowel movements did not go away. After two years of still trying to manage the pain, my amazing doctor referred me to a specialist who focuses only on Endometriosis and routinely performs extensive excision laparoscopies.
Learning about this surgeon and their patented surgical technique, introduced me to a whole new world. In this new world, doctors and those with Endometriosis come together, they fight for more research and a cure, and they continue to push to spread awareness. I was fortunate to be able to make the travel and cost for this surgeon work.
The first time I called the office to make an appointment, I was blown away by how kind and understanding everyone was that I spoke to. When I went into the office for my first appointment, the kindness and understanding continued. It was unlike anything I’ve ever experienced. The entire office created an inviting, comforting, and safe environment.
In December of 2020 I went in for my second surgery. This time it was more extensive and dedicated to finding and removing Endometriosis. One of my amazing surgeons had a list of all of my symptoms written on a piece of paper. They were reviewed with me right before I went into the operating room. This is the same list of symptoms I have seen multiple previous doctors crumple up and throw in a garbage can right in front of me. This surgeon took her time revisiting each symptom with me. She then took her notes from the piece of paper and manually entered them into her phone, just in case she lost the paper. That determination to get to the root cause of each symptom while performing surgery is what I have been looking for. The surgery went well. I heard such joy and pride in my surgeon’s voice as she went back through each symptom on the list and explained how it correlated to a specific location where Endometriosis was found.
It is fascinating to look back on how accurate my descriptions were about the location of my pain. The constant throbbing in my lower left side of my abdomen – that was my ovary and uterus inflamed and pushing on each other, constantly. The ball that I felt under my left shoulder blade that just kept growing – that was a nodule or build up of Endo continuing to grow on my left ureter. The crippling pain with bowel movements – a ton of Endo on my rectum. When we live with a chronic illness, we become so intune with our bodies. And yet, we are ignored.
The recovery for this surgery was difficult. I am still recovering. I am so grateful for this experience and have been living without most of my Endo symptoms since. But that doesn’t mean I’m pain free, or exhaustion free. It’s been difficult navigating life post-op. Excision surgery is considered the gold standard for treating Endo, but it’s not magic. My surgeons made that clear to me. Endometriosis is a chronic disease. Abdominal surgery in itself comes with a long recovery too. It was during this recovery, in between vomiting, when I was inspired to create EndoColumn.
I am hopeful I will continue to manage my Endometriosis symptoms and continue to reclaim my life. I am now equipped with a community of fellow Endo warriors who provide continuous inspiration, support, and encouragement. I have learned the power of being kind to myself. Respecting my body when it needs to rest. I have also learned to advocate for myself, and how essential that is in life.
Thank you for reading, and taking a step to better understand what it’s like for me to live with Endometriosis. Can you relate to my story? Leave a comment below or reach out via email, endocolumn@gmail.com. I would love to hear from you!
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