It Took Over Half My Life to Diagnose Endometriosis

My symptoms began, now looking back, when I was 8/9 years old. I began passing out randomly, having stomach pain and GI scopes beginning as a child. Only showing inflammation — I was basically told nothing was wrong.

As the years went by, my symptoms increased. By high school I was still passing out, but more often. The pain sent me to the emergency room for possible appendicitis often, to the point they turned me right back around or held me in waiting forever — until cysts began to form on my ovaries. Although something was showing in tests, I was told it was just 'a part of becoming a woman' and they would pop and go away on their own.

I began getting sick, vomiting, losing weight, and doctors began passing me back and forth like a lab rat to gastroenterology, then to neurology, and the allergist. All showing “nothing of concern,” yet I was experiencing great concern. I was entered into therapy, where I was told it was all in my head. and placed into mental hospitalizations. Then given many meds that only increased symptoms and added others.

Finally, they had me on a clear liquid diet, for three months, practically as an experiment it felt. Then they tested my gall bladder. They discovered it was failing and removed it. The symptoms did not get much better, and I continued to get worse.

Basically, I lost hope in healthcare and in myself. My mental health really took a turn. I almost gave up on life, but I kept going thanks to those who believed me and saw me and the pain for what it really was - debilitating. Over the years I just lived like that, which caused strain on everyday life from waking up, relationships, jobs, to simply living.

After not being able to take it much longer I began my own research journey, which led me to endometriosis. It led me to an entire community and information I had no idea existed. I realized how misunderstood this disease was, and thought, “Wow, this might be it!” I reached out to my gynecologist here in Lancaster, OH. I should have researched a little more, because I found the hard way that most professionals do not know how to find it! I was told I was clear as a whistle after he performed my first laparoscopy in the beginning of October 2018.

Gut feelings told me to get back into the community and dig, which led me to finding one of the limited specialists in Ohio, located in Columbus. Dr. Mini Somasundaram with Ohio Health heard my story and got me in for an emergency surgery that same month. She ended up finding and removing endometriosis on my colon, rectum, and bladder at the end of October 2018.

It took over 15 years of my (then) 24 years of life, to find out what was truly wrong with me. Dr. Somasundaram has always been honest about not being the best, but she is skilled and trained, willing to learn and advance — she saved my life!

After that surgery, it released the strangulated organs, but sadly created another complication of my undiagnosed disease: rectal bleeding. I had developed hemorrhoids from being strangulated inside and they started bleeding in December of 2018. For a year I worked with a colorectal surgeon in treatments and upkeep, until finally it was time to have them removed.

As we began surgery talk, I discovered I was pregnant. With the rectal bleeding, mine was a high risk pregnancy. I was very sick the first trimester and into the second. Discomfort in my rear end constantly, and cramping. It was still beautiful to experience, but I was miserable. I ended up giving birth naturally. Contractions lasted 30 to 45 minutes with 3 to 5 minute breaks. This has been determined to be caused by distraught pelvic floor muscles from years of undiagnosed disease. I am just thankful that we got through that one.

Three months later I had the hemorrhoidectomy. A month after that I was right back in for another removal of endometriosis on my large intestine, a hysterectomy because of adenomyosis (inflammation and abnormal growth of the uterine lining inside the uterine walls), and was diagnosed with interstitial cystitis (painful bladder syndrome). This happened in April 2022. I ended up with relief and resumed normal activity again for a few months.

Six months later symptoms slowly increased again. Hard to go to the bathroom, pain lower abdominal areas, nausea and vomiting, then the rear end pressure like I’ve never felt before. I knew something must be off again, so I was scheduled back in to get looked over.

By August of 2023 I was recovering from a colon resection and rectal prolapse repair surgery. By September of 2023 I had new symptoms and discovered my liver is 3 times it's normal size. We have done a CT Scan that has shown partial concerns with bile duct inflammation, extra thymic tissue present, and even a few small lung nodules, but not enough for action at the moment unfortunately. We have done an MRI that showed a partial bowel loop, then a colonoscopy that was yet again clear. I am also in the mist of appointments for my back injury that resulted early on, with those "relationship problems" that lead into domestic violence. I have spinal cord stimulators from that experience, and now suffering thoracic pain and strain even more. I feel like I am back into a, lingering phase. Trying to connect the dots. Promary Care has stepped up a lot and I even see Rheumatology soon for Autoimmune discussions.

I am currently managing symptoms with an array of avenues. Having doctors appointments almost weekly for pelvic floor therapy and pain management, to procedures for bladder installations and Botox injections for my pelvic floor muscles, on into self discovered avenues like diet adjustments and medical marijuana avenues.

I submitted my nonprofit status as Getting the Better of Endometriosis March of 2023. My mother and husband are on my board for now, and we are slowly getting things going. We have been to DC and met with representatives, myself hosting Worldwide EndoMarch as research assistant and Ohio Representative. We have begun a growing petition with Worldwide EndoMarch to get action moving with the Department of Justice for a class action investigation into the care the endometriosis is receiving., and have started the conversation with elected officials in Washignton, D.C including the new Vice President elect JD Vance’s Health team. I have also become the USA CEO of SATIREV, a London, UK based art, literature, and research based project building global submissions with an open call for published book, and also traveling exhibitions, events and workshops. Our team is Internationally based. We all have been driven by the injustices our community has faced for decades.

This has led me further collaborations and joining others with similar missions such as The Autoimmune Alliance including events and authored opportunities for their News Network, The Invisible Voice. When we share lived experiences we can shatter the stigmas placed in society that keep many individuals weighed down, ignored, and failed.