Over half my life just to diagnose Endometriosis
Chelsea
State: Ohio
Congressional District: OH02
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Diseases
Chronic Pain, Liver Disease, Mental Health, Rare Disease, Reproductive Disease
Issues and Challenges
Chelsea has encountered: Access to Expert Providers, Insurance Issues, Medical Records Access, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Financial Assistance, Gaslighting, Invisible Illness, Involuntary Hospitalization / Commitment, Job Insecurity / Loss, Medical Devices, Medical Discrimination, Suicide / Self-harm
My Story
My symptoms began, now looking back, when I was 8 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. Tossed on many meds that only increased symptoms and added others.
Finally, they had me on a clear liquid diet, for three months. Then they tested my gall bladder. They discovered it wasn’t working properly and removed it. The symptoms did not get 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, 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. 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.
I'm now 3 months post op from colon resection and rectal prolapse repair. I'm also 2 weeks into new symptoms and discovering my liver is 3 times it's normal size. Awaiting further appointments, along with appointments for my back injury that resulted early on, with those "relationship problems", into domestic violence. I have spinal cord stimulators from that experience, and now suffering thoracic pain and strain daily. Just had MRI & will discuss results soon. I've looked at them myself, and I'm just about ready to give up. With the liver added on it makes it hard to determine what the point is. But I keep on keeping on.
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. We are also collaborating with Project 514 415, a London, UK based endometriosis project building global submissions with an open call to be made into a published book, and also a traveling exhibition and events. Our team is UK based, with a Scotland Collaborator and myself with Getting the Better of Endo and Worldwide EndoMarch here in the USA. We have been driven by the injustices our community has faced for decades.
My Motivation and Inspiration
My children and my family are the biggest motivations in my life. I am inspired by developing better paths for their future. I have developed an entire personality around endometriosis advocacy into mental health and a little with domestic violence when I can.
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