Imagine if your life didn’t truly start until you were 27 . . . picture yourself as an 11-year-old girl . . . just a child about to go through 16 years of medical hell.
My name is Claudia. I’m 27 from Perth, Western Australia. My personal story with endo is as unique as it is not. Unique in the fact that it is mine alone, but sadly it just as common as the millions of us suffering worldwide.
I know we each suffer differently, but, like you all, I have lived a life of being shuffled around from doctor to doctor, not knowing that I was being destroyed from the inside out.
Endometriosis has ravaged my life. I was only last year diagnosed with stage IV, after 16 years (or what feels like a lifetime) of being told I was suffering from Crohn’s disease.
My endo symptoms showed up a few months before my period did. I was 11 years old. They were terrible but turned even worse at age 15. On top of severe cramping, heavy and irregular periods, pelvic and abdominal pain, extreme bloating, nausea, diarrhoea and blood in my stool, I began experiencing severe migraines, frequent UTIs, and upper body pain including in my URQ, chest, armpit, neck and upper back. These pains were accompanied by extreme fatigue, shortness of breath and feeling faint.
After years of having every test under the sun seeing an array of specialists, having cortisone injected into my neck and trying natural routes as well, I eventually had a nerve stimulator implanted in my buttocks with electrodes placed up my spine and over my occipital nerve in my skull to try and combat the nerve signals sending pain.
For the next 10 years, I kept presenting as if in a Crohn’s flare but all testing, including colonoscopy, would come back clear. Eventually in 2017 I was told I may never have had the disease to begin with and had been misdiagnosed for the majority of my life. The doctors did not give me any other options as to why I would present with these symptoms if I did not have Crohn’s, so I started to research. That’s when I found out about Endometriosis and essentially diagnosed myself.
After undergoing an unsuccessful laparoscopy to remove disease in April, my health rapidly declined. I was 20kg down, vomiting 20+ times a day, in immense pain, bleeding from my rectum almost continuously, losing control of my bladder, unable to shower or dress myself, or to even walk from my bed to the couch. I was dependent on opioids, depressed, anxious, suicidal and terrified of what my future would hold. Every single day was unfathomable agony. I mean it, ovulating and menstruating had me in hospital a number of times.
I began joining support groups, chatting to other women with the disease and finding out everything there is to know. That’s when I discovered the Centre for Endometriosis Care in Atlanta. With concerns of the disease having travelled to my chest cavity, full of desperation, fearing for my life, and no trust left in the health system at home, I decided travelling to America for life changing surgery was my answer. I sent in my records for review, and after speaking with the team at length, it was all arranged.
I had expert excision performed on the 18th October 2018. Endometriosis was found all over my bowel, up my entire abdominal wall to the diaphragm, both pelvic sidewalls, ureters, underneath the uterus, obliterating my pouch of Douglas, both uterosacral ligaments, deeply infiltrating my left fallopian tube, endometriomas on both ovaries, near my cervix, deep rectovaginal nodules were found, my appendix was removed because of scar tissue, my left tube was attached to its own ligament, my ovary and my bowel, my right ovary was attached to its ligament and the pelvic sidewall, my sigmoid colon was attached to the pelvic sidewall. My uterus was also aggressively retroverted because of the dense adhesions.
I’m happy to report that 4 months post true expert excision, my life has changed. I feel like a new person, or rather, the real me knows what it feels like to live a life free from the shackles of this disease. Not only has excision changed my life physically, but mentally, emotionally, spiritually and even sexually. It did this by giving me hope. Each day I feel better, is a glimpse into a future I never thought possible before.
Endometriosis should not be the path of multiple, unsuccessful surgeries. It should be one surgery, done right. I’m now using my story to help educate, advocate and raise awareness for this debilitating and underrepresented disease. It takes 7 to 12 years to diagnose, I don’t want to see other young women waste their whole adolescence on misdiagnosis.