Written by CSC Intended Parent – Christina Pearce
I have been private for quite some time; however, I felt the need to share my story with others in hopes it will bring awareness and spark change. The prevalence is so high, meanwhile Endo lacks funding, education and awareness to address the population. Many of you may have a mother, daughter, sister, aunt, niece, cousin or friend in need – often the information is not accessible or there is misinformation in the media. So many people suffer in silence, and women’s health matters. Know that you are not alone.
Endometriosis is a chronic, debilitating disease. It has been found on every major organ in the body including the lungs, diaphragm, bladder, bowel, kidneys and even the brain. In severe instances, it can cause kidney death, bowel blockage, lung collapse, organ dysfunction and nerve damage. There is still a misconception surrounding the disease; it is not solely a gynaecological condition, or confined to the pelvis as the media so often projects. It is more than just a bad period.
Endo affects 1 in 10 individuals assigned female at birth, yet is still widely misunderstood. On average, diagnosis can take upwards of 7 to 10 years as it presents as a multitude of conditions. Endometriosis does not work in isolation, but rather interacts with multiple organs and effectively can become full body. The medical professions general knowledge is limited, and as such, a multidisciplinary approach is key to treating it. More funding is desperately needed to improve research, raise awareness and ultimately work towards a cure.
I’ve always been an active, healthy person, be it running track in high school, playing rep soccer or hiking. It wasn’t until 2021 that I started exhibiting debilitating health symptoms that prevented me from working and doing daily activities.
At the start of 2021, I underwent an urgent colonoscopy. The nature of my symptoms was deemed, at the time, Crohn’s Disease due to a family history. Following the procedure, I met with the Gastroenterologist; biopsies were sent off with strong suspicions of bowel cancer. A CT scan was ordered, and I was back at the hospital 2 days later. What was initially thought to be bowel cancer was not the case. The CT confirmed a mass with “malignant” characteristics of Ovarian Cancer and I was immediately referred to an Oncologist at the hospital’s cancer centre.
Several days later, I returned to the cancer unit to meet with the Oncologist for CA125 cancer screening, further biopsies and an MRI. And then I waited. The MRI later confirmed deep infiltrative Endometriosis throughout my body. Following this, the Oncologist sent off a referral to Mount Sinai Hospital to an Endometriosis specialist and discharged me. She stated that I no longer needed her care.
I waited until 2022 for my referral to be accepted; however in the interim, my symptoms continued to escalate. In August of 2021, I found myself in the ER again, and after routine tests that suspected appendicitis, the results were in fact moderate/severe kidney disease. The ER doctor sat me down to review my tests and bloodwork, and in doing so says “So what does your Urologist say?” implying that I’d already been seen by one. Of course I’m in disbelief and respond “What do you mean Urologist? Why would I have a Urologist?”
This information was all a surprise to me. In that moment, the ER doctor paged the Urologist on site at the hospital and put in an urgent referral for a renal scan of my kidneys. The renal scan confirmed the inevitable – my left kidney was non functioning. But how does this happen? This silent kidney loss, otherwise known as Hydronephrosis, was caused by the Endo essentially blocking the flow of urine surrounding my left ureter to my bladder, causing back flow to the kidney, and over time effectively killing it. I later met with a Urological surgeon at Mount Sinai who was apart of my multidisciplinary surgical team.
Come 2022, my referral was accepted by an Endometriosis Excision Specialist who is also a Urogynecologist and Neuropelveologist at Mount Sinai Hospital. I’m very blessed as he is the only doctor in Canada with this specialty and who can excise Endo from the nerves. Over the course of the year, I underwent more tests: bloodwork, ultrasounds, sigmoidoscopy, cystoscopies and urodynamic testing of my bladder to name a few. And the wait continued!
With the backlog of surgeries due to Covid, my surgical dates got shifted around several times. Plus, the added complication of a full day OR needed and scheduling doctors from 3 different disciplines – gynaecology, colorectal and urology. Finally, I got the call!
In July of 2024, I underwent a 10 hour surgery.
This encompassed radical excision of Endometriosis throughout my pelvis, uterus, bladder, bowel, kidneys and nerves. A large portion of my bowel was removed due to Endo penetrating through the bowel wall and a temporary stoma and ileostomy was needed, plus an appendectomy. Urology performed a ureterolysis of my left ureter and reconstructed my bladder. A hysterectomy was also needed due to confirmed Adenomyosis of my uterus. Additionally, Endo was found around my sacral plexus nerve, sciatic nerve, glute muscle and 2 arteries on my left leg. I was discharged from the hospital after 8 days.
Recovery has been difficult, but I’m feeling hopeful. Initially, walking was a challenge and I needed to gain mobility of my left leg again. Physiotherapy has proven to be helpful and I’m slowing gaining my strength back. I will be undergoing an upcoming surgery to repair my bowel and address the ileostomy. We are also pursuing surrogacy as the only viable option.
Endometriosis has taught me how important it is to advocate for yourself and your health. You know your body better than anyone else. Awareness is key; advocacy is key. Trust yourself, push for answers and know that you’re not alone. Endo is a silent illness; you never know what people are dealing with. I’m hoping this information will reach someone that needs it. 💛🙏
Please join me in pushing for the change that is needed and spreading awareness!
M(Other) starring Angela