I have been living with endometriosis officially for 8 years, but I have been symptomatic for around 15 years. On average, it is said that it takes between 8-10 years for an endometriosis diagnosis. A lot of this is purely due to discrimination on multiple levels and intersections.
Ranging from discrimination based on gender and weight to class and race — it can seem as though we are speaking to a wall when trying to express our conditions. Doctors across the board seem to disregard anything related to menstrual cycles, calling various symptoms “normal.”
But what is normal about debilitating pain, projectile vomiting, and heavy, intense menses? By the time I received my diagnosis, I was already at severe stage 4 endometriosis, and the reality is: Had I been listened to much earlier, this would likely have been a very different outcome.
The refusal of adequate endometriosis care is what kept me in the same space — chasing answers, coming up empty, and being dismissed for years.
‘I felt like talking about my illness was a weakness’
One of the things that stands out to me is the fact that whenever I would express distress or any emotion that didn’t fit the “strong Black woman” trope, even as a teenager, I would be looked at as if I had suddenly sprouted a second head.
The doctor would express some variation of the same sentiment: “Well, yes, there’s no cure, but it’s not cancer, and it won’t kill you.”
As if that was the balm for whatever ailed me. It didn’t make me feel better, it silenced me and made me feel like talking about my illness was a weakness. As if because it isn’t cancer, I should be grateful and not complain.
It isn’t that simple. I still felt sick every day, and every day is a challenge. The lack of serious intervention from healthcare professionals meant that my condition continued to deteriorate, and the symptoms I complained about were not attended to.
If I expressed difficulties with walking, lower back pain, or headaches, they would be dismissed as unrelated to my condition.
In 2021 my condition had started to take hold of me. I was in constant severe pain, I battled with fatigue, I struggled to walk without pain, my abdomen became so sensitive that I couldn’t wear pants or anything with a waistband.
I went to see a new specialist in the hope that I may get the necessary care and that my life would return to some semblance of normalcy. The specialist confirmed that my condition was quite advanced and severe. He was transparent and let me know the surgery may not be entirely life-changing because of the stage that the endometriosis had reached.
‘I had the most severe case the specialist had ever seen’
He let me know that it would likely be a very long surgery and that they estimated it would take around 5 hours. I woke up in the Intensive Care Unit (ICU), with medical equipment all over me, attached to me, and around me.
The nurse let me know that I had been in surgery for an entire 12 hours, and because of that, they needed to keep me in ICU to monitor my condition.
I was floored. In my entire medical experience, doctors had always shut me down and told me that while this was an incurable chronic disease, it wasn’t dangerous and it wouldn’t kill me. Yet I found myself exceptionally unwell and in ICU.
My specialist said that in all his years treating endometriosis, I had the most severe case he had ever seen. He explained that it was absolutely everywhere: I had a frozen pelvis, my bowels were attached to my uterus, the endometriosis had attached to my uterosacral ligaments, and had affected the nerves that caused the pain when I was walking.
He told me that he had found multiple masses and that the endometriosis extended way beyond the reproductive system. He found endometriosis all the way up to my kidneys, creating havoc between the ureter and bladder: It was constricting my ureter so severely that the surgeons attempted to remove it from the left ureter.
Within a few days, I was transferred to a regular hospital ward, wherein I had to start walking and going to the bathroom by myself. I pushed myself because I wanted to go home. It was way beyond the dates we had initially planned for my release.
‘I was in ICU fighting for my life’
But soon after the doctors discharged me from the hospital, my condition deteriorated. I had had surgeries for endometriosis before and knew something was wrong. My mother called my specialist, who suggested I come in for blood tests and a CT scan the following day.
I felt awful by morning. The pain and nausea felt like they wouldn’t relent. I couldn’t eat anything, but I knew I needed to go for the tests. We returned home, and I went back to bed. I fell asleep, and I was awakened by severe pain, soaked in a cold sweat.
I tried to make my way to the bathroom, where I projectile vomited and called for my mother. I felt as if I couldn’t walk and told my mother to call the doctor and an ambulance. By the time the ambulance arrived, I was slipping in and out of consciousness and couldn’t speak or walk by myself. I was soaked in sweat and running a fever.
The ambulance rushed me to the hospital, where my specialist waited for me and reviewed my test results. He informed my mother that I had sepsis, while he started me on an IV of antibiotics, fluids, and pain medication.
He explained that due to the damage to my ureter when the endometriosis was removed from it, the scan showed necrosis of the bottom of the ureter, which had been emptying urine into my abdomen. The urine in my abdomen had played a part in the sepsis and the development of abscesses in the abdomen.
The doctor quickly recommended emergency surgery and called on the expertise of a urologist. Together, they quickly opened me back up and reimplanted my ureter into my bladder. As well as stenting it, they inserted a semi-permanent catheter and flushed out my abdomen of any infections and fluid.
I spend several weeks in ICU on intensive antibiotics, requiring physiotherapy, and experiencing additional complications from all the medical traumas.
I recalled how I had been told endometriosis wasn’t deadly and wouldn’t kill me, yet I was in ICU fighting for my life, unable to breathe on my own. I resented the medical professionals who dismissed me for so many years — because of their neglect my condition had got to the point of no return.
I ended up requiring another surgery because my bowels had attached to each other and caused severe pain and inflammation. The inflammation was so severe that both of my lungs had collapsed.
There I was yet again –—fighting for my life due to endometriosis. I couldn’t eat for weeks, I lost weight and needed to be sustained with an IV until I could eventually have liquids.
The most frustrating and heartbreaking part of it all is not the multiple surgeries and long hospital stays but the “what ifs.” I wondered about how different my situation would have been had someone taken the time to listen to me, take my concerns seriously, investigate and do additional research before disregarding my experiences and symptoms.
I imagined how different my life would be, had I received adequate care and early intervention. Maybe it wouldn’t have gotten so out of control, maybe it would have been contained at a more moderate stage.
The discrimination and disregard for people with endometriosis need to stop, and medical professionals need to be honest about endometriosis. If they don’t know how to treat it, that’s fine, but then they should research or refer the patient to a specialist instead of insisting that endometriosis is not life-threatening or dangerous.
My story and several others’ with severe endometriosis are a testament to how life-threatening it is. If the consequences of severe endometriosis were known widely, I believe they would force healthcare providers to take action and remain accountable and proactive in providing access to endometriosis care.
The care for endometriosis, in my view, should include early intervention to prevent the disease from creating further havoc if this can be avoided. The stigma associated with women’s healthcare remains a factor in unnecessary deaths and illness worldwide.
My hope is that sharing my story will inspire others to advocate for themselves, motivate people to research endometriosis more, and funders to invest in researching endometriosis. No one deserves to be disregarded when looking for medical assistance.