My Most Dangerous ER Experience and How My Advocate Saved My Life

A story of medical gaslighting, negligence and neglect that very nearly caused my untimely death - and how my accidental advocate (untrained and unprepared) saved my life.

Aug 03, 2024

This is the fifth and final article in my series about the experience of going to the hospital when you’re disabled and/or chronically ill. The series began when I wrote a piece called “I Won’t Go to the ER Unless I’m Literally Dying.” The responses confirmed what I knew to be true based on my own personal experience - which is that many disabled people are terrified of ending up in the hospital and go to great lengths to avoid it. You can find Part 2 - Tips for Surviving a Hospital Trip When Chronically Ill here and Part 3 - How to Stay Covid Safe When in Hospital here.

Part 4 in the series was ‘How to be an Effective Advocate for a Disabled Patient’ and highlighted the importance of having someone with you whenever you need the hospital. It was designed to help advocates learn WHY they’re necessary and how to be the best possible advocate they can be.

This is an issue that’s near and dear to my heart because I almost lost my life to medical negligence in my early twenties - and it was an unexpected advocate who saved me. If I had been alone I have no doubt I wouldn’t be here today. I feel the need to add a content warning to this post - for medical errors, gaslighting and fertility and gynaecological issues. I hope you will read on - but if these issues are difficult for you please feel free to skip and/or revisit in small chunks when you feel able. Safeguarding our mental health is also an important part of the disabled experience.

The First Time I Knew Something was ‘Wrong’

When I was 13 I got my first period. My experience was not like my friends. It was incredibly painful - literally knocking the wind out of me and leaving me stuck on the bathroom floor for days. I bled so much that I would need to lay in the bathtub just to try and cut down on sanitary products. Something was definitely ‘wrong.’

Unfortunately I was repeatedly told my experience WAS normal until I was 19 and an OB GYN suggested I might have endometriosis. She performed an exploratory surgery and confirmed the diagnosis but offered no treatment beyond birth control pills.

The next few years of my life would be spent suffering horrendously painful and heavy periods - but also growing increasingly weak from severe anemia. I kept going to gynaecologists trying to find one who was actually willing to HELP me - since birth control pills weren’t cutting it. I had six surgeries to try and remove the endometriosis and lessen the symptoms - but each time relief was incredibly short lived and the disease came back worse than before.

Anemia, No Ferritin and the First Signs of POTS

By the time I was 24 - my anemia had become so severe that I was having weekly iron injections. They were painful and often sidelined me for an entire day because my hip would dislocate and bruise severely. Despite these injections my hemoglobin was barely holding at 70… and my ferritin stores had dropped to zero. For those not familiar with typical labs - it is highly unusual and concerning to have a ferritin of zero. Should you be in an accident or have anything happen that causes you to lose blood - your risk of death goes up when you have no available stores.

Despite all of this - I was still left with few treatment options. I was in and out of the ER requiring IV fluids and electrolytes to maintain my dreadfully low blood pressure. They would often bring in medical students to look at my vitals because they ‘couldn’t believe’ I was still conscious. I felt like a performing monkey - asked to stand up so they could see how drastic my orthostatic vitals were - but never actually provided with treatment that could IMPROVE the situation. All I was ever given were bandaids. It turns out I had POTS (Postural Orthostatic Tachycardia Syndrome) that was missed every single time.

At this point I’m basically living in the ER and/or or the hospital - having surgery after surgery and not getting any better. It was still the early days of the internet so finding good information on endometriosis treatment was difficult - and all I could really do was trust that the doctors knew what they were doing (spoiler alert - they didn’t).

I finally found an expert in a larger city a few hours from my home and went to see him - and he confirmed that my case was severe and required a type of surgery I wasn’t being offered. Excision is the gold standard for endometriosis and involves cutting out the disease to ensure none is left behind. I was being given ablation - which involves using a laser to burn off the top layer of disease. It’s known for leaving lesions behind which cause the condition to spread - as well as creating a lot of scar tissue that could be avoided with a more refined technique.

Unfortunately for me - this doctor only performed surgeries for women who were trying to get pregnant and therefore refused to operate on me. This was my first glaring example of misogyny in medicine. I was sick and in desperate need of help - but he only saw value in removing the endometriosis if it was a barrier to conception. If it was simply to give me back some semblance of a quality of life? He was uninterested. I didn’t want to get pregnant given I was too sick to work or perform basic activities of daily living - so I was once again sent on my way with no change in treatment.

Image Description: An artistic drawing in black on a light pink background. It shows a woman with long wavy dark hair sitting among a few thorny and leafy vines. She is curled in a ball with her face covered by her hands, knees and hair.

The Hysterectomy

A few months later I had the worst period of my life. I will avoid the gory details but within 24 hours I knew something was dreadfully wrong. Compared to my normal awful periods - this was on another level. I went to the ER where it quickly became apparent that I was haemorrhaging and required an emergency hysterectomy. No one asked WHY this was happening in a 24 year old - my uterus was rupturing and no one seemed interested in the reason. Due to my non-existent ferritin my body couldn’t keep up with the blood loss and I required multiple rounds of blood transfusions and platelets during surgery.

When I woke up - I felt like Superwoman. Despite having a major operation my pain was better than when I went in. The blood transfusions meant I had a normal hemoglobin for the first time in years and I could feel the difference. Given I was ‘young and otherwise healthy’ (or so they thought) they believed I could be discharged the very next day.

Unfortunately - things started to go sideways. My vitals weren’t improving, my hemoglobin was falling again, I was losing energy and becoming listless. My one day hospital stay quickly turned into five days… each day getting progressively worse.

I had endured enough surgeries in my life to know that if you’re healing properly - each day you get a little better. Increasing pain, fatigue and generalized sickness is NOT a good sign. I asked the doctors and nurses why I wasn’t improving and was dismissed every time. They treated me as though my expectations for healing were unrealistic or that I had a low threshold for pain and was simply being ‘whiny’.

Day five post op and I was still in the hospital - relying on a catheter to pee and IV fluids to keep my blood pressure up. My hemoglobin was close to pre-hysterectomy levels. It was a Friday and my surgeon was scheduled to go away for a long weekend. She came into my room and told me I had stayed long enough and that as long as I could pee when they removed the catheter - I would be going home. I asked her why my blood pressure and lab work were getting worse and she shrugged and said I just needed to give my body more time to heal.

Keep in mind I’m 24 - I’ve just lost my uterus and with it my ability to bear children - and I’m on a high dose of pain medication. I didn’t know how to advocate for myself. I didn’t know how to push back. So I packed up and went home despite knowing in my bones that something was wrong.

Being Discharged and Subsequent Visits to the ER

The next two weeks were the toughest of my life. I was fortunate enough to have my then boyfriend and coworkers coming each day to check on me and help me with household tasks… but I felt absolutely dreadful. My swelling was increasing every day, I had no appetite, I had increasing pain and absolutely no energy. In my previous surgeries I was off all pain meds by day five (if not sooner)… but this time I was needing increasingly strong doses. I wasn’t even able to update my social media to let people know the surgery went ok because I was too exhausted to type.

After a few days of this - my boyfriend took me to the ER. They checked my temperature, blood pressure and heart rate but ran NO other tests before sending us home. They were condescending and dismissive… saying “you just had major surgery you shouldn’t expect to feel well.” We had barely been dating six months and he was only 22 years old - he didn’t know how to advocate. He had no previous experience in hospital settings - so he took them at their word and brought me home to ‘heal.’

Unfortunately - and predictably - I continued to decline. I was no longer eating and I was sleeping round the clock. I needed to be carried to and from the bathroom. He took me back to the ER two more times and the same thing happened. Basic vitals were checked but no one ran lab work or did so much as an ultrasound before we were accused of attention seeking or drug seeking and sent home.

Two weeks passed during which time we went to the ER, were dismissed and sent home. Two weeks of me getting so sick that my friends genuinely feared for my life. Finally my boyfriend reached HIS breaking point after finding me unconscious on the bathroom floor. He would later tell me that he was certain if he didn’t get me immediate medical attention - I would die.

By this point I didn’t want to go to the ER. I couldn’t fathom spending another twelve hours in an uncomfortable waiting room chair only to be inevitably dismissed again. I just wanted to stay in my bed - and I don’t think I understood that staying home might lead to my death.

My boyfriend called a coworker to drive us so he could carry me and keep me steady in the car. I passed out en route and he carried me into the ER - unconscious - for our fourth and final visit. I came to when we reached triage - but they still dismissed us. Looking back I can’t believe we kept our cool for us as long as we did - but we were young and they were the ‘experts’. We hadn’t yet learned how common medical mistakes were. They asked us why we were back. They told my boyfriend that they had been clear that we shouldn’t expect treatment as nothing was wrong and we needed to be ‘patient.’

He demanded they run tests and they pointed to the blood pressure, temperature and heart rate. It’s worth noting that my blood pressure was low (80/50) and while I did have a fever - it wasn’t as high as you would expect if someone had a serious post operative complication.

They once again were making it clear they were going to send us home with no help - so my boyfriend blocked the door and said he was NOT taking me home until they ran additional tests. He had to use his large physical presence to get attention - he got loud and said “if I take her home she’s going to die.” They threatened to call security but he held his ground and said they could call whoever they wanted - we weren’t leaving without tests.

This tactic may not be safe for everyone. We were fortunate that this occurred in Canada and that he was white… the situation never escalated to physical violence. It absolutely could have and I’m grateful every day that it didn’t. They did threaten to call the police for ‘trespassing’ but he sternly told them that if they did that he would tell the police that they had been refusing me even the most basic of tests.

Thankfully - a doctor overheard the exchange and finally came to see me. At this point we had only seen nurses and security guards. This doctor took one look at me - pale, sweaty, breathless and curled up in the fetal position - and immediately ordered an ultrasound and extensive lab work.

Image Description: An artistic drawing featuring a sketch of a partial woman’s face with runny splotches of vibrant colours around the edges.

As soon as the ultrasound and blood work came back I was being injected with high doses of IV antibiotics, pain medication and rushed for a CT scan. I had a flurry of doctors and nurses around me and most looked panicked. It turns out they saw a large shadow on the scan that indicated either a perforated bowel or abscess and my blood work showed I had a life threatening infection and needed another round of blood transfusions.

It had become so serious that the hospital we were at couldn’t even treat me - and I had to be transported to a larger hospital nearby. My boyfriend left to contact my family and make sure things were ready for me at the other hospital. I don’t remember much of that time - but what I can recall through the haze of pain, exhaustion, fear and medications - was a doctor telling me I only have a 50% chance of survival and a very kind stranger. There was an older woman who was at the ER with her husband who approached me and asked if she could hold my hand. Normally I would think this odd - but it felt comforting. I lost my Mom when I was 19 and in my haze it felt like she was watching over me.

The Second Surgery

When I got to the other hospital the surgeon was waiting for me and I was rushed into the OR.

When I woke up in recovery - I instantly felt better. It was a night and day difference compared to how I felt before surgery. The pain was significantly improved and I felt clearer headed despite just having a major operation. It turns out my original surgeon had missed cauterizing an artery - which had been bleeding into my belly since the first operation three weeks prior. An abscess had formed to try and contain the bleed and it had become infected.

They were able to remove the entire abscess, fix the artery and wash out my abdomen to reduce the risk of the infection spreading - but I still had to spend a number of weeks on IV antibiotics and it took me eleven months to heal. I lost nearly a year of my life, my ability to bear children and my faith in medical staff all because a number of healthcare workers decided they knew my body better than me.

I’ve had nearly twenty years to reflect upon this experience - and with hindsight it’s easier to see all the ways things went wrong. For example - my extremely heavy periods were never properly investigated or managed. When I hemorrhaged - no one bothered trying to figure out why. It turns out I have the vascular subtype of Ehlers Danlos Syndrome - the most severe form of the disease. Had we known this my surgery would have been handled more delicately. We would have been more prepared for the possibility of a catastrophic bleed.

I also have Dysautonomia - a condition which impacts the autonomic nervous system. That system controls all your subconscious processes. Things like blood pressure, heart rate, temperature and breathing. As a result my vitals didn’t respond the way one would ‘expect’ with such a severe infection and internal bleed.

This is why I say you should always know your baseline. Now that I’m armed with information about what is ‘normal’ for me - as well as what types of things my conditions can cause - I can more confidently advocate for myself.

The Aftermath

In the end - I’m incredibly grateful to still be alive. This story could have easily had a devastating ending. I think back to the boyfriend who advocated for me and the fact that he was only 22 years old with absolutely no medical or chronic illness experience. He could have believed the doctors and doubted me. He could have given up. He could have walked away. He certainly didn’t need to put himself on the line and risk potential arrest the way he did.

Thankfully he saw what so many healthcare workers apparently couldn’t see - he saw that something was dangerously wrong. With no medical experience or training he KNEW my life was on the line - which makes it all the more heartbreaking that we were ignored so many times. In all those visits to the ER my surgeon never once came down for a consult - they wouldn’t even deign to give me an OB-GYN resident. It was constant dismissal, gaslighting and ignorance and it nearly cost me my life.

The boyfriend and I aren’t together anymore - but we do stay in touch and this experience impacted him just as much as me. His view of the healthcare system and how women, people with disabilities, chronic illnesses or marginalized individuals are treated was forever changed. We both carry scars and trauma from what happened - and they will probably never go away.

I’m a far better advocate for myself now than I was back then - and I would imagine he is as well. That being said you should never have to risk potential arrest to get needed medical care. You shouldn’t need a man to ensure you aren’t sent home to die. You shouldn’t have to go to the ER four times with a life threatening post operative complication. The system failed us every step of the way - as it fails so many people each and every day. Not all of them will have a happy ending.

We must do better. It’s taken two decades for me to share this experience because I find it hard to relive - but it’s a story that needs to be told. So many people will die due to medical errors and negligence and never be able to tell their stories. Many have stories similar to mine and don’t have a platform to share them.

These types of events are not nearly as isolated as we would like to believe - it’s a systemic problem that needs to be called out so it can be addressed. I’m thankful to everyone who shares their stories, who encourage others to speak out and who I know will stand by me for sharing this one.

Never let anyone tell you you’re wrong about what’s happening in your body. You are the expert and must trust your gut. I hope this story and the other articles in my series will help people learn how to advocate for themselves, how to advocate for others and provide them the courage to do so even when the deck is stacked against them.

This post is public - please share with anyone you think could benefit from learning about advocacy in healthcare settings.

Have you had a dangerous healthcare experience? Were you disbelieved or mistreated? Please feel free to leave a comment below - I believe that the more we share our stories and discuss what works and what doesn’t - the safer we will all be.

The Disabled Ginger

Discussion about this post