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My Endometriosis Surgery Story: And not the good kind

Updated: Mar 25, 2023

28th of February 2020, I underwent a surgery that almost took my life with it. This surgery was a laparoscopy & hysteroscopy for the excision and removal of Endometriosis. Upon looking inside my surgeon someone I thought I could trust with this so desperately needed surgery realised just how extensive my endometriosis truly was.

My surgeon didn’t take the time and rushed my surgery. I ended up waking in agony, screaming my lungs out and unable to get the pain under control for a good lump of time. I was told by nurses I would shortly be greeted by my surgeon who would explain what he found, what he did etc. I then proceeded to wait as he never came.

After waiting in agony for what felt like an eternity, a nurse finally came over, only to tell me that he was too busy. The pain was excruciating, and I desperately needed adequate pain relief. When I was finally given a prescription for pain medication, it was not enough to manage my pain, and I was afraid to use it all up too quickly. But with this I was pushed out the door and sent on my merry way. Despite my reservations, I had no choice but to take the medication as the pain was unbearable, and my high pain tolerance was no match for it. Unfortunately, the pain medication worsened my insomnia, leaving me unable to sleep that night when I so desperately needed rest.

As the night progressed, the pain continued to intensify and by the time morning arrived, I had an unsettling feeling that something was off. Despite being a bit of an optimist, I couldn't shake off the nagging suspicion that everything was infact not okay. Unfortunately, my suspicion turned out to be true - something was very, very wrong.

My stomach began to swell rapidly, to the point where it seemed like I could have been carrying a baby inside of me. The pain was excruciating as my stomach continued to grow, and what was once a flat stomach was now resting on my legs. Although I knew deep down that something was seriously wrong, as to not cause a disturbance I tried to downplay it and convince myself that it was just a side effect of the surgery and that it would eventually improve. I continued trying to tough it out throughout the day.

The situation did not get better and instead began deteriorating rapidly. By evening, my stitches were on the verge of bursting, strained to their limits and now bleeding quiet heavily. It was now becoming very clear that I needed urgent medical attention and that indeed something was very, very wrong.

I knew that I couldn't wait any longer and that I needed to get to the hospital as soon as possible. It was a very difficult journey to the hospital, I barely even made it in there and by the time we arrived it was the middle of the night.

I wasn’t cared for well in the emergency department because it can’t be that bad?? seeing as I’ve just had a complex laparoscopy right??? I got treated as if the pain I was in was unjustified. I had some scans done and turns out I had quiet serious internal bleeding from multiple sites in my abdomen.. Explains why I literally felt like I could drop dead any moment, because I just about had no blood left pumping around in my little body. I felt as if I’d go unconscious and never wake up again. At some point during the night I got a blood transfusion and I spent the whole night screaming until finally the surgical team could get contacted and before I knew it within the span of 30 minutes of being told I’m having another operation I was then under anaesthesia yet again.

I wake up and I’ve now got another hole in me and a drain tube coming out of me that is pictured here, I called it “my margarita” Pretty gross I know haha. Anyways this was to help drain any remaining blood from inside of me. The pain I was in after now undergoing the two surgeries and the internal bleeding was just through the roof and my body was giving out.

I was treated so horribly by everyone and copped all sorts of abuse; I was treated like I was a psychiatric patient. My body couldn’t do it anymore and it gave out. This is when I started experiencing seizures. The most painful thing in my entire life. No one would help me, no one would do anything except for stare at me, make remarks and abuse me. The people who in your time of need are meant to help you did everything but that to me.

“Yep, be back in a minute” theyd say, but they wouldn’t ever come. Never in time. I’d be trapped. Unable to speak, my body contorted and hard as stone, burning up, chipping my teeth, choking on my tongue, my heart beating just about out of my chest feeling like it would give out at any moment as the machines attached to me would go crazy, they eventually disconnected them after having what looked like 30 people rush to me, strip me naked and try save my life time and time again. I was desperately trying to fight with anything I had left while copping the worst abuse I’ve ever experienced in my life.

These photos below were taken as medical evidence while I was left helpless and neglected by the hospital staff. Despite the desperate pleas and tireless efforts from my parents to get me the medical attention I needed, I endured gross neglect and mistreatment, and experienced extreme malpractice at the hands of the hospital staff. During visiting hours, they along with my partner tried to counter my spasms and seek assistance, but were confronted when attempting to document the situation. The fact that they were prevented from documenting only adds to the injustice and lack of accountability demonstrated by the hospital staff and other so called "professionals."

Finally after days of fighting my own body I met an anaesthetist who specialises in pain. She was lovely and the first person who treated me like a human. She could see I was conscious and could see all the fight I was putting up. She spoke to me as I was seizing and could see I was already doing everything she would of told me to do to fight through it. She told me it was going to be okay and she held my hand as she told me the plan and showed me the way forward.

She found a medication that worked and that would be safe enough for me to stay on long term to get the seizures under control. I wouldn’t of made it without her. Every day I’m so grateful she came along just in time.

Me taking a picture to see how noticeable my new lazy eye is following my seizures.

Now to leave that hell hole I had to even undergo a phsych evaluation just for them to let me leave. Safe to say I finally got out of the hospital, but the battle wasn’t over yet.

Just because I wasn’t seizing anymore doesn’t mean I wasn’t still having to fight with everything I had. I still hadn’t slept, the pain was unreal and what’s even worse is I couldn’t sit down or lay down and rest because of it. The following nights I spent cutting laps around the house with my eyes closed and this was the closest thing I could get to rest. I’d constantly be trying to stretch out my muscles which felt like stone and were causing incredible pain that I can’t even bring words to. This was miserable but I was just so very grateful to be out of that hospital alive.

My stomach after leaving the hospital 6/3/2020

I still don’t know the exact cause of my seizures but I know what situation is likely to cause them, which is when my body is in way too much pain, experiencing too much trauma etc. It is quiet daunting when you deal with very high pain levels quiet regularly. It doesn’t take much to be put over the edge.

I’ve experienced them a few times since being out of hospital again and it’s always a very traumatic thing, not just for me but those around me as I become helpless. The medication I was taking to keep them under control became ineffective, it just didn’t seem to be doing the job it previously had and I’ve ended up in hospital many times once again because of this. I have to live with this to this day and I don’t know when they will stop or if they ever will but I’m trying my best not to trigger them but some things are out of my hands.

I’ve shared this story to show some of the medical trauma we can go through as women suffering with endometriosis or any invisible illness for that matter in a system that makes far too much profit off of our illness and keeping us sick. It can be quiet daunting to speak up, to become vulnerable and share. I’m hoping that with my actions I can encourage other to do the same and that one day we get the awareness we deserve!

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