The Difficult Journey to Diagnosis

The Difficult Journey to Diagnosis

Hello, my name is Amanda Niebergall and I am 32-year-old stage four Cervical Cancer survivor.  Whether I was ready for it or not this label has becoming such a defining aspect of who I am today. My healthcare journey towards getting to this diagnosis had been long and difficult, but I`m fortunate that due to the quick action of some doctors I met, today I am currently NED.  I am hoping that in sharing my difficult story, I can make someone else’s better, and in the very least let them know they are not alone and there is hope in this terrible disease.

Part 1: The Difficult Journey to Diagnosis

The road between my initial symptoms and later diagnosis was long and bumpy. I was often felt discouraged and not heard when talking to my providers about my symptoms. From 2013-17, I knew something was very wrong with me and I was struggling to find answers. My periods were very painful and I never felt healthy. I was prescribed numerous different pain pills and birth control, told to take iron and to change my diet. Nothing helped. I was constantly on prescriptions for bladder infections and UTI’s. I underwent pap exams, blood work, urine analysis. Although I was proactive in trying to identify the problem with my health, it was difficult to get clear answers. In part, I think I was never taken very seriously because of my age and some early assumptions about my outward health that were thought to be genetic because I shared a family doctor with my mother. In all this gynecological drama, I’m sad to report that none of my providers mentioned HPV testing, or the vaccination.  So after four years of feeling down right terrible, I advocated for myself. Enough was enough. In October 2017, I went back to my GP and convinced them that I needed an ultrasound, but before this I ended up in the Emergency Room because of constant heavy bleeding. After waking up covered in blood my partner and I decided this was definitely not normal and went to the ER.

Part 2: The Missed Opportunity

And here I think there was a missed opportunity for the system to connect the dots , that would have made my journey easier:
In the ER, I was given a pap test, blood work and urine analysis. While I was in there I was asked repeatedly by different nurses and doctors if I was having a miscarriage, I told them I didn’t think so. I was on birth control and if that was the case wouldn’t there be something in my blood work or something that would tell them that. I told them I was getting an ultrasound the next week; I was discharged without a full battery of tests. I had the ultrasound and went to follow up with my GP. They were away so I went to the attending doctor in the office. They opened up my results from the hospital and we went over them. They told me that everything from the hospital had come back normal and okay, and that my ultrasound was normal and not showing anything abnormal either. So again, I was given pain pills and new birth control and put into a pool to meet with the next available gyno-specialist. I would later learn after obtaining my medical records that the pap exam results had come back inconclusive. So, I know that patients don’t necessarily get the full clinical picture, but two things: how can you tell someone everything is okay when you don’t have conclusive tests and why wasn’t I sent right then and there for more testing? Later after doing my own research I would find that I checked off every symptom for cervical cancer, and was never tested for this. So for now, my downward health spiral continued, and daily life was challenging. I was in school full-time for Early Childhood Education Certificate and was working as a waitress more than 30 hours a week.

I look back and wonder how I got through this time:
I was so weak and constantly in pain. I was getting in trouble at both work and school for being sick all the time which in turn began to take a toll on my mental health. It was hard to feel I wasn`t over-exaggerating my pain and symptoms, when I was getting no answers and felt like no one was taking my health concerns seriously. It led me to question myself, and my underlying gut feeling that something was wrong.

But life moves on:
I completed my Certificate in Early Childhood Education in January 2018, and then in February I started my dream job new job as an Associate Pre-School Teacher at a non-profit preschool. Then months later from when I got put in the waiting pool I finally got an appointment with a specialist in March 2018.

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