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How I was diagnosed with Deep Infiltrating Endometriosis

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Category: Delayed Diagnosis, Diet, Impact on Quality of Life, Multiple Symptoms, Public Health, and Teen Symptoms.

Before I got sick I was an elite gymnast. This is how I went from representing my country to barely being able to get out of bed.

I first got my period when I was 12 years old. I actually experienced cramps for a solid 4 months before I bleed for the first time. Ever since I first got my period the pains have been awful. I would get migraines, bowel issues, and heavy flows straight from the start.

Over the years the pains got worse until one day I was floored with the most intense abdominal pain I have ever experienced. It was 2am and I screamed for my mum who took me to the hospital. Hours later I had an ultrasound and the doctor told me I was fine and would never experience those pains again. The next day at the GP I was told I had multiple cysts on my ovaries and was sent to a Gynecologist. The Gyno laughed at me and told me I was too young to have endometriosis and put me on the mini pill to help with my period symptoms. It was the most uncomfortable experience of my life up until that point.

Over the years I experienced reoccurring severe pains both on and off my period. The pains would hit me randomly and no matter where I was I would hit the floor crying in pain. Every time I was taken to the hospital and would wait for hours only to be told that I was “fine” and “would never experience it again”. During this time I came off the pill as I thought maybe I was having a reaction to it.

In 2020, I got really sick. It was mid way through quarantine and I had been treating an ear infection I had gotten a few days ago. I stood up and proceeded to throw up and pass out. Countless trips to the GP and multiple diagnosis later and nothing had changed. I could barely stand I was so tired, the world was constantly spinning, and everything hurt so much. A gluten free diet helped temporarily but then it got worse again.

By early 2021 I was tired, sick, and tired of being sick. I was lucky to have a good GP who was pushing for me to have a diagnostic laparoscopy. I had two ultrasounds which had shown cysts on both ovaries that were getting bigger. In March, I finally had a pre-admit appointment and then…nothing. I heard no communication for 3 months. In June I finally had a date, 19th of July. Then 3 days later I was sent a letter saying it had been postponed to the 23rd of August. At this point I gave up and booked an appointment with a private care specialist.

My appointment with a private care specialist was a turning point. He performed an internal ultrasound and within seconds diagnosed me with Deep Infiltrating Endometriosis w/ a frozen pelvis. My pouch of douglas was obliterated, my pelvic organs were fused together, and endometriosis most likely ravaged my body but I was relieved. I broke down in tears and just said “I’m not crazy.”.

Currently I am waiting on surgery which has been postponed again to the 28th of September. I’m trying to manage the disease as best as I can but right now its just playing the waiting game. I’m still not sure the extent of my endometriosis and wont know until my surgery. I work and study a total of 50 hours a week which is difficult. I still struggle with anxiety and depression and all the symptoms associated with Stage 4 Endometriosis but at least now I have some hope of one day feeling like a normal person.

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