I first developed signs of endometriosis at the age of 14. Entering my teenage years, I had never heard of endometriosis. I had merely learnt about the basics of having a period, heard that it could be accompanied by mild cramps, but not once did I ever comprehend that from that point on, I would be spending the rest of my life living with an incurable disease.
I underwent my first laparoscopic procedure in April 2011at 15 years old, where I had the confirmed diagnosis of stage 3 Endometriosis which shocked everyone, including my gynecologist at the time. Since then,I have undergone 14 laparoscopic procedures for the deep excision and removal of stage 4 severe endometriosis. I had my right ovary removed due to the extent of the damage endometriosis had caused over the years, including multiple cysts and ovarian fibromas.
When I first tell people, including medical professionals that I have had so many surgeries for endometriosis they are stunned because I am so young and saddened that I have had to go through this, but to be honest I consider myself one of the lucky ones. I have an amazing support system, and a knowledgeable and caring specialist.
It takes the average person seven years to be diagnosed and treated for endometriosis. In seven years the damage can be so severe from the scarring that people struggling with infertility may not even be aware that it is due to endometriosis.
My diagnosis came around 12 months after my first period.
Having endometriosis is awful but in retrospect, I am lucky, because my diagnosis came within 12 months of my first period. My mum was a highly skilled IVF nurse, an amazing mother, support and advocate, who had been diagnosed with endometriosis herself. I was lucky that she recognised the symptoms almost immediately and was able to connect me to the right specialist that had also previously operated on her.
12 years into living with Endometriosis, I spend my days living with chronic, intense pain. Doctors have discovered endometriosis around my uterus, pelvic walls, bladder, bowel, kidney, ovaries, fallopian tubes, urethra, pouch of Douglas, lower nerves surrounding my spinal cord and most recently, my diaphragm. This causes me to not only suffer from pelvic pain but chronic pain throughout my entire body.
In the last 12 years I truthfully could not identify a minute in a day where I wasn’t in some type of pain. For what has become my “normal” would render others to the emergency department or concerned that an organ has ruptured. I am in constant discomfort. No matter if I am standing, sitting, walking, laying, running or curled up, the feeling is there.
This full body pain, depending on the severity it can either be a slight discomfort where it is normal enough for me that I can get on with my day, but I can feel it there lingering, or it can be severe enough that I am sobbing on the floor and feeling like I am completely alone in the world.
A severe endometriosis flare can feel like having your appendix burst a thousand times over.
A severe endometriosis flare can feel like having your appendix burst a thousand times over (which unfortunately is also something that has happened to me so I can make the comparison).
Endometriosis can often come with other diagnosis, for me it has included painful bladder syndrome, fibromyalgia and even the detection of a tumour on my right ovary last year which resulted in a unilateral salpingo-oophorectomy (removal of right ovary and fallopian tube).
Whilst I know my journey with endometriosis is far from over, I hope to one day be a mother. With research and foundations such as The Endometriosis Foundation, we are one step closer every day.