By Jess Kondys
Endometriosis is a disorder which causes tissue that normally lines the uterus to grow outside of the uterus. It is a chronic illness, which, for me, causes chronic pain. Endometriosis can only be definitively diagnosed through a laparoscopy, which is incredibly invasive day surgery. Endometriosis can present in a range of different symptoms. Personally, my list of symptoms is too long to list.
I have had a long and arduous journey with endometriosis. I was 11 when I got my period. My periods have always been painful, to the extent of having to take days off school. When I was 13 my doctor allowed me to try a contraceptive pill to attempt to make my periods less painful and more regular. I tried about eight different contraceptive pills by the time I was 15. Nothing helped. Some pills would give me severe depression, others would flat out not work. So, at 16 in 2015, I went to see a gynaecologist. He was very comforting and never made me feel uncomfortable. When I was 17, in 2016, my final year of school, it was time for my first laparoscopy. He would assess whether I had endometriosis and insert a Mirena or IUD to help regulate my periods.
After the laparoscopy, all suspicions were confirmed. It was official. I had endometriosis, severe, stage four endometriosis. I had so much endometriosis that my doctor could not remove it, it was too difficult for his abilities. Therefore, hormone treatment was the next step.
Menopause. At 17, in 2016 I went through temporary menopause in an attempt to stop the spreading of tissue. Term four of year 12 started, and so did my hot flushes and heightened mood swings. Once a month for six months, I would be injected with the hormones before school. My year 12 experience was riddled with half days and days off, but I did it. I graduated.
Just before I started university in 2017 it was decided that this hormone treatment was not working, and it was time to move on. My gynaecologist could do no more for me and it was time to move onto someone with more knowledge and experience. I was referred to a specialist, a professor of endometriosis. He decided it was time to stop the hormones and see what my body did. Towards the end of my six-month hormone treatment, my pain had come back and taking me off the hormones did nothing to help. I was in excruciating pain most days whilst still trying to get through my first semester of university. It helped that I had a disability plan, but even my disability plan didn’t help what came next. My new doctor decided that I was to go into surgery immediately so he could determine how far the tissue had spread.
I had to defer from my first semester of university. My endometriosis was incredibly severe at this point. Layers of skin had to be peeled from my organs to remove the tissue. My doctor also found that the disease had wrapped itself around my bowel and caused a blockage. This meant that instead of a 4-week recovery, I now had a 6-week recovery from surgery followed by 3 years for my bowel to recover. I only did one unit of study in second semester as I was still recovering. In 2018 I was back on track with my study and excited to get my life back on track too. I went back to full-time study. However, I had to defer again just before my final assessments to deal with a burst ovarian cyst. After another 4 weeks recovery due to infection and complications, I only did 2 units of study in the second semester, just in case another medical emergency decided to burst into my life.
Now, in 2019, I have almost finished my first full semester of university. I have an overseas trip planned for the semester break. I am so excited, yet, another thing has arisen. My Mirena is failing and so another treatment will have to be decided on. This disorder is debilitating, at times if feels life-destroying. I have had to battle depression, anxiety and PTSD because of this disorder. I still have pain, it is less, but it is still there. I will be 20 years old in a couple of months and it has taken me years and multiple healthcare professionals to be able to be the confident woman I am today without living in fear of pain, my pain.
I am not the only one. 1 in 10 women are affected by this disorder, there is no cure. That’s what sucks.