An ongoing war with my body, mind and the system

By Courtney

I started just like everyone else, pain during my periods that just got worse and worse as I got older. It wasn't until I collapsed in pain at work and had to walk (crawl) to an emergency doctor's it was then that I knew this pain wasn't normal. I was dismissed at that doctor's and went to the hospital after to find it was a cyst rupture, this is where my fight began. I'm lucky it was only a 4 year wait before I had my first surgery, during those 4 years as many of you know I met many doctor's during hospital visits or on the gyno teams who would tell me my symptoms aren't severe enough to be endo or that my symptoms are just my body adjusting to growing up. I knew better, I knew spending days in bed because the pain is unbearable isn't normal, I knew having to wear a tampon and pad then still bleeding through isn't normal, I knew my daily pain was more than this. I woke up from my surgery to learn that I have stage 4 endo and they had burned off as much as they could but had left some on my bowel. I was so relieved and angry in that moment, relieved that there was a name to what I experience, angry at all the doctors who had let me down and angry that they left some. It was a wave of emotions that still roll around years later. I wish that was the end, I read that some women don't need another surgery for many many years after and their symptoms become manageable but as the months go by I realise I will not be one of those women. Only 8 months later I'm back in hospital with complications related to chronic constipation which required 2 surgeries and endless hospital ed visits, then the vomiting started I couldn't keep food down for months after having a paralytic ileus that we suspect either didn't heal properly or was a symptom of the chronic constipation. I went through every test and multiple teams at the hospital trying to figure out what was causing this... I knew, I had been telling them from the beginning, can you guess? A year goes by and so so many hospital visits, I spent my first anniversary in hospital and my 25th birthday. The crippling reality that this is my life now is starting to hit, I'm only young but I am missing out on almost every aspect that a person my age should be able to do. My daily pain means I can't work or go out to see friends, I miss important events, I can't do to many chores during my day otherwise I flair. I have to choose what is worth the pain.

For the most part I have been able to keep a positive outlook on my situation, I have many things to be grateful for especially my partner who has been so unbelievably amazing through this but there is a constant looming anger and sadness, I'm sure far too many of you understand this and I am so so sorry. I gaslight myself into believing it's not that bad just like the doctors keep telling me, I hate my body for what it is doing to me, i hate the system for failing me again and again, I'm sad for the strain it has put on my relationships but most of all i grieve the life that I should have and the reality that I will never have it.

I have now tried every medication possible including medical menopause, I have seen every specialist available, they won't preform another surgery to remove the endo/scar tissue because it's only been 2 years since my last surgery. I am on a wait list to try Botox in my pelvic floor to help alleviate the hypertense pelvic floor that comes with chronic pain in the area due to endo. I have begged and cried to so many doctors to help me and so many have stood there watching me break down and told me "we wont" and I can't tell you the level of heartbreak I feel every time. I am constantly at war with myself, my body and our medical system this is how I survive now. All I want is to live, just like everyone else.

* These are the words of the author. At Endo Warriors Aotearoa, we recognise that endometriosis can affect people of all genders — including trans, non-binary, intersex, and gender-diverse individuals. Our work and community are inclusive of everyone who lives with endometriosis.