My Endo journey

By Mila

Many people who know me are already aware of the debilitating and chronic disease that I suffer from daily. I feel connection is how we can advocate towards greater awareness. Thus, I hope in reading this, although you may personally not be able to relate, it will help you gain an insight or understanding into what 1 in 10 women* in New Zealand suffer from. Every journey and experience is unique in its own way, and this is just a glimpse into what I have been dealing with for the past seven years.

All throughout high school my menstrual cycle was irregular and my periods were always painful. The excruciating pain I would feel or fear of the pain itself deferred me from school, attending social events, and caused me to fall out of love with many of my hobbies. The pain of my pre, during, and post menstrual cycle became so severe, basic over the counter remedies could no longer diminish my symptoms.

After being referred to a doctor by naturopath, I was then told “this pain is normal with menstrual cycles.” To hear the physical pain affecting almost every area of my life was only “normal” was extremely confronting. Around this time, my journey shifted to not only being a monthly physical battle, but to a mental one as well. I became terrified of my period and in turn, terrified of myself. I did not understand why my body reacted this way to my menstrual cycle. I felt extremely lonely and isolated. Reflecting back on this now, I know I was not alone.

After several months of this back and forth debate, my quality of life had severely dropped. More often than not it was the mental side that convinced me to stay in bed rather than the physical pain I was becoming so accustomed too. My family and I decided to see gynaecologist in hopes for some legitimate answers. Upon first meeting, I was penciled in for an immediate surgery. I was told my symptoms matched with endometrial symptoms. Although I felt initial relief to finally have some direction, I still felt extremely scared and somewhat doubtful.

A month later, I underwent a laparoscopic surgery where I was diagnosed with severe stage 2 endometriosis at age 18, with insertion of a mirena. However, after a couple months of physical recovery, my symptoms from pre surgery began to ramp up again and I was then additionally prescribed with a birth control pill in hopes to manage the pain. Yet, in spite of that, I experienced many severe birth control side effects. My appetite became infrequent due to often feeling nauseous. This created a cycle of not eating and subsequently losing an extensive amount of weight. I was advised to see a dietitian and clinical psychologist to help guide me through my developed eating disorder. I tried the Low FODMAP diet to try identify my food triggers and went through 6 weeks of exposure therapy to help with my fear of nausea and vomiting. Although my typical “period” symptoms were now lower, all the consequential side effects began to drastically take over. After a year of perseverance, my gynaecologist introduced me to a new medication called Zoladex; essentially shutting down my ovaries so I would no longer experience a menstrual cycle.

At this point, I had just completed my first year of university and my first year away from home. I was desperate for some form for normality. I began a three months trial of monthly injections into my stomach, requiring a local anesthesia and a daily hormone pill of proygnova, stopping my body from undergoing menopausal symptoms whilst my ovaries were shut down. This monthly process was mentally draining, I would dread every hospital visit, and yet I was still willing to try anything. Following an initial success with the treatment trial, I was put on a higher dose of zoladex and switched to a three monthly cycle. This did reduce my daily symptoms and endometrial pain.

Unfortunately, towards the end of 2024, the treatment began to fail. I had gained significant weight, causing body dysmorphia, heightened anxiety, and I began regularly bleeding again. I felt utterly defeated. After two years of intense treatments and medication I was still suffering with the pain of endometriosis, and battling various residual physical and mental battles. The decision was made to take me off the zoladex treatment and I am now trailing pain with just my Mirena. Today, I have become a lot happier but physically, my pain remains constant and excruciating at times. This is just a slight insight into my journey with endometriosis. By sharing my story, I hope to shed light on the reality of this disease, and let others know that they are not alone.

* 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.