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Since 14, I thought periods must give everyone hell…9 years later I was diagnosed with Endometriosis

Hey I’m Katie, I am 23 years old and live in New Zealand. I am here to open up (daunting!) and share my story about health and how my experience has helped me on a journey with self-love, acceptance and positive well-being. I am usually someone who prefers to deal with problems myself so this is a big step for me, however, it is a good step if it means sharing my story could help even ONE person. If I can help one person, then I feel as though my purpose is fulfilled.

I guess you can call me an ‘endo-warrior’- which is something I have finally learnt to accept. Some of you may never have heard of endometriosis but I can probably guarantee you know someone who deals with it every single day. Endometriosis is a common inflammatory disease estimated to affect 176 million girls and women worldwide in their reproductive years, and 120,000 in New Zealand. This means that roughly 1 in 10 women in New Zealand will have endometriosis. Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in places outside of the uterus e.g. in the stomach, in some cases in the brain and lungs. (Endometriosis New Zealand, 2020) The best way to explain is that the tissue/lining, wherever it may be present, sheds itself once a month like a period. However, it has nowhere to escape from and causes extreme inflammation. This can cause a wide variety of symptoms, more commonly; pain, abnormal bleeding, PMS. There is extremely limited research and information about endometriosis and exactly what causes it. Most women who have endometriosis do not find out until they are having trouble getting pregnant. I am passionate about raising awareness of this disease and educating both sufferers and health providers that peoples symptoms should not be overlooked or made to feel insignificant like how I was.

My endometriosis story really began at the start of 2019, when I began experiencing severe pain and abnormal bleeding. I was on the contraceptive pill at the time and had been since I was 14 due to heavy painful periods. For the last 9 years I thought this was normal and that periods gave everyone hell. I decided I had enough of the bleeding and maybe this pill was not working for my body anymore, so I wanted to change. I began going to the doctor about this and they carried out the usual tests but could find a conclusion. They told me that there was nothing wrong, my pill was perfectly normal to be on and sent me on my merry way. This routine continued for another 10 months with regular doctor visits at least once every month. I tried seeing different doctors but there was still no conclusion. Every time I would leave constantly feeling like I wasn’t listened to or that my problem was not significant enough to warrant further investigation. My bleeding began increasing, I felt extremely tired, easily irritated, my mental health was low, I couldn’t be bothered to go to the gym, work, to see friends. I spent more than $400 in doctors’ bills and numerous hours in different clinics. I started to feel as though everything was in my head. After 11 months, my doctor finally agreed to change my pill. I trialled another pill for three weeks and my bleeding increased to the point that it was no longer manageable. I tried to make another appointment with my doctor, however, they had nothing available for a week. I was recommended a free ‘youth’ doctor by a work colleague, to which I was sceptical. I decided I had no more time to lose and made an appointment the same day. I will never be able to thank this doctor enough for her help. After one free appointment, she completely understood how I was feeling and admitted me to have an ultrasound immediately. Their findings led to needing surgery and finally being diagnosed with endometriosis of the left ovary and an endometrial polyp.

After being diagnosed with endometriosis, I had a difficult time trying to process, digest and accept it. I was constantly anxious, wondering if I would ever be able to have my own family one day and wanting answers that simply didn’t exist. I was angry at the fact I had to go through this and I hated my body for constantly being unwell. I kept quiet to majority of people that I was going through this, due to its personal nature and not being able to express my feelings towards it. I was frustrated at the fact no one seemed to understand how it felt to go through this, what it meant to me and the impact it had on my happiness and wellbeing. I confided in some of my family, a very small handful of friends and my partner (whom I am all grateful for). There is a huge lack of information about endometriosis and any information there was scared the living crap out of me, making it hard not to assume the worst. I wish I knew that I was most definitely not alone….

My journey of self-love and acceptance derived from my experience with endometriosis. I learnt to accept that there was a reason behind all of this, even if it seemed like the world was just out to get me. It was to show myself that I am brave and I am capable of more than I have ever believed. I am now four weeks post my first surgery (while also dealing with a broken wrist which lead to surgery in a full plaster cast despite increased risks) and I feel truly grateful for my body giving me this experience. I am the healthiest I have ever felt and know how to take care of my mental and physical wellbeing. It has led me to grow, reflect, develop and be able to pass my knowledge on to help others.

We are all capable of feeling this way, whether it be related to health or general life. It is about learning to find positivity, even when it may seem really difficult. Surround yourself with positive people, who deeply care about your well-being and want to understand your journey. It is essential to address these difficult experiences and retrain our minds to see the struggles we encounter every day, as opportunities to grow in some small way. No matter what shows up in our path, we have the power to choose how we deal with it. Put trust in your soul, that it delivers exactly what is needed for you to achieve greatness either physically or mentally.

“A hero heals their own scars and then shows others how to do the same.”

– Katie x

Sources:
Endometriosis New Zealand . (2020). Retrieved from https://nzendo.org.nz/endo-information/

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