Shannon's Endometriosis Journey

By Shannon Rea

By the age of 17 I had spent most my life in hospital. I first had SVT - supraventricular tachycardia and had to have a heart ablation. Then at age 17 I developed a rare liver disease which saw me put into palliative care and nearly die. After recovering I started to notice how sore my periods were (the pain from them was always shadowed with my other health issues)...I went to the doctor and they said the sore periods was probably a result of my past medical history and hopefully over time they just get better....They didn't...I ended up at age 18 going to a gynecologist, my mum had done research and said my symptoms sounded like endometriosis so we asked the specialist. He said " You don't have endometriosis, you are too young. Only people who have had babies would have endometriosis. You'd have to be at least in your 30s."

My mum kept pushing saying "what else could it be then/?" and that me being in that much pain is not normal. He said "It's probably just a low tolerance for pain but look if you want me to do a laparoscopy then I will do it but you will have to pay." My mum agreed. $10,000 later I woke up in the hospital and my specialist came to see me...I looked at him and said "Do I have it"? He said " Yes, you do it is all through your bowels, on your ovaries and pelvis, I have removed what I can" and just like that he left. One week before my 19th birthday I had just been given a life sentence of Endometriosis, which I knew nothing about...

The next few years were the worst. I had to navigate my life while dealing with Endo. To make it worse due to my past liver issues no doctor would give me pain relief or the pill to try and help me. As a result of that I have severe burns on my back which are permanent as a result of self pain management (see photo). As a result of all that I was diagnosed with clinical depression and anxiety, I still struggle with depression and anxiety today but am getting better at managing them through support. I am 27 now and have had had 4 laparoscopies. I have also recently found out I am pre menopausal as a result of endometriosis, another hard realisation. My partner and I are currently doing IVF for embryo freezing before I hit menopause to try and give us a chance of having kids. We have had one unsuccessful round at $8,000 a pop so far....we have 2 more coming up. It's not an easy process.

I am so angry that my life at 27 revolves around hospitals, severe pain at least once a month, and often throughout each month, and putting myself into debt to try to have children; something that for some can come so easily. However, I have found peace through helping others with endo and raising as much awareness as I can through whichever way I can. I am proudly a qualified counsellor and am in my final semester of a degree in human services, working part time. I also hope to start my masters degree in mental health in April. Endometriosis is hard and everyone has their own story but no matter who you are one thing remains the are never alone.

You can follow Shannon's endometriosis journey on Instagram here