My Journey with Endometriosis

About the Author: Anna is an endometriosis sufferer and advocate, who shares her vulnerable story with the world in order to spread awareness and acceptance. She tells her journey with endometriosis and how she navigates her marriage and being a mother while trying to manage her chronic pain. You can hear more about Anna and her family's journey on her instagram (@battlewithendo_ox). 

For the past 12 years I have suffered with chronic pain which later I found out was due to Stage 4 Widespread Endometriosis (Endometriosis is a disease where cells like the ones in the lining of the womb are found elsewhere in the body causing debilitating and chronic pain). From the age of 14-17 I wasn’t being listened to by medical professionals. It took a misdiagnosis and an emergency appendectomy surgery for them to finally take my pain seriously. My general surgeon who took my appendix out could see Endometriosis surrounding the organ, and so he referred me back to my previous Gynaecologist, but she refused to agree with his findings. I was very fortunate that my Dad had private medical insurance, because he was able to take me to see one of the top Endometriosis surgeons in the UK. 

The surgeon did a diagnostic laparoscopy and found I was riddled with Endometriosis. I was finally officially diagnosed with Stage 4 widespread Endometriosis. I had so much disease they couldn’t remove it all in one surgery. That’s when they operated again 2 weeks later to excise the Endometriosis growing into my bowel, bladder, ovaries & tubes. That surgery took them five and a half hours, which included a bowel resection, catheter & a stomach drain. That was when my pain was finally validated, and for the first time I felt listened to. But at the same time, I was completely blind sided. I was 2 weeks away from my 18th birthday and had never even considered that I would be diagnosed with an incurable disease. You never think you are going to wake up one day and never be better, never be the same. 

Fast forward to April 2020, I am recovering from my 11th operation due to this thankless disease. I have just undergone major surgery to have a permanent ileostomy formed. This was done due to damage Endometriosis and scarring from previous surgery had done to my large bowel. I developed slow transit bowel disease where my large bowel completely stopped functioning. I was hospitalised every 4-6 weeks to receive treatment to try and partially clear my bowel. 

Before this surgery I lived day to day life in fear my bowel could perforate at any minute. We were told by my colorectal team that if my bowel perforated it would be a life-threatening situation.  It’s no life to live at the age of 26. My only option was the Ileostomy. It was a life changing surgery both mentally and physically, but one I needed to do for myself but also my family. I am incredibly blessed to have a 4 year old daughter and a husband whom we’ve been together for 8 years. This surgery wasn’t just about me. I didn’t want my daughter to have to sit on the bathroom floor watching an iPad whilst I would spend hours in absolute agony crying just trying to go to the toilet. I didn’t want my husband to keep worrying that every agonising flare could lead to a life-threatening situation. 

Chronic illness is not just an ‘illness’. It's draining, frustrating, frightening, exhausting, debilitating, relentless and damn right unfair. You have to realise it doesn’t just affect you, it affects everyone closest to you. My husband has had to watch me over the years go through countless failed treatments, surgeries, medications, fertility issues, premature labour, secondary infertility, chemical menopause, but still he’s there by my side as a pillar of strength. He is the one asking the consultants questions when I freeze in fear. Our marriage is not controlled by my illness, but it is a part of what makes our marriage strong. Illness tests your marriage in many ways, but your love for one another is what carries you through. 

We are also a team, and that team includes our daughter. My health deteriorated after my premature labour to Grace, but we count our blessings every day that we were able to have our miracle. I once was told by a consultant at the age of 18 to have a hysterectomy (thankfully I didn’t listen to the advice). We longed for Grace, and she truly is our miracle, but I am not going to pretend that being a parent whilst chronically ill is not hard. At the beginning I tried my hardest to protect Grace from a lot of my Illness, even if it meant getting a family member or friend to look after her so she didn’t have to sit in hospital waiting rooms with me for hours on end. 

I’ll never forget my first major challenge with parenting was when we had to start toilet training Grace. I have lived with an Indwelling catheter for over a year now, but when I first had it Grace found it hard to grasp as to why I was toilet training her when mummy doesn’t go on the toilet. It’s hard for little ones to completely understand at such a young age. That’s when I felt different to other mums. 

 As the years have gone by and now Grace is in school, she has a better understanding and understands Hospitals are not such a scary place and that they actually help mummy. After my most recent surgery she didn’t even bat an eyelid when I came home with not just my catheter, but also a stoma bag.  

To any Chronically ill Mamas reading this I know it’s hard and we worry that somehow, we are letting our children down. But we are NOT. Children are incredibly resilient and should be given so much more credit. Be honest with your children. Don’t let them be fearful of your illness. Remember allowing them to understand what you go through is teaching them to be compassionate to others, to always be kind & that not every illness is visible.