Living with endometriosis: Anna's story

Anna was diagnosed with stage 4 endometriosis two weeks before her 18th birthday. She's since had 11 surgeries, and now lives with a permanent ileostomy bag. She dedicates her time to raising awareness, as she wants to make people aware of just how debilitating endometriosis can be, and support other people going through a similar journey. Anna is also supporting our campaign for menstrual wellbeing to be taught in schools in Wales, as she says "it's vital young people learn about menstrual health at school. Without this, young people will suffer in silence, like I did, whilst navigating school and exams".  A huge thank you to Anna for sharing her story. 

This is Anna's story

For the past 12 years I have suffered with chronic pain which later I found out was due to Stage 4 widespread Endometriosis. 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, he referred me back to my previous Gynaecologist, but she refused to agree with his findings. I was later seen by one of the top endometriosis surgeons in the UK. The surgeon did a diagnostic laparoscopy where he found I was riddled with Endometriosis. I was officially diagnosed with Stage 4 widespread severe 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 5.5hrs which included a bowel resection, catheter & a stomach drain. That was when my pain was validated, I felt listened too. But at the same time, I was completely blind sighted. 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.

Fast forward to May 2020 and I have undergone 11 surgeries due to this thankless disease which has left me with a permanent ileostomy, long term catheter, sacral nerve stimulator and a whole load of scars. 

What has been your biggest challenge in living with Endometriosis?

My biggest challenge I have had to face whilst living with Endometriosis is accepting that my body has limits. I can’t be superwoman, and that’s okay. For years I would work all hours, try to be super active, say ‘yes’ to everything but I paid the price because I would be bed bound in agony or worse id be admitted into hospital. Accepting my limits has been something that took time. When my health deteriorated further 12 months ago that’s when I decided to step down from my position in work and work 1 day a week, I also started a beauty business from home so I can control the hours I work. This way it gave me time to focus on my family and I wasn’t compromising my health further.

Another big challenge was accepting that it had destroyed one of my major organs, my bowel. Facing a life changing procedure like a permanent ileostomy was a huge fear of mine, one that I didn’t think would ever need to happen. I learnt from that day on never to underestimate how destructive Endometriosis can be.

What advice would you give your younger self knowing what you know now?

It would definitely be to make your voice heard. Do not suffer in silence and don’t let anyone undermine your pain. Suffering in silence is no way to live. If you have a medical professional ignore your symptoms, then seek a second opinion. Do not be afraid to question their knowledge or to seek advice from others.

Finally, thank you so much for all you do to raise awareness of Endometriosis and for fundraising for Endometriosis UK.  What is it that inspires you to talk so openly about Endometriosis?

Firstly, thank you for recognising that. I will always dedicate my time and energy into raising awareness surrounding endometriosis and the devastating impact it can have on someone’s life. Anytime I can host an event to raise funds for Endometriosis UK I will. Your charity helped me in so many ways when I was first diagnosed.

I always vowed when I was diagnosed that I would talk openly and honestly about my battle with Endometriosis so I could help someone in a similar position. For young girls to know they are not alone. For people to understand that painful debilitating periods are not normal. 

I spent so much time searching for people who I could relate to when I was first diagnosed. I desperately just wanted someone to relate to and for someone to say, ‘I completely understand how you feel’. Suffering with a chronic disease like Endometriosis can be extremely isolating, so connecting to others has saved my sanity. It’s the positive side of social media is connecting with ladies all around the world who can relate to exactly what you are going through.