Endometriosis – The Destructive Disease

Anna Cooper will have undergone 16 surgeries for endometriosis - she shares her journey with a message to educate ourselves on the disease.

Originally published on: March 13th, 2023. Last modified on March 21st, 2023

Anna Cooper, 29 was diagnosed with endometriosis at the age of 17. She spent her teens suffering with heavy, erratic periods and severe abdominal pain. After 15 surgeries and her 16th planned to treat stage 4 endometriosis, Anna uses her social media platform and story to raise awareness about this destructive disease and explain why endometriosis is more than ‘just your period’.

Here’s Anna’s story…

My journey with endometriosis has been an incredibly turbulent one to say the least. I am 29 years of age and I have undergone 15 operations so far, with my 16th in the near future.

I was diagnosed with endometriosis when I was 17 (two weeks before my 18th birthday). I started my periods at the tender age of 11 and I suffered with them from the get go. They were heavy, erratic and painful. For years I was dismissed by medical professionals. I was told I needed to get used to it and that painful periods were part of being a woman (shocking I know).

It was when I was 17 that I was finally diagnosed with stage 4 widespread endometriosis.

It had destroyed my bowel, bladder, grew all over my womb, ovaries and fallopian tubes. Two weeks after the diagnosis I had to undergo major surgery to have my bowel resected as the endometriosis had grown into my bowel. That’s where the nightmare began.

“I felt completely numb.”

At first, I felt utter relief that I finally had the answer to the pain I had been suffering, but at the same time I was faced with a lifelong disease that had no cure. I felt completely numb. Little did I know that for the next 10 plus years, bowel endometriosis would rule my life.

I was in my early twenties suffering from bowel incontinence, incredibly painful bowel movements, rectal bleeding, severe bloating and sickness. I felt like I couldn’t relate to anyone my age.

Every leaflet I was handed by the doctors has elderly people staring back at me. I was isolated  and felt more alone than ever. After 7 surgeries to remove endometriosis, my bowel had started to lose its normal function. I was referred for a sacral nerve stimulator (this is similar to a pacemaker but it is inserted near the spinal nerves that controls the bowel muscles).

I remember being given the leaflet about the sacral nerve stimulator and it was full of people in their 70s/80s, I felt completely out of my depth and that I was old before my time.

Anna Cooper - Patient Story
Anna Cooper - Patient Story

“I was faced with a life changing option”

Fast forward 2 years later and my sacral nerve stimulator was having no impact on my body whatsoever. My large colon was classed as a ‘dead bowel’ because it had zero function. I spent hours/days/months of my life having to take extremely aggressive laxatives, enemas, and colonic irrigation. That’s when I was faced with a life changing option which was to have an ileostomy.

An ileostomy is where they divert your small bowel out through your abdomen into a stoma bag. I had my first one formed in March 2020 but this sadly was done incorrectly and my stoma started to retract (it sunk fully under the skin).

“This was all happening during the pandemic”

So after having an operation with a huge change to my body I was faced with the extra worry of it not working. I was in and out of hospital for the first 12 months with blockages, my stoma stopping functioning, and being severely sick. It was absolute hell. This was all happening during the pandemic as well!

Finally in May 2021 I had my stoma revised, my large colon removed and adhesiolysis  to  remove some more endometriosis. It was an open surgery and it has left me with a huge scar down my stomach, but it has been a small price to pay as the way my bowel had become life threatening.

“It’s a long journey, but I’m taking one step at a time”

I’m not out of the woods yet and it’s a long journey, but I’m taking one step at a time. I’m facing my next challenge during the next couple of months which is a urostomy (where they create another stoma to divert your urine out your stomach). This is due to the years of failed indwelling catheters and now suprapubic catheters.

For some reason my body seems to enjoy rejecting and expelling catheters which is a pain that is utterly excruciating. It leaves me bed bound for days and losing clots as large as my hands (not healthy I know!). The last resort is the urostomy. I fear having two stomas on my stomach, I also fear the waiting times at our hospital. How bad will things get before they get to me? Sadly the current state of our healthcare system means everything is a long wait. So for now I wait.

Living with an indwelling catheter that expels every few weeks causing an extreme amount of pain, infections and bleeding. It’s far from ideal. Most days I despair due to the pain but I’m trying to keep positive.

“1 in 10 women suffer with endometriosis”

Some people find it strange that I share so much openly. The point in me opening up my life to strangers is to educate. People often think endometriosis is just to do with your periods. It’s far from that!

Endometriosis is a debilitating, life long, devastating disease that can destroy some of your most vital organs. We need to raise more awareness in order for others to understand. 1 in 10 women suffer with endometriosis but yet 56% of the population don’t know what endometriosis is.

We need change for our future generations.

You can follow Anna on instagram and TikTok @battlewithendo_ox

Find out more about the symptoms, treatments of endometriosis and read  more patient stories on our website.

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