I am 1 in 10, and I am taking part in Endometriosis UK's challenge #walkforendo because it takes an average of eight years to get a diagnosis for endometriosis in the UK. It's too long, and I want to raise awareness and vital funds to help ensure Endometriosis UK can continue its essential work to fight for those living with this chronic whole-body disease.
I am sharing my story because I feel it’s essential to spread awareness of this horrible disease, and I also want others who are suffering to know that they are not alone.
I had horrendous periods from the age of nine, and I had to stay home from school every month. When I got older, I started taking the pill, and it helped me cope a little bit better, and I could finally begin to live a more normal life. Fast forward to the summer of 2007, and that was when my health declined. I was in pain and had trouble functioning at work. My GP prescribed pain killers and was considering irritable bowel disease. Then, one morning in November, I woke up in devastating pain and called the ambulance. I stayed in the hospital for four days because it was a 9 cm cyst on my left ovary that had ruptured.
I thought I was okay after being discharged from the hospital. However, the pain continued, and in February 2008, I collapsed at work and was admitted into the hospital again. This time they had to remove my left ovary as well as an 8 cm cyst. At the age of 34, I was finally diagnosed with Endometriosis and unable to have any children.
I did not understand what Endometriosis was, and I began to do research, and I could finally connect the missing dots and why I had been feeling the way I had. Eventually, everything became clear to me, and it was devastating to learn that there is no cure for Endometriosis. Little did I know, but this was not the end of my endometriosis story.
In October 2008, I began to experience severe stomach pain, nausea, and trouble eating. My GP sent me for an emergency ultrasound, and when I saw the doctor, he pointed out to me that I had been coming to the hospital a lot, and then he said that there was nothing wrong with me and sent me home.
My pain worsened, and the months went on. Finally, I revisited my GP in March 2009, and she thought that I was only constipated. However, one month later, I became worse, and I couldn’t keep food down. I started to vomit, extreme pain in my stomach and couldn’t empty my bowels.
This time she told me to go straight to the hospital, and at first, they didn’t take me seriously. They still thought that I was constipated. But as the day progressed, the lady doctor on shift began to worry, and I had an X-ray and a flexible sigmoidoscopy.
They discovered that I had a twisted colon, and it was about to rupture, which is fatal. Inside my bowel, a mass of Endometriosis was blocking and caused my colon to twist. I had a lifesaving operation and woke up eight hours later with a stoma bag on my belly. Discharged from the hospital nine days later, I was still unwell, and I had a carer coming every day to look after my stoma and open wound. My wound was infected, and therefore they decided to let it heal from inside and out. Finally, in November 2009, my wound had healed, and I was once again admitted to the hospital for major surgery, and the stoma reversal was successful.
Today, Endometriosis has spread and attached itself to my bowel wall, bladder, uterus, cervix, and a large cyst around my non-functioning right ovary. Due to my previous major open surgeries, an operation is impossible; instead, I’m receiving treatment, a monthly injection that has forced my body into chemical menopause. Unfortunately, with menopause and monthly injections, more side effects emerge.
Endometriosis has affected my whole life, and people have told me that I am lazy, don’t want to work, unstable, that it’s all in my head, that I should get on with it because all women have “period pain.”
As a result, I have lost friends, relationships, and employment. Yet, I know that the operations that I had, the long and painful recovery and living with this severe disease are all part of the journey to where I am today.