My story is one of endo and education, two major conflicting parts of my life.
My periods started at the age of 13 and it soon became obvious that mine were different to everyone else’s. My school days were spent running to the bathroom to change pads, running to my locker to take painkillers and running to the school nurse for heat pads. I started going to the doctor about my heavy, painful periods at 14 and was told it was all normal. To help regulate the bleeding, I was put on the pill. The first one didn’t work for me at all as I became clinically depressed with all the hormones. Thankfully, the doctor realized quickly and changed the pill. The pain remained but at least I got through the rest of my school days with some control over when I would have my 10 day long period (scheduled to not appear during important exams). The doctor maintained that the pain was normal and I learnt to try to hide it from my friends since they all thought I was making it up for attention.
When I turned 18, I asked to be referred to gynecology. During my first year at university I had my first laparoscopy. It showed I had endometriosis on my left ovary. The surgeon lasered it off and inserted the Mirena coil. For the next year or so, I was both period and pain free for the first time. It was amazing! I loved life, had a cool, gorgeous boyfriend, had more of a social life than ever, worked two jobs and came top of my year in uni.
Then, a week after my 20th birthday, I collapsed at uni in unbearable pain. I was rushed to hospital and they sent me home to wait for a gynecology appointment. The pain was similar to my period pain but deeper and more intense. It didn’t have any pattern and was unpredictable. My life changed abruptly. I had to leave my job for something less physical, my boyfriend left the picture and I couldn’t wear jeans anymore. The only thing that I refused to change was my education.
Time went on and, convinced that the endometriosis could not have come back, I was shunted back and forth between various hospital departments. Eventually, I asked for a MRI scan which showed 13 cysts on my ovaries. Diagnosed with Polycystic Ovarian Syndrome (PCOS) I returned to gynecology. I was told to get pregnant. While I have always wanted children, getting pregnant to stop the pain without being married, without finishing my degree and without a proper job was something I couldn’t consider. Instead, I was given injections to put my body into an artificial menopause. When the menopause started, I had just finished my dissertation, was working full time in an office and was in love. Ten weeks later I was single and in hospital after reacting so badly to the injections I kept collapsing. During my week long stay, I was once again told the pain could not be caused by endometriosis and was told that it was all in my head. They wanted to put me on anti-depressants and refer me to psychiatry.
By this stage, I had had enough of people doubting the agony I was in. I graduated top in my year, winning a scholarship to do my Master’s degree and was determined to continue my education on my own terms. I demanded to be referred to the leading endometriosis specialist in Northern Ireland and to a pain clinic to manage my pain in the meantime. The pain clinic was excellent and helped me to manage the pain and, although I experienced side effects, I was able to have a higher quality of life. I tailored my life to fit around the pain and stopped being so hard on myself for needing to rest.
The specialist was unconvinced there was anything wrong with me so I again argued and asked for another operation. I had it in July 2012 and even as I was being led into theatre, the specialist was still adamant that he wouldn’t find anything. He was wrong. My pelvis was covered in endometriosis, around my uterus, vagina and pelvic wall. There was so much I would need a bigger operation. In September I started my PhD and in January 2013 I had the operation. In the six months, the endo had grown to cover my rectum and bowel as well as advancing around the pelvic wall. It was clear that I had a very aggressive form of the disease which had changed my life so completely yet had convinced experts that it was all in my head.
The main thing I’ve learnt through it all is to never give up and never stop fighting.
By Robyn Atcheson, Belfast
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