In the first of our Awareness Week case studies, Elizabeth, 33 and from Bristol, tells us how many missed opportunities to diagnose endometriosis left her in debilitating pain and facing very difficult decisions.
I was diagnosed in 2015, after suffering with extremely painful periods, extreme fatigue and bowel complications for about 8 years. Ten years before, I’d had an ovary and fallopian tube removed from a twisted dermoid cyst. In my late twenties I’d been hospitalized on numerous occasions with unexplained abdominal pain, but endometriosis was never considered. In 2015 when pain was increasingly difficult to manage and fatigue was affecting my daily life I went to the GP worried that it was all in my head. She was the first person to listen to all the random symptoms and suggested it could be endometriosis.
I was referred to a consultant who, after an exploratory laparoscopy, diagnosed me with endometrioses and told me that because of its severity I was unable to have children. I was put on Zoladex for 6 months, and then underwent an operation to have my remaining fallopian tube removed, patches of endometriosis burned, and my adhesions separated. I was put back on the pill, which helped for 6 months, but then the bleeding started again and the pain returned. On returning to my consultant, I was told there wasn’t anything else to be done other than to keep putting me into the medical menopause. At this point, totally dejected, I relocated and changed consultants.
My health deteriorated significantly and more surgery was planned. Whilst on the waiting list, pain became so bad and constant that I returned to the consultant and begged for a hysterectomy. By this point I was taking morphine daily and my life had been seriously affected in all areas. Prior to the hysterectomy I needed another exploratory laparoscopy. Further endometriosis was found and after a long conversation with my consultant, who could see how endometriosis had taken over my life, I was recommended for a hysterectomy. This took place in October 2016 during which endometriosis around my body was also removed. Pathology results showed endometriosis within my womb.
So far I’m off the majority of my pain meds and seem to be doing well. I finally have an amazing team around me, including my consultant and my own specialist endo nurse. They have made the last twelve months much more bearable and I don’t know if I’d have got through this all without them.