by Carly Bird

Created on: June 21, 2010

I don’t live with endometriosis; it lives with me. I have never come to terms with my diagnosis and cannot seem to accept its significance in my life. However, this is not a completely negative reflection on my experiences of having endometriosis as I believe that having this disease has challenged my self awareness and forced me to recognise what is important for my life.

Endometriosis is defined as a disease in which endometrial cells which form the lining of the womb are also found elsewhere in the body (1). Common symptoms include painful periods, heavy bleeding during periods, pain during intercourse and problems affecting the bowel and bladder, amongst others (1). There is no known cause of endometriosis but many theories of its aetiology. Some believe that during menstruation blood flows back into the pelvis. More recently, experts are theorising that endometriosis may have an autoimmune origin (2). Since my diagnosis four years ago, researching the disease I have has become an important part of managing this imposter in my life. “Knowledge is power” when fighting this demon within.

In 1994, I was 13 years old. As a ‘tom boy’ who refused to wear skirts and lived for riding horses, starting puberty did not come easy. I did not want to become a woman. My youngest brother noticed the changes to my body shape first. Much to my displeasure, the whole family laughed as he called me “full body”. My first period quickly followed these bodily changes. I remember it well; I woke one morning with stomach ache. I had never felt such a pain before and when I went to the toilet I saw the reason for it staring back at me. Horrified, I ran back to my bed and stayed there, curled into a tight ball until my mum offered me a sanitary towel.

Over the next 5 years periods became ‘normal’. Everyone at my old girls High School was having them, and we had ‘sex education’ so I knew that what was happening to me was indeed puberty. What I didn’t know was that it wasn’t happening quite how it was supposed to. I was developing endometriosis and so the pain, discomfort and difficulties in my life commenced. I thought it was ‘normal’ to have tummy ache when I had a period as my mum told me it was. Each month I would search the house for loose change until I had 13 pence so that I could run to the corner shop and buy a small container of paracetamol for the pain.

When I was 18 years old I packed

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