Every Part of My Body Hurt is not only a very apt description of the disease, but also a challenging article about one woman's experiences of endometriosis, diagnosis, treatment, and not recovering, but taking control of her treatment options.
What are the aims of Endometriosis Awareness Day 2004?
- To promote a greater awareness and understanding of endometriosis as a very real and, for many, a debilitating and disabling disease.
- To highlight the consequences of living with endometriosis for the sufferer, carer and all those affected by the disease
- To create a greater awareness and understanding of endometriosis amongst the medical profession, education sector, employers, politicians, unions and society in general.
I see that it is still taking women an average of 7 years to get a diagnosis of endometriosis. For me that was certainly true almost to the week.
I spent most of that 7 years being told I'd grow out of it, I'd be fine once I'd had a baby, or that everyone has period pains and I should stop making such a fuss.
I knew that what I was dealing with in terms of pain was a totally different matter from the usual period pain I saw amongst my schoolfriends, which was often eased with a paracetamol or two. I also knew that no amount of (alleged) low pain threshold could account for the writhing in agony on my bedroom floor, collapsing at school, screaming out in pain, which greeted me monthly.
But apart from my friends, to whom it was clear there was something very wrong with me, no-one would acknowledge that this wasn't normal, or do anything to help me.
I spent several years on and off the contraceptive pill. It didn't help with the pain especially, but using it slyly I could run two packs together to skip a period if it was due during exam time, say. Other than that and the average painkillers I wasn't offered any help.
Eventually, one day in despair and unable to stand upright, I turned up at the GP's surgery while I had my period. This woman, who wasn't even my usual doctor, actually saw what I was going through, and did an instant urgent referral to gynaecology.
A few months and a laparoscopy later, I was diagnosed with endometriosis, PCOS and something else whose name I always forget, since the gynaecologist mentioned it once while I was ocming round from the anaesthetic, and that was the first and last time I heard of it! Oh yes, pelvic congestion.
But yes diathermy, ovarian drilling, and many, many drugs later, it waned for a while - for which I am eternally grateful - but now the symptoms are well and truly back.
Watch this space...
GPs call for better treatment of asylum seekers is a very reassuring article, proving to me that there are still good souls in the world, who consider people before profits and such.