Raising awareness for endometriosis is a bit like getting blood out of a stone. To begin with, endometriosis isn't something which touches the heart strings. In spite of the fact that it affects so many women, it is still a misunderstood and under-rated disease.
In fact, if you go up to anyone in the street and ask them if they have heard of endometriosis, they will most likely say no.
Therefore it was imperative that someone come up with the idea of an awareness campaign. To begin with we had an Awareness Day. The CEO of Endometriosis UK decided to get as many women as possible to go up to Parliament and lobby their MPs. It took a couple of years to take hold but by the third year, there were more than 200 of us standing outside Parliament. I lobbied my MP twice and even attended an endometriosis debate. Sadly though none of the MPs whom we had lobbied stuck around for the debate and it was a disappointing turnout.
Awareness Day soon turned into Awareness Week & yet even then, there was very little interest in the disease. A few papers would run stories about women with endo but they'd always have happy endings and none of them really covered the true horrors of what it was like to live with endometriosis.
Every time I tried to raise awareness, it seemed as though I was banging my head against a brick wall. When my husband did the London Triathlon I had t-shirts printed out for myself and two of his friends. Only when the t-shirts arrived they had misspelled 'endometriosis', leaving out the 'N' and it was too late to have them re-printed. However, we decided to wear them and whilst Lee was swimming, cycling and running his heart out, the three of us handed out leaflets and tried to tell as many people as possible about the disease. Whether or not this worked, I have no idea. But at least I felt that I had done something.
Whilst Endometriosis UK refused to adopt the 'yellow' awareness ribbon that the rest of the world had adopted, social media had other ideas. In 2002 March was officially declared Awareness Month in America and soon all of the profile photos belonging to women with endo turned yellow.
In 2013 Dr Camran Nezhat came up with the idea of the Worldwide Endometriosis March, otherwise known as The Million March for Endometriosis. He wanted to take the world by storm and wanted people to take notice.
On March 13th 2014, women, men and children marched for endometriosis in 53 cities around the world and because this was something that had never been done before, I knew that this was something that I wanted to be a part of.
Because it was a weekday and because there was another march taking place in London, Endometriosis UK managed to arrange for us to walk in Kensington Gardens, rather than through the streets of London. My husband and I went up to London in a minibus along with another endo sufferer and her husband. We met my mum and an old work colleague of my husband's in Kensington Gardens and we walked around the park with another 100+ women. Considering that it was a week day and that it was the first endo march, it was a pretty good turn out. We were exceptionally lucky with the weather and even though it was exhausting, I was really pleased that I had made the effort to get to London in order to be part of something extraordinary.
As each year passes, more women join the march and last year I believe that there were over 400 women in London alone.
This year there will be marches in various cities throughout the UK, including Manchester, Cardiff, Glasgow as well as in Northern Ireland. For more information about these marches, please visit Endometriosis UK.
In 2015 I was approached by a friend to ask if I would like to be involved in an Indigogo project, which involved a new endometriosis documentary called "Endo What?" Of course I jumped at the chance and put some money into the crowdfunding pot.
I had no idea that this film would take the world by storm. As far as I was concerned, it was just another endometriosis documentary. How wrong I was.
In March 2016 Endo What was premiered at a cinema in New York, before Shannon Cohn embarked on a gruelling national and international tour. On Monday March 21st I headed up to London to take part in the London Premiere and took my mum with me. Not only was the documentary awe inspiring, it also helped my mum finally understand what I had been living with all of these years. No matter that I had been trying to explain to her all these years what my pain was like - it seems that sitting down to watch a really good documentary was all that she needed!
Shannon has a vision. She wants all school nurses to be educated. She wants a DVD of Endo What in all of the schools and libraries. This film is an educational tool. It is something that all GPs and gynaecologists should watch, so that they stop misdiagnosing endometriosis. It's also been something that my friends and family have watched & I can't wait for them to sit down to the sequel....
If you're interested in watching the film just visit www.endowhat.com and follow the links.
Don't be embarrassed to talk about endo
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You're not better because you don't want to get better