2016: Ending Silence and Increasing Education Around Endometriosis

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2015 has been a spectacular year for endometriosis awareness in Australia. Sylvia Freedman, co-founder of EndoActive Australia and New Zealand has been, quite frankly, kicking ass. She and her Mum helped put together the first patient-centred endometriosis conference with a number of top-rate specialists, the content of which is now available in a DVD which has and will continue to help endometriosis sufferers. The Guardian also published a number of articles brining awareness to the condition and the voices of so many women were liberated in the process.

2015 was the year that I became someone with endometriosis after waiting for over a year and a half to find out. In the lead up to that surgery those articles helped me see the many different faces of endometriosis. Even up until the entered that operating theatre I doubted that I had it because I believed that girls with endometriosis didn’t look like me. They were in more pain, had to miss more school or work, and generally weren’t as okay as me…I felt like an imposter for even considering my meagre pain compared to their suffering. It took me a while to realise that I *was* in that much pain, I was too afraid of getting behind or being fired to admit it to anyone.  I was afraid that if I admitted it, the pain would feel more real and it would be worse…or, even more painful, people wouldn’t believe me. Reading the stories of other women made me realise that endometriosis looks like many different things. Some people have a lot of pain and very little disease, or a lot of disease and very little pain. Some people have surgery and end up in more pain because of scar tissue. Some women with stage IV, the most severe, endometriosis are able to conceive children while others have zero chance naturally or even with IVF. There are different levels, frequencies and severities of pain, but what matters is that women with endometriosis are in pain and they have been silent about it for too long. I discovered a million more stories as gained new sisters, endo sisters, who are keen to embrace you and welcome you into your brave new world.

What I have learned this year, and throughout the last couple of years, is that women are not encouraged to generally speak up about pain or periods. It is something that we are taught by society from an early age that menstruation is not something we talk about in polite conversation and questions become the realm of quiet conversations with only close friends, embarrassed Google searches, or if you’re lucky a conversation with a school nurse. In this environment of suppression how can we be expected to speak up about things we think are unusual? It is especially hard when we see that those of us that do speak up are often dismissed in the same way many a woman throughout history has been dismissed: we’re called crazy or hysterical, and told to suck it up because “it’s all in your head”. It’s not all in my head and I have the gory pictures to prove it. You know who never questioned my sanity? My specialist. And he’s a guy too and so is living proof that it is possible to be a male doctor and not condescend to your female patients. He always treated every word seriously and listened when I said I was afraid he wouldn’t find anything. I’ve been lucky to find him because hearing other people’s stories has assured me that many doctors out there, male and female, simply do not understand. That’s something we need to change.

In 2o15 we have come so far, but in 2016 we have further to go and more work to do. My personal contribution will be beginning to write about the experience of endometriosis and helping other voices come to light to help educate more people and maybe even medical professionals about what it is we live with every day. I’ll also be studying my nursing degree with the hopes that I can one day help girls like me by being a kick ass surgical nurse. But our goals as a community should be centred around further awareness and education, for everyone, so that women suffering feel safe and confident to say to their doctors, to their friends: I’m not okay, my period is hell and that’s not okay. Furthermore, we need to work harder in taking women’s pain seriously. Far too often women in pain are assumed to be dramatising or using pain as an excuse, and far too many times I’ve seen people make insensitive comments about that pain. The fleeting comment you make about how you wish you could get off work for period pain too hurts someone with chronic pain, because they would like nothing more than to have a normal life. The comment you make about your friend needing to “suck it up” because you get cramps too but don’t complain, is dismissive and frankly rude…you don’t know what is going on inside her body. Make 2016 the year you stop doing that. Make 2016 the year we take endometriosis seriously and start actively listening to the women that have it, because you will learn some astonishing things. You have an opportunity to learn so much and change the way the next generation of women think about their bodies, so they don’t think pain is their life sentence for being a woman. Reduce the average of 8 years it takes to get diagnosed because outside of the specialty area of endometriosis, an abhorrent number of medical professionals simply do not understand this disease.

March 2016 is Endometriosis Awareness and you can support the cause by sporting some sunny yellow attire and finding an awareness event. Endometriosis Australia is holding events in most major Australian capital cities. If you’re in pain, never assume it a sign of your own weakness or inability to deal with “a woman’s lot”…it’s not, and your pain matters. Ask you GP for a referral, and do your research. I was lucky enough to land one of the state’s foremost endometriosis specialists because my GP knew what she was talking about (because I really didn’t), but do better than I did at research. Find someone right for you and don’t be afraid to ask for second opinions. You have millions of Endo Sisters across the world eager to welcome you and help you through it, don’t be afraid to ask us!

Helpful Links:

Endometriosis Australia  http://www.endometriosisaustralia.org/

My Endometriosis Team (A social network just for us!)  http://www.myendometriosisteam.com/

Endo March Australia http://www.endomarchaustralia.com.au/

 

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