How to Be an Endometriosis Advocate in 2018

How to Be an Endometriosis Advocate in 2018

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The year 2017 saw some exciting changes in the way society and the medical world views endometriosis. Finally, thanks to our persistence, the world is beginning to see the invisible disease and hear the once-voiceless voices.

While I believe that we need others to support our cause and we can’t and shouldn’t do this alone, I feel that for now, at least, we need to be the leaders of this revolution.

I wholeheartedly understand that for some of us, the effort of keeping our bodies and lives going is hard enough and that there is little to no energy left to fight further. Yet, whether you’d like to take action in a big way or in a small way, there are things we can do to help create change in 2018.

Educate

This is a step that can be done on any level that you can manage. It can start and end with your doctor if that’s all you have energy for this year. Many of us know that a number of GPs are not fully educated about endometriosis. In fact, I know women who have had to spell the condition out to their doctors and explain what it is.

For those with doctors who know about the condition, be sure to talk to them about all of your symptoms, so that they learn to recognize the more unusual symptoms that can be dismissed as other conditions. Alternatively, let them know if you find relief from something. An endo nurse once asked me for my personal experience and took notes on how the diet had helped me.

If you want to go bigger with education, there are a number of ways you can do this. Starting with your own circle is an easy way to begin: Let your family and friends know what the disease is and what life is really like living with it. As endometriosis affects one in 10 women, it’s likely they know someone else who is struggling to be diagnosed, and this could indirectly help them.

If you want to educate on a larger scale, the next idea could be for you to …

Support a charity

A small number of endometriosis charities exist around the world, but they are popping up more and more. You can become involved in various ways.

You could help educate women about their rights and how to better manage the disease as a support group leader with Endometriosis UK, or take part in the Endometriosis Worldwide March. You could even get involved with the newly founded Endometriosis Coalition, supporting them with social media and advocacy work.

Research what’s available in your country as well as any online opportunities you could do from where you live.

Take to social media

If getting involved as a volunteer is a bit too much of a commitment at this time in your life, another brilliant way to be an advocate is through social media. Instagram has a strong endometriosis community with women sharing their stories on their personal accounts or creating accounts dedicated to the cause.

Posting regularly can be difficult, so think about the level of commitment you want to make, and this will help you decide if you’d like to just share more information on your own social media accounts or if you’d like to start something bigger.

Get political

Endometriosis was debated last year among MPs in the UK thanks to an online petition. In recent years, online campaigns have created change due to pressure from the public on governments across the world. Following the success of these campaigns, I suspect we’ll see more in 2018.

You can sign up for the websites that share these campaigns, and you can also filter which emails you’d like to receive. Change and Avaaz are two great organizations.

Just as a word of warning, I would minimize the number of options you tick as there are a great many causes in this world. While I’d love to support all of them, it can be overwhelming. It’s wonderful to support causes close to your heart, but when your health is vulnerable, it’s important to protect yourself as well.

Start something

If you’d like to do something a little different, you could try starting a blog or a YouTube channel. Perhaps you could start a book club with endometriosis patients in your area, or maybe you could arrange days out or coffee mornings.

Just be mindful of your capabilities. Unless you’re a doctor or a medical specialist, you can’t give medical advice. Protect the individuals you work with and yourself by being clear with them about your boundaries and limitations.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

3 comments

  1. Aj says:

    Living with endometriosis has been challenging and finding resources with valuable and beneficial content has been close to impossible, until I stumbled upon your site. I’m grateful for the educational and helpful content that you post!

  2. Kiarra says:

    I’m a 21 year old female & I’ve been coping with endo and pcos for four years now (it has rendered me infertile, even with the treatments I’ve undergone). I’ve had 2 laparoscopies where they burnt out as much endometrioma as possible, I’ve tried an array of pain medications, I’ve also been on Lupron, as well as a number of different hormone treatments & the Nuva Ring (which my body had terrible reactions to.)
    The only treatment I’ve taken that helps to alleviate my pain associated with my endometriosis and pcos is non decarboxylated CBD oil. There are no narcotics in CBD oil so it is legal for just about every state and country. Humans naturally have various receptors located throughout the body that the CBD acts through (which is why it works). I’ve been using it for about 2 months now and my quality of life has drastically improved. I still feel bad, just not nearly as bad as I was before I started this alternative medicine. The CBD oil acts as an anti inflammatory & also greatly aides in the gastrointestinal issues I experience on a daily basis (before I tried this I would be feeling absolutely terrible for almost 2 1/2-3 weeks out of the entire month, every month.)
    CBD oil is not FDA approved in the USA, however neither is Lupon, and that was prescribed to me by a doctor (and gave me THE WORST side effects I’ve ever experienced.) If the treatments your doctor is offering aren’t working for you, give this a try! I’m still looking for alternative help such nutritional advice, since what you eat DOES definitely effect your disease!

  3. PORSCHA says:

    What you are all saying is true. I had the same effects with endo. I had it severely for 22yrs. and it just got better, i could barely believe it because i never had a light short menstrual ever. but this time i did so i retraced what was different and i found that besides eating healthy, i prayed, i wasnt stressed for once, and that underlying cause was stress. it can harm your body especially with endo. causing inflammation flare ups ibs etc. im not saying this is a cure and everyones body is different. i just noticed what was different and the outcome. when i stopped letting small to large things upset me, amd i stopped taking on tasks and things i truly didnt want to do, and just did what made me content , i felt freed which allowed my body to relax,hence no pain so great as before and no nausea vomitting, pevic pain back pain , and cycle lighghter,plus i do aroma therapy and massage my back and stomach with lavender oil and coconut carrier oil, because doctors used me as guinea pig for so many medications that just didnt help.i pray this is helpful.

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