Advances to Endometriosis Advocacy
Last updated: July 2019
I have had endometriosis for close to two decades at this point. Things have changed so much over the years, and luckily, I feel like it has for the better. When I was going through my attempt to get diagnosed with endometriosis, everything was so much different and less informative than today. During my time, there were absolutely no places to go for support or educational materials. I have worked with Health Union, LLC with some of their other health condition websites, such as chronic migraine. I was thrilled to find out they were going to start a page for endometriosis, due to the lack of available information and support when I started down the road of dealing with an endometriosis diagnosis.
Facebook support groups
Now days, there are online support groups on Facebook for people with endometriosis. Most of these support groups operate in a way where they are private group. This means when you join and comment within the group, only members of the group can see your comments. Many Facebook groups operate like this in order to give their members a safe space to ask questions and to vent about family members or others in their lives who are not supportive. It is very helpful because members learn that they are not alone in what they are going through with their own experiences with endometriosis. It also provides a place to ask questions about other people's experiences with treatments, medications, and doctors. I honestly found my rheumatologist in a fibromyalgia Facebook support group, and have been seeing her since 2013!
Now that I am on disability, I have seen some more television commercials than I did prior to my disability. Much to my surprise, there is now a commercial of a woman at her gynecologist office where she is not being completely honest about her symptoms and her subconscious is running around the office telling her to be honest, and she finally does tell the doctor about all of her symptoms. This is a very good commercial for women to see because some women may feel embarrassed to bring up some of the symptoms of endometriosis, but a doctor cannot start to help treating a patient without her honesty.
There are several websites online that have information available about endometriosis. As with any internet source, it is a good idea to look at who is behind the website in order to know the information presented on the website is trustworthy information. Sources such as the Endometriosis Foundation of America and the EquinoxStudy have some websites with valid information. Now Health Union is adding to the information that is available as well through this site. An abundance of information is definitely a good thing for any health condition.
Books and documentaries
While I have not read any of the books that are now readily available online, there is a vast listing of books on endometriosis. The topics and titles range from "100 Questions and Answers About Endometriosis" to "Endometriosis and Pelvic Pain". There is also a documentary created by women with endometriosis called Endometriosis: The Inside Story. Information on these books can be located at this website.
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