This has been quite a busy couple of weeks! I missed last week's blog post about what my favorite goal would be. Well, this week, I would like to talk about why it is so important to raise awareness and educate as many people as possible about endometriosis, inspired by the reason I missed last week's post: a bad ER visit. I went to a local hospital and was absolutely appalled by the care I received. After explaining that I had a history of severe endometriosis, kidney disease, and retroperitoneal fibrosis, I told them I was having terrible right sided pelvic pain, and pain in my right kidney. I was given only a "warm blanket" as pain relief until an ultrasound revealed two complex ovarian cysts on the right ovary, measuring a total of 5cm. I also had a 6mm kidney stone in the left kidney. When I tried explaining the nature of endometriosis, and mentioned advocating and going to the EndoMarch, the nurse asked why we were marching. I said that one reason was to get government funding for Endometriosis health organizations, and the nurse responded with, "And who would take that on? Planned Parenthood?!"
In light of that disgusting display of ignorance, I'm proud to announce that I have founded Ask Me About My Endo. I wanted to created a T-shirt I could wear when I visit the ER to encourage them to talk to me about my disease, and hopefully learn a little bit about it.
Out of that tiny idea, a much farther-reaching project was born. Ask Me About My Endo (AMAME) is spreading endometriosis awareness and advocacy by getting people talking! Endometriosis affects 1 in 10 women, or 176 million women worldwide, with an average delay in diagnosis ranging from 6-10 years. Years of misdiagnosis and ineffective treatment negatively impacts the patient's quality of life. The physical, emotional, and social effects of endometriosis can be lessened with early diagnosis and complete surgical excision in many cases, particularly in coordination with a multidisciplinary approach to treating pain holistically. AMAME strives to get patients talking about their endometriosis instead of hiding it. Let's clarify the misunderstandings, dispel the myths, share effective treatment options, and refer to the best specialists possible! A three-fold program, AMAME incorporates online resources (website coming soon!), awareness merchandise, and non-profit efforts, such as the Endometriosis Awareness Music Project for teen outreach. To find out more and get involved, check out our Facebook page, Ask Me About My Endo, Twitter: @AskAboutEndo, or email: askmeaboutmyendo@gmail.com.
I am so excited so start this project, and I can't wait to see what we can do! So...who will YOU talk to today?
Check out some of our first designs, which are perfect for wearing to the EndoMarch! I've already ordered my husband and myself lots of gear, and I can't wait to show it off! All merchandise can be found at the Ask Me About My Endo store
Can't wait to see everyone at the EndoMarch!
Oh good lord! A nurse said that?!! Shame on her.
ReplyDelete