Let's Talk About Endo

Welcome to my first Action Project of 2020! In my STEAM class called Disease, I created a presentation to help others learn about a disease/disorder that I live with called Endometriosis. This Unit is called "Body" where we explored the human body beyond the classroom. We went on an FE (Field Experience) to the Science and Industry Museum where we got to see the new "YOU" exhibit. In the exhibit we got to see the advances in medicine and medical technology that better help doctors diagnose and help patients. We also observed the different human bodies that were donated to science that have been kept in plastination (body preservation by replacing water and fat with plastic). We saw different systems like the nervous, cardiovascular, and muscular system, isolated from each other.

I connected my project to Sustainable Development Goal #3. SDGs are a list that the United Nations came up with, it consists of: 17 global goals to help us ensure we have a better future. SDG #3 is "Ensure all lives and promote well-being for all at all ages." My project directly relates to this goal because Endometriosis affects women's reproductive health.

Below is my slideshow, and my personal interview with Melissa. 


I chose to talk to Melissa about Endometriosis because she lives with the disease herself, and has had a very long journey to being diagnosed.

Question 1: How does endometriosis affect your daily life?

Answer: It depends on the day. But mostly it doesn’t allow me to fulfill everything I want to do during the day. Sometimes it’s just far too much when you have endometriosis. It impacts every single thing I do. It just depends on how bad it is. It can impact everything, life, school, personal life and relationships. It affects what I eat everyday. It affects how I live now, it shaped my life. It taught me a lot about strength which is a positive. It gave me a purpose and I've met amazing people in my life. I’m a very determined and motivated person but I think it’s held me back as well, it's like a double edged sword. Even though I’ve managed it over the years, it’s unpredictable and I never know what I’m going to get.

Question 2: Can you explain what Endometriosis feels like? Was there a long process to being diagnosed?

Answer: It feels different all of the time. It feels like someone is stabbing me in various parts of my body, hot or burning pain, I’ve heard from people with kids that the pain is worse than bearing a child. I call it the endo-flu. I feel run down, I’m in pain. My whole body just feels sick. My road to diagnosis was one of the longer ones. As a young individual I had very painful periods. I would rock back in forth on my couch. People thought I was a drug addict because I couldn’t control myself. My grandpa told me I was just one of those girls who had painful periods. I wouldn’t go to school because I literally couldn’t stand or sit in a desk. When I turned 23, I started to feel sick everyday. I thought it was a G.I problem. I said, I gotta figure this out and I had so many tests. They couldn’t find anything wrong with my stomach, they said I had IBS, which is a common mis-diagnosis. I went on the internet, and I read about endometriosis and went to the bookstore the next day and read a book about it. I went to my doctor with it and we did an ultrasound and she found a cyst on my ovary.

After my surgery, my doctor told me, “I’ve never seen anything this bad in my life. There’s nothing we can do, all of your organs are stuck together.” The next 6 months it got worse. I found a woman who lived in Michigan, she gave me information on an endometriosis specialist in Atlanta, I looked at the website and I wanted to meet the doctor immediately. It took around 8-10 years to find out what I had and I self-diagnosed myself.

Question 3: Since there is no known cure for endometriosis, what do you do for treatment to lessen the pain?

Answer: I’ve changed pretty much everything in my life. I had excision surgery. Where you cut the disease out, it pulls the roots out, so the likelihood of it coming back isn’t much. Besides the surgery, since the surgery is not a cure, I don’t drink, no gluten, no coffee (decaf), no sugar. Endometriosis feeds on inflammation. I didn’t give them all up at once, I slowly did it, and I did it over about 10 years. I do acupuncture every other week. I do supplements, turmeric, ginger, amino acids, stuff to help keep the body not as inflamed. I see a natural doctor as well.

Question 4: How advanced is your endometriosis?

Answer: I was not diagnosed with a stage until I went to an endo doctor. My doctor likes to call me stage 4 plus, because it keeps coming back. The stage depends on where, how much, and how many lesions. My last surgery I had 40 of them removed. I call them life benign tumors, and it helps people understand the pain better. So much is unknown about this disease.

Question 5: What is something you want people (who don't have it) to know about endometriosis? 

Answer: You will never understand it unless you have it. So please possess empathy towards people that have it. Instead of judging people who have it support them and understand their pain. Just because you can’t see it doesn’t mean it’s not there.

Question 6: When you are dealing with a flair up, what is something you think parents, your spouse, or siblings should know?

Answer: Listen. Communication, from both parties is very important. I think it’s very hard sometimes because of guilt. If we want to be left alone, please don’t take it personal. Look for changes in behavior, that might mean that we’re not feeling good and you can encourage us to go to a doctor or go to the hospital.

I super appreciate Melissa for sharing her journey with me. Her story is incredible and so is the work that she does to help create awareness for Endometriosis. For more information, check out her website here!