Endometriosis [En-doh-mee-tree-ooh-sis] noun pathology
1. a body-wide disease where tissue similar to the lining of the uterus grows outside of the uterus causing pain, organ dysfunction, and/or infertility.
Endometriosis is a disease that affects an estimated 176 million+ women worldwide.
It is not a very known condition due to a lack of awareness. I did not know much about it until I was told I could possibly have it. I was diagnosed in June 2016 through laparoscopic surgery. I first began to have my symptoms at 14 years old. I did not hear the word Endometriosis until 19. On average it takes 8–10 years for women to be diagnosed.
The only way to properly be diagnosed is from a biopsy taken during a laparoscopy that is performed by an endo specialist. A regular gynecologist is not equipped to perform the procedure. No scans, blood testing, nor ultrasounds can aid in a diagnosis. All of my examinations would come back standard but yet I do have it. The best type of laparoscopic surgery to get is excision surgery. Not every obgyn can perform it effectively.
Endo can be different colors. Clear, red,yellow,white,blue,gray and black. This surgery is only a temporary fix. There is no cure for endo. It is fueled by estrogen. Even if you get a full or partial hysterectomy, it can grow back. The A.S.R.M Classification system rates women with different stages. This is done with a scale of 1–4. One meaning there is a minimal amount there, and four meaning the entire pelvic area is covered. However, 10–20% of women with stage 4 can experience no pain at all. A patient with stage 1 could have debilitating pain such as I do. I am either stage 2 or 3 according to the scale.
Women can develop something called an “Endo Belly.” This is when a woman becomes bloated and looks pregnant. I was asked not too long after my surgery if “I was pregnant or got thick on my own.” I was taken back by it because I am not pregnant nor was I at the time. Many women on the Facebook group Endometriosis and Me share stories of how they are asked the same question. Like me, they are not pregnant, and some are infertile due to the disease.
The most common symptoms are:
There are many facebook groups out there that speak on the condition. The main one I am apart of is Endometriosis and Me. I used this group as a tool to be able to vent and see that I am not alone in my fight with this debilitating chronic illness. I highly recommend it to anyone who thinks they might have it or wants to learn more about it.
If you think you have it or someone you know has it, I recommend you talk to a doctor about it.