Day 1: A step towards #EndoTheStigma
(Originally published on https://spielsofaquill.blogspot.com/ on March 1, 2021.)
We all love to imagine a life filled with What Ifs… We all love stories about invisible monsters… don’t we? Let me walk you through a scenario and let’s see how much fun you think it is:
Imagine a life where you had a hidden chronic illness that leaves you in debilitating pain, but every single time you tried seeking help you became a victim of medical gaslighting. Nobody understands you, your symptoms, or your behavior. You continue living life this way for over 12 years before one day you collapse in pain on the side of the road. You go into the doctor’s office expecting to be dismissed, but this time you finally walk out the door with a diagnosis for a condition that has no cure.
If you think that is scary, look around because 1 in 10 women live a life just like this thanks to a mystery condition called ENDOMETRIOSIS. Never heard of it? I wouldn’t be surprised because I myself never knew of it until that fine August morning back in 2019 when I sat across from my gynecologist with mixed emotions.
For the uninitiated, endometriosis is a painful disorder in which tissue similar to the ones that normally line the inside of your uterus (the endometrium) grows outside your uterus. Endometriosis is known to grow on almost all of the body’s organs but is most commonly found on the ovaries, fallopian tubes, or intestines. In women with endometriosis, the endometrial-like tissue acts exactly as the normal endometrial tissue would — it thickens, breaks down, and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped leading to other issues. Symptoms include but are not limited to lower abdominal pain, dysmenorrhea (extremely painful periods), heavy bleeding, pain with sexual intercourse, and infertility. Treatment options include pain medication, hormone therapy, laparoscopy, hysterectomy (removal of the uterus), and oophorectomy (removal of the ovaries). However, these are merely treatments for the symptoms and not the underlying condition. One of the first things that you get told after being diagnosed with endometriosis is that it has no cure. This means you have to learn to accept that you’ll continue to live a half-life, a cursed life just like you would if you were to survive on unicorn blood!
When they hear about the intensity of the illness for the first time, most people are surprised at the lack of awareness about this condition not only among the general public but also medical professionals. It took me 12 painful years and God knows how many doctors before I met my current gynecologist who gave me the diagnosis. But I am not too surprised that there isn’t much awareness about endometriosis out in the world. We still live in a world where certain sects of people still shy away from talking about the human reproductive system. If you can’t talk about the organs in your body, how do you expect to have a conversation about a related illness? It is like trying to talk about migraines without referring to the head, or about appendicitis without referring to the appendix! It has been about 1.5 years since my diagnoses, but there are only a select few in my life who know what I go through because as much as I hate to admit it, I myself have shied away from breaking the taboo and openly discussing this topic. But enough is enough!
March is Endometriosis Awareness Month. And this year, I have decided to write a blog series over the 31 days in March to shed light on endometriosis, my story, and anything else that might be relevant with a tiny hope in my heart that someday there will be a medical breakthrough that will let me and others live life fully! Till then, we will keep the conversation going and work on ending the stigma.
#EndoTheStigma
