I'm What They Call An Endo-Warrior
By: Keristin Scott Photography: Rookie Mag
Endometriosis ... “endo” is the most common disease that most people have never heard of. Yet it affects 1 in 10 girls and women. That’s approximately 176,000,000 people on the planet!
Despite its prevalence, women see an average of 8 doctors for 10 years before receiving a diagnosis. Endometriosis is different in every female — which has proven that doctors who are not continuing their education on this disease may misdiagnose hundreds of women each year. (Which is what happened with me.)
Endometriosis pain can be excruciating and debilitating all month long. Most women (and doctors) believe it’s just menstruation or ovulation pain which is why it goes either unreported or misdiagnosed. It’s incredibly difficult to explain the pain: sharp stabbing, intense cramping, etc. Sometimes it feels like I’m sitting on knives which I know is a terribly awful image to imagine. Other symptoms, for me (and most women), can include heavy bleeding, infertility, pain during or after intercourse, urinary/bowel problems, brain fog, fatigue, lower back pain, and the list goes on and on and on and on.
This invisible illness can affect the body both physically and mentally. I’m constantly told, “You’re not sick.” or “There’s nothing wrong with you.” or “Put a smile on your face.” Somedays it’s more difficult to force a smile than it is to combat the pain. It’s not only disheartening and tiresome to get door after door shut in your face by family, friends, doctors, and co-workers, it becomes a mental battle that eventually starts weighing heavily on your mental state of mind. The mental battle can become just as painful as the physical pain which is why so many women are susceptible to developing depression. Imagine living with acute pain daily and being told it’s all in your head or that you’re being dramatic or sensitive about it.
While there are some things that can be done to help alleviate the pain (supplements, eliminating foods that cause inflammation from your diet, adding foods that reduce inflammation to your diet, epsom salt baths, heating pads, tens electric shock units, applying essential oils to areas of pain) nothing will ever permanently take away the pain or the disease.
Luckily for me, with the support of an amazing endo-warrior, who is now my endo-sister, I was guided toward the right specialist who told me, “I’m 90% sure you have endometriosis as well as some other pelvic pain conditions.” (Note: a laparoscopic diagnosis is the only way to actually confirm a proper endo diagnosis.) While I was lucky enough to find a great doctor right away, I wasn’t as lucky with my healthcare coverage. In fact, I had to pay for my specialist consultation out of pocket. I will admit the financial aspect of this journey has been the most stressful! (As I’m sure it is for every other person in the world even struggling with a common cold.)
Like so many others, my journey with endo is just beginning. I’ve personally struggled so much with being a people pleaser. This disease has forced me to take care of myself first and foremost for the first time in my life! It has made me feel incredibly weak and powerless, yet it has made me realize that I am strong and powerful. I live for the days where my endo has given me some time to enjoy my favorite activities.
Endometriosis can be a dreadfully painful disease and while it may be incurable and hard to manage at times, you are not alone! I can’t say that enough. Whether you have been diagnosed with endo or suspect you may have it, please know that there is a team of women behind you cheering you on, praying, hoping, wishing, dreaming for a cure and are fighting the battle alongside you each day.