I decided to take it to the streets (the social media streets that is) and ask people what they would like others to know about endometriosis. Who better to talk about endometriosis than those who suffer with it every day? Here’s the much needed information we want people to know about the disease:
• “We are almost always in pain. There is no cure.”
• “Endometriosis is more common than asthma and diabetes. Yet the medical community more specifically the ACOG is so out dated, people are still taking 9-10 years to get a diagnosis. It only takes 3.5 years to sail around the world, but 176 million people are suffering worldwide with endo and most OBGYNs do not know how to properly treat endo.”
• “Endometriosis is not just ‘killer cramps.’”
-Heather Guidone, Center for Endometriosis Care
• “Endometriosis can lead to other health issues as well as mask itself as other health problems without properly being diagnosed.”
-Rebecca Gardner, Worldwide EndoMarch South Carolina
• “It’s more than just a period issue. It impacts your WHOLE life. Not just your period.”
• “We want to be there, more than you know, but some days we just can’t. Physically, mentally, emotionally endometriosis steals so much away from you.”
• “There is NO cure, despite the myths you may hear, as of right now it’s a life-long invisible illness.”
-Courtney Raye-ann Vallier
• “No person should miss out on school, career, social participation, or motherhood because of pain and painful periods.”
-Dr. Sallie Sarrel, PT, ATC, DPT
• “Extra pelvic disease is not rare. Endometriosis is a whole body disease that can affect every system of the body.”
• “It spreads like wildfire, is hard to get rid of and causes constant pain. We aren’t faking pain. . . we’re faking wellness.”
• “I recently had a flare so bad that I felt like I was in active labor. I was vomiting and going in and out of consciousness because of the pain. I read somewhere that the pain we go through can actually feel like a woman who is 7-8 cm dilated, in active labor, having a contraction. I definitely felt that.”
• “Even excision surgery is no cure! I’ve had countless ill-informed doctors dismiss my endo because I had that surgery.”
• “It doesn’t just destroy our bodies. It destroys our minds and hearts because of the depression and anxiety we get from being in pain 24/7 and everyone treating us like it’s all in our heads. It also destroys relationships with our family and friends. It’s not just us that suffer. It’s everyone close to us who suffers too.”
-Alexandra Ali Morgan
• “It takes a toll on your relationships. People that love you try to understand, but have no idea what to do to help so it is also frustrating for them not just us. My hubby and I got in to that talk the other day. I have always said this is an US thing even though I feel like I’m fighting by myself he has never left my side! We also have to try so many medications for our symptoms.”
• “We want to get better to feel better and do what we want to do. Don’t just see us as baby making machines, trying to help us get pregnant. Especially when you haven’t even asked if that is our goal. Ask the patient what their goal is!”
• “We experience painful sex and some of us will never be able to be a mother.”
• “Endometriosis caused my bowel and bladder pain. I haven’t had those pains in five years since having excision surgery.”
• “There is no cure despite excision by a top doctor, despite those commercials, despite anti-inflammatory diets. It’s managed if you have lots of money. Most of us have much more than endo.”
• “Stop. Comparing. Normal. Periods. To. Life. With. Endo.”
• “It’s not just a ‘woman’s disease’. It can affect the entire family when an individual suffers from endo.”
-Melissa Tison, Endo InVisible
• “It is a horrible, silent disease.”
• “Suppressives in the GnRH category, hysterectomy with ovarian removal, and high doses of progesterone are putting people into severe estrogen deprivation far too young. It’s leading to severe osteo issues, which are not always reversible.”
• “Researching and finding a competent doctor made me not commit suicide. I had a plan for it if he wasn’t as good as he sounded. He was even better. Finding him saved my life.”
• “There is not cure even after a hysterectomy, which I had in 2017.”
• “Endo almost killed me; it’s not the end. I’m living hope.”
• “It will completely redefine what your ‘normal’ looks, feels, and acts like.”
-Michelle N. Johnson, Fighting Fiercely
• “More of us are told the pain is in our heads than actually being believed and helped. It’s not just a bad period!! It’s so so so much more.”
• “Endometriosis is tissue similar to the uterine line. It is not identical to uterine tissue.”
As you can see, endometriosis is a complex disease that has a wide range of physical, mental, and emotional aspects that impact every facet of our lives as well as our loved ones. It’s important that we continue speaking up as much as we feel comfortable to help spread awareness, provide education, and hopefully get closer to finding a cure.
Thank you so much to everyone who participated in this blog. I’m so grateful you all wanted to share. We are all strong Endo warriors! Keep fighting!
Your comment will be posted after it is approved.
Leave a Reply.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.