Our health has been in the forefront of our minds the past year as we’ve lived and continue to live with an ever-present pandemic. We have all taken precautions to keep ourselves safe, our loved one’s healthy, and our friends and neighbors well.
We quarantined, we washed our hands, we wore masks, and we worried. We waited patiently for a vaccine. We have hope now that things might go back to normal or at least develop a “new normal” in which we can socialize, see our loved ones, and do the things we once did without any worry of illness.
However, there is a glimmer of hope in this pandemic. Women with endometriosis don’t have that yet.
March is Endometriosis Awareness Month, and each week, I will be discussing a different aspect of living with this painful, and sometimes horrific, illness. It’s not always going to be “light and fluffy.” Some of the articles might be hard to read, but it will outline the real life of an endometriosis patient.
First things first, what is it? Endometriosis is a disease in which the lining of the uterus spreads to the outside of the reproductive organs and surrounding organs in the abdomen. (I hope I haven’t lost you at the mention of uterus; bear with me. I know such things can be taboo and not considered a polite topic of conversation.)
This causes debilitating pain, inflammation, nausea, vomiting, diarrhea, urinary pain, allergies, acne, adhesions, the list goes on. Some days, the pain can be intense. Missing work, school, and other obligations becomes the norm often adding a layer of stress to an already difficult situation. The pain removes a woman from her everyday life, then she feels guilty. The guilt manifests into stress. The stress exacerbates the pain. It’s a vicious cycle.
Endometriosis is often called an “invisible illness” because no one can see it. Because it is not visible, endometriosis is often overlooked, misdiagnosed, or dismissed completely. Many times, the pain is so great, women make doctor visits to seek relief from “killer cramps” only to be labeled a pain-pill seeker.
It is normal, in 2021, for women to go 10 years without an accurate diagnosis, which can only be done through the surgical removal of an endometriosis lesion which is then sent to pathology for confirmation. Getting a diagnosis is a relief for many because endometriosis patients have been accused of faking symptoms, being lazy, being unreliable, or simply too weak to handle pain considered to be “a woman’s lot in life.”
Ten years. Think about how much life is lived (and lost) in that amount of time. However, the relief from the diagnosis is short lived once the patient learns there is no cure for endometriosis, there is no gold standard of treatment, and most OB/GYNs really don’t know how to identify or treat it properly.
Patients undergo countless surgeries to remove lesions that have grown back or spread, horrific hormone injections that do more harm that good, which adds to the general despair when fighting an uphill battle with their health.
Luckily, there are doctors and clinics dedicated to the treatment of endometriosis, but they are hard to find and patients are not usually referred to them by healthcare providers. It takes a lot of research and perseverance to learn about the disease process and get the proper treatment. This month, I will discuss the disease, treatment, and how to support someone in your life who may be battling endometriosis. It’s very possible because 1 in 10 women have it; 176 million women worldwide fight it every day.