“My hope, is that others with this illness can get a proper diagnosis and the care and treatment they deserve as quickly as possible.”
Enduring Endometriosis by Jacqueline Moon
No matter your level of familiarity with endometriosis, you’ve probably heard some untruths about the disease. Some of it is old info that is no longer considered accurate, some is lazy journalism, and some is misinformation spread by well-meaning (or even less-well-meaning) physicians. The people with endometriosis, however — well, they understand the truths quite clearly. And the truth matters because millions of women in the United States suffer from the disease and are ignored time and again.
Okay, so what is endometriosis? The lack of understanding with this common illness needs to be cleared up. Here’s what endometriosis is, as explained by Roanoker Laura Ann Mericle, who has been living with it for years: It’s a “disease in which tissue that’s similar to the lining of the uterus is found outside of the uterus.”
So then, it’s a woman’s pelvic problem — like really bad cramps? Mericle gives an emphatic no. “It isn’t just a pelvic disease, because it affects the whole body. It has been proven to affect every organ and structure in the body except the spleen.” And while endometriosis has been waved away as a case of “killer cramps,” even by doctors, it is absolutely not that simple. There certainly is pelvic pain involved, but
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Family • May 2020
the symptoms a woman with endometriosis can experience are many. “Common ones,” says Mericle, “are pelvic cramps, back pain, bowel and bladder pain, constipation/ diarrhea, bloating, fatigue, infertility, heavy periods, and painful sex. It can have a lot of co-existing conditions, as well, like interstitial cystitis, irritable bowel syndrome, PCOS, fibromyalgia, and adenomyosis, to name a few.” “Personally,” she goes on, “I have it on my bladder, both ureters, bowels, uterosacral ligaments, ovaries, and much more. The pain and symptoms are debilitating and affect every aspect of my life. It has robbed me of my education and career goals. I have lost friends and loved ones because of it. Over the last decade, I have had six surgeries in an attempt to find relief, along with countless procedures, medications, and even hormone injections like Lupron and Depo-Provera — which have proven to be damaging and ineffective, considering endometriosis creates its own estrogen. Bloating is another issue. Endometriosis bloat, or endo belly, is what we call it when our abdomen swells up due to inflammation. It happens drastically and in an instant. We can go from nothing to looking like we’re seven months pregnant in a matter of minutes.” According to the Center for Endometriosis Care in Atlanta, Georgia, endometriosis can spread to the lungs, diaphragm, lower back,
hips, buttocks, and other areas. It also isn’t just a grown woman’s disease; girls can have endometriosis too — even ones who aren’t menstruating yet.
Why is there such a lack of understanding? “Federal funding has largely ignored endometriosis, leaving research stymied, misunderstanding rampant in the medical community, and patients with huge bills not covered by insurance,” The Guardian’s Jessica Glenza reported in 2015. “The sheer scale of the disease puts its number of sufferers on par with well-known ‘quality of life’ maladies such as diabetes, which impacts roughly 13.4 million women according to US Centers for Disease Control figures.” The most common reason women with endometriosis first head to the doctor is chronic pelvic pain. The problem is that a lot of things can cause pelvic pain, and there isn’t a checklist doctors can go down to determine whether or not the issue is endometriosis. The only way endometriosis can be diagnosed is through surgery. That’s why most women who have the disease (a full three-fourths of them) are misdiagnosed. They go on to suffer intense pain for an average of seven to
