My whole life I've had incredibly painful periods. A few times per month, the pain gets so bad that I am doubled over with it. I get nauseated, achy, bloated — the pain radiates around my body like a demonic ping pong ball. I remember very distinctly being told by my gym teacher that I was just faking the pain to get out of gym class, even after I'd had to run to the bathroom to throw up because it became so overwhelming. But I'm not alone in this experience. There are so many common misconceptions about endometriosis that affect the lives of those who suffer each and every day. Beyond that, I've learned that many people don't know what to look for or how it might present, so it is preventing them from getting the assistance they need.
According to the Mayo Clinic, endometriosis is "an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus." One of the biggest misconceptions about endometriosis according to Dr. Sheryl Ross, OB-GYN, is that it's a disease that only exists in older women, when in fact, it can happen to teenagers and people in their 20s. Another big misconception is that having endometriosis automatically means you'll never be able to have kids.
“Women are still being told [that] young women don’t get it, if you have it, you can’t conceive (but if you have a baby that will 'fix' you), that it always comes back," Heather Guidone, Program Director, Center for Endometriosis Care shared with Romper. "None of this is true.”
And, unfortunately, those aren't the only misconceptions.
1. Surgery Will Definitely Cure It
Mark P. Trolice, MD, FACOG, FACS, FACE Associate Professor of Obstetrics and Gynecology at the UCF College of Medicine, tells Romper that another myth about endometriosis is that surgery is the cure-all. It's not. He notes that while "approximately 75 percent of women have initial pain relief following surgery, nearly 20 percent of women undergo repeat surgery within two years due to symptoms." And, he adds, symptom recurrence is approximately 40 percent by 10 years.
One of the questions I'm asked most frequently is why I haven't just had a hysterectomy if the symptoms are so severe, and I don't have a great answer for people who ask other than, "I was advised not to do so."
It should also be noted that there is no cure for endometriosis, so an invasive surgery like a hysterectomy will only treat the pain of endometriosis, and not endometriosis itself, per the University of Michigan.
2. Your Options Are Limited
Amy L. Metzger, CNM, MSN, tells Romper that while most people have always assumed (and told me as much) that surgery was the only solution for me, it's really not. She says, "There are a variety of treatment options ranging from medication to manage symptoms to surgery to remove scar tissue and adhesions." She adds that everyone's case is unique, and that "your plan of care should be developed based on your unique situation and goals." For example, she says, "Treatment options for a woman who wants to have children versus one who does not can be quite different."
3. Pain Is The Only Symptom
Metzger tells Romper, "In addition to pain during menstruation, symptoms of endometriosis may include heavy bleeding, pain during ovulation and during and after sex, chronic pelvic pain, pain during urination or bowel movements during your period, and difficulty becoming pregnant."
Honestly, I have experienced all of these in some degree, but not everybody does, Metzger says.
4. If Your OB-GYN Hasn't Diagnosed You, You Don't Have It
Many women don't understand why they aren't getting pregnant, and don't realize that this is the problem until seeking further help than their OB-GYN, Reproductive Endocrinologist Armando Hernandez-Rey, MD from Conceptions Florida tells Romper. "Women who have difficult and painful periods, including back pain, nausea, cramps, and more, may have been suffering their whole lives with undiagnosed endometriosis. It is notoriously difficult to identify, and can only be formally diagnosed through exploratory surgery, usually done laparoscopically, through one or two small holes in the abdomen."
5. The Worse Your Endometriosis Is, The Worse The Pain Is
Trolice tells Romper, "Often the degree of pelvic pain is disproportionate to the stage of endometriosis." In other words, he explains, "Severe pelvic pain may show only minimal to mild endometriosis and vice versa."
6. It's Only In Your Endometrium
A big myth is that the scar tissue is only in your uterus and its lining. That simply isn't true, according to Dr. Tamer Seckin, board-certified gynecologist and laparoscopic surgeon on his research foundation, Endometriosis Foundation of America. According to the foundation's website, "It can attach to any of the female reproductive organs including, but not limited to, the uterus, fallopian tubes, ovaries, uterosacral ligaments, the peritoneum, or any of the spaces between the bladder, uterus, vagina, and rectum. Endometriosis can also involve the bowel, intestines, appendix, or rectum."
As someone who has endometriosis in her stomach, bowel, and large and small intestine, I can tell you how unbelievably crippling this is.
7. You Can't Have Babies
Dr. Pari Ghodsi, a renowned expert in women’s health, board-certified, and active Fellow of the American College of Obstetrics and Gynecology tells Romper, "Although endometriosis is linked to infertility in some cases, having endometriosis doesn't necessarily mean you will be unable to conceive."
8. Endometriosis Only Impacts Women
While endometriosis is often referred to as a "women's disease" and/or a "women's health issue," it impacts trans men and other non-binary individuals. In other words, it's not just a problem for individuals who identify as cis-female. Many trans individuals have shared their stories and experiences with endometriosis, and men who have been treated with large doses of estrogen therapy can develop endometriosis, according to a report published in the International Journal of Urology.