Endometriosis Awareness Month, By April Love

March is endometriosis awareness month, a time to raise awareness of a condition affecting millions of women worldwide. In recognition of endometriosis awareness month, UAB School of Nursing Instructor April Love, MSN, RN, RNC-OB, CNE, shares her expertise on this common condition, its symptoms, treatments and future challenges. Love’s career has focused on obstetric nursing, primarily working in labor and delivery and mother-baby units. She joined UAB faculty full time in 2017.

UAB School of Nursing Instructor April Love, MSN, RN, RNC-OB

1 in 10.

When you start exploring the statistics surrounding endometriosis, they’re impressive — in all the wrong ways. One in every 10 women you encounter is likely to experience endometriosis, and most of us don’t even know. The fact that women go through the symptoms of endometriosis — the pain, the complications — often silently is a testament to how strong these friends, wives, daughters, employees and mothers are, but it’s also a commentary on how we have yet to fully validate this diagnosis.

Endometriosis occurs when a lining similar to that of the uterus grows outside of it, leading to adhesions that attach to the abdominal wall. As a result, scar tissue causes painful, sometimes debilitating, cramping — imagine someone repeatedly clamping down on your stomach with strong metal plyers — as well as heavy or irregular bleeding. While other complications can occur, pain and infertility top the list. And even though endometriosis is a relatively common condition, those women with it often face delayed diagnoses, limited treatment options and other challenges.

Even as a nurse working with a predominantly female population, I had limited knowledge of endometriosis. My exposure was limited — I’d come across a Facebook post, or it would come up in a conversation with close friends. When I started working on this blog, I stumbled across an endometriosis “success” story from one of my coworkers.

Dr. Leigh Ann Bray and I have worked together at the UAB School of Nursing for the last few years as I transitioned into my role as an instructor and she completed her PhD and joined the faculty. She’s young, enthusiastic, undeniably bright — everything you want in a co-worker. She’s also a dedicated gym-goer who seems to have an unlimited energy supply. So, when I told her I was exploring endometriosis — its impact, what it means to women and the general awareness of the diagnosis, I was surprised when she shared her story.

A self-proclaimed “lucky one,” Leigh Ann was diagnosed reasonably young and began receiving treatment at 18 years old. And she is lucky. According to the North American Endometriosis Association Survey (NAEAS) of 4,000 members, they found a nine-year delay between the time the woman sought help to the time she was actually diagnosed.

This delay often comes as women and their care providers navigate the symptoms and diagnostic measures to determine whether or not the cause is endometriosis.

Diagnosis sometimes isn’t easy and it’s invasive. First, the woman has to have a provider believe her symptoms are more than just a “bad period.” Open communication with your health care provider is an extremely important first step. Then, the provider has to connect the reported symptoms, which can be similar to those of other conditions, including pelvic inflammatory disease, ovarian cysts or irritable bowel syndrome to endometriosis and be willing to explore endometriosis as a diagnosis. To officially diagnose a patient with endometriosis, she has to undergo a laparoscopy, an outpatient surgery during which a gynecologist makes a small incision in the abdomen to insert a camera, or laparoscope, which allows them to view possible adhesions and be able to call endometriosis by its name.

After diagnosis, the patient and provider work together to come up with a plan that works but also keeps in mind her long-term needs and goals, including pregnancy. Because women usually experience the symptoms and complications of endometriosis during their child-bearing years, the implications of treatment on fertility and pregnancy can be scary, because while there are solutions, including medications and/or surgeries, to help mediate pain and other symptoms, those solutions can negatively impact fertility, the health of a potential pregnancy or in other cases prevent a patient from being able to carry a child.

For Leigh Ann, she has had management success with Lupron (leuprolide acetate), a chemotherapy drug originally reserved for treating prostate cancer. Lupron shuts down the pituitary gland’s production of estrogen, creating a menopausal environment and effectively “starving” the lesions on the uterus to relieve pain and other associated symptoms. Sounds great, right? Actually, despite the growing popularity of Lupron for endometriosis symptom management, the National Institute of Health (NIH) and the Occupational Safety and Health Administration (OSHA) classify Lupron as a “hazardous drug” associated with major fetal anomalies when used in pregnancy. While the drug fixes one thing, it creates another potential issue.

One of the most positive things surrounding endometriosis today is that conversations regarding the condition have increased in recent years, encouraging women to tell their doctor about their symptoms, but there’s still a lot to work to be done.

How do we ensure faster diagnosis to improve quality of life and, perhaps, even minimize reproductive damage? What treatment best reduces the pain these women manage while supporting them to live their best, fullest lives? We don’t have all the answers today, but we can advocate for those we love and those we encounter every day by bringing awareness and encouraging compassion for those who suffer.

Endometriosis is more than “just a bad period,” and, it deserves more than our silence. This month, I encourage you to take that next step toward awareness. Let a woman you know care. Talking more openly and encouraging the women in our lives to talk openly with their doctors is a good first step toward better treatment options, earlier diagnosis and better quality of life.