The following was written by NPWH Board of Directors Chair Aimee Chism Holland, DNP, WHNP-BC, FNP-C, FAANP, and April Love, MSN, RN, RNC-OB, CNE
Have you ever looked at the statistics for endometriosis? They are most impressive in all the wrong ways. One in every 10 women of reproductive age is likely to experience endometriosis. Endometriosis occurs when the uterine lining grows outside of the uterus, and can lead to adhesion formation. As a result, scar tissue causes painful, sometimes debilitating, menstrual cramps. The number of ‘implants’ and depth of invasion create varying degrees of symptomatology and led to a spectrum within the disease ranging from asymptomatic to debilitating. While many women significantly struggle to find answers for why they experience such intense pain, menstrual irregularity, and infertility, surprisingly, most are unaware of their symptomatic connection to endometriosis.
We recently stumbled across an endometriosis “success” story from one of our co-workers that deserves to be shared. Our co-worker is young, enthusiastic, and undeniably bright. She has her PhD degree in nursing and has been an RN for many years. She is also a dedicated gym-goer who seems to have an unlimited energy supply. A self-proclaimed “lucky one,” Dr. Bray was diagnosed with endometriosis at a reasonably young age and started receiving treatment as a teenager. She is lucky because according to the North American Endometriosis Association Survey (NAEAS), there is a nine-year delay between the time a woman seeks help and is diagnosed with endometriosis.
The delay is often related to the navigation process. It takes time, patience, and diligence to make this diagnosis. Open communication with your healthcare provider is an extremely important initial step. Second, the healthcare provider has the challenging job of connecting the reported symptoms to endometriosis. Then, there needs to be a willingness to explore endometriosis as a diagnosis. To officially diagnose a patient with endometriosis, a laparoscopy procedure is required, allowing a gynecologist to view and remove endometrial adhesions.
After diagnosis, the patient and provider work together to form a plan that provides optimal quality of life and also keeps in mind the individual’s long-term needs and goals, which may include 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 uncertain. While there are treatment options available, including medications and/or surgical procedures, 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 Dr. Bray, she has had success managing her endometriosis with Lupron (leuprolide acetate), a chemotherapy drug. Lupron shuts down the pituitary gland’s production of estrogen, thus creating a medical menopause and effectively “starving” the endometrial lesions on the uterus. The results include a relief of pain and other associated symptoms commonly experienced by individuals diagnosed with endometriosis. 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. Therefore, it is essential that women understand the importance of a reliable contraception method while using it.
One win in this battle is the growing number of conversations in recent years seen on television and social media encouraging women to tell their healthcare providers about their symptoms. This healthy dialogue empowers women to speak up and speak out about their experience with endometriosis to support earlier diagnosis and symptom management. However, there is still a lot of work to be done to educate the general public.
How do we ensure faster diagnosis to improve quality of life and, if a patient priority, minimize potential reproductive complications? What treatment best reduces the chronic pain women suffer? We do not have all the answers yet, but we can advocate for everyone with endometriosis by bringing awareness and encouraging compassion for those who endure this condition every day.
Endometriosis is more than “just a bad period,” and it deserves to be explored and acknowledged. We encourage everyone reading this blog to take that next step toward awareness. Talk openly with family, friends, and co-workers about endometriosis. Most importantly, remind women to routinely make an annual appointment for a well-woman visit and to share signs and symptoms of concern with their healthcare providers.