Creating community to support community: Empowering adolescents with heavy menstrual bleeding at the EAGER Clinic

Menstrual bleeding is a natural bodily function for many people, but periods can feel embarrassing, to be discussed in whispers or not at all, especially among adolescents. This stigma of secrecy and shame presents a considerable barrier that may prevent young people from distinguishing between normal menstrual bleeding and signs of a more serious health condition.

For many people with periods, menstrual bleeding is uncomfortable. The symptoms — cramping, fatigue, acne, headache, bloating, diarrhea, depression and anxiety, among others — can interfere with school attendance, sports participation and other important life events for young people. When physical discomfort combines with stigma, “that time of the month,” can become difficult to navigate for adolescents and caregivers alike. 

For young people just beginning to experience periods, understanding and establishing what is normal in their bodies is crucial. But for those with heavy menstrual bleeding — classified as bleeding that lasts longer than seven days, passing clots larger than a quarter or leaking through pads and tampons that require a change every two hours or more — the shame, discomfort and uncertainty about what is normal and what is not can lead to silence and isolation. 

That silence can have major consequences when menstrual bleeding becomes excessive, crossing into hematologic conditions that require additional care. Providing that additional care for the young people of Memphis and surrounding communities led hematologists at St. Jude Children’s Research Hospital to develop a more holistic approach.  

Undetected heavy menstrual bleeding: A precursor for iron-deficiency anemia

“Most people don’t understand how debilitating heavy menstrual bleeding can be, and sometimes adolescents feel like they can’t talk to other people about it,” says Nidhi Bhatt, MD, Department of Hematology. “Sometimes they just don’t feel comfortable talking about it, and that could be one of the major reasons why heavy menstrual bleeding goes undetected for so long.”

Experiencing a menstrual cycle with heavy bleeding can lead to significant blood loss. Continual blood loss inhibits the body’s ability to replenish its store of iron, an essential mineral needed to create hemoglobin — a protein in red blood cells that carries oxygen to every part of the body. Without enough iron in the body, iron-deficiency anemia (IDA) can develop, causing fatigue, headaches, dizziness, increased heart rate and pale skin. 

Normally, people with IDA can boost their iron and increase hemoglobin production by taking iron supplements and eating iron-rich foods, such as meat, seafood, legumes, leafy greens and berries. However, when hemoglobin rates drop dangerously low, hospitalization and intravenous iron or packed red blood cell (PRBC) transfusions are required. 

Increasing and stabilizing hemoglobin production for adolescents with IDA is imperative because their bodies are still progressing through key developmental stages.

Treatment gaps for adolescents with heavy menstrual bleeding and iron-deficiency anemia

Bhatt and her hematology colleagues were accustomed to receiving referrals for adolescents with heavy menstrual bleeding and severe IDA. 

Bhatt recalls seeing close to 45 patients a year with such symptoms before the COVID-19 pandemic, but after 2020, the numbers almost doubled. Adding to the concern, the St. Jude Hematology Clinic was also seeing adolescents whom they previously treated for IDA returning with dangerously low hemoglobin levels. To understand why, the St. Jude Hematology Clinic team examined clinic data from 2019 to 2021 and noticed alarming trends.

“We were trying to investigate what was going on and why we were seeing these increased numbers,” says Bhatt. “For those whose iron-deficiency anemia we were not able to correct, which was about 18%, we wanted to understand what other underlying issues could be contributing factors.”

As the team dug deeper, they found the reasons to be multi-faceted. The first significant gap the team identified was a lack of obstetrics and gynecology (OBGYN) specialists willing to see pediatric patients in Memphis and the surrounding communities. While there are a few, the wait to see them ranges from six to nine months. 

“As hematologists, we were treating iron deficiency anemia by giving oral or intravenous iron,” says Bhatt. “But if the patient continues to experience heavy menstrual bleeding, we have to reduce the bleeding through gynecological care.”

The team found other factors were also driving patient referrals to St. Jude, including underlying bleeding disorders, inadequate nutrition and barriers to care. With multiple gaps in care to address, the team knew the solution did not exist within current clinical frameworks. 

So, they created their own. 

A multidisciplinary approach to menstrual care

The Empowering Adolescents with Gynecology and Hematology Resources and Care (EAGER) Clinic began seeing patients at St. Jude under a newly designed clinical workup centered on community and multidisciplinary care.

Building an entirely new clinical framework of holistic care required a novel approach. Katrina Pennington, RN, Department of Clinical Logistics, remembers the early planning days of the EAGER clinic. 

“Step one was identifying what we wanted: consistent treatment across clinicians and a workup that eliminated unnecessary tests. Once we outlined that, we began building the team for the EAGER clinic,” says Pennington.

Bhatt became one of the clinic’s hematology physicians along with Rohith Jesudas, MBBS. Pennington led logistical efforts as the nurse care coordinator and consulting physician Owen P. Phillips, MD, signed on to provide the much-needed gynecological care for adolescents referred to the EAGER clinic.

From there, efforts turned to nursing and operations coordination to ensure the appropriate resources, including time and space, were available for the one-day clinic to occur each month on the Hematology floor at St. Jude. Because EAGER’s holistic approach requires patients to meet with specialists across multiple disciplines, the team tries to make the most of their time with each patient on appointment days.

Phillips, Bhatt and Pennington stress how important it is to have gynecology, hematology and nursing providers in the same room at the same time during clinic appointments. “We will often see the patient at the same time, so the family hears the concerns and plans from a unified voice,” says Phillips. “Few health care systems can afford to have an expert pediatric hematology team and a dedicated gynecologist seeing patients in a stand-alone clinic. We all feel very grateful to be able to provide this level of care.” 

That level of holistic care extends beyond clinical hematology and gynecology to encompass each adolescent’s mental, emotional and social well-being.

“Clinical care is only half the medicine. I can create the best treatment plan possible, but if there are barriers, such as access to transportation, which ultimately affects access to care, I need help figuring out how to create treatment plans that best fit the patient and work for the family,” says Bhatt.

Social well-being and nutrition as aspects of care for adolescents in the EAGER Clinic

When an adolescent comes to St. Jude for their first appointment at the EAGER Clinic, Shyranda Jones, LCSW, Department of Social Work, walks into the room with a blank piece of paper. 

That blank piece of paper signals to the adolescents that there is no script or agenda, just a curious person in front of them who wants to learn about what they are experiencing.

“My style is not to check a box, ask a question or fill in a blank. I see who they are, where they go to school and who takes care of them. In this conversation, I assess social determinants of health, barriers to appointments and to understanding. I give them space to say how they’re feeling. How are they doing?” says Jones. 

Listening to them is not just about assessment; it is about empowerment. 

Bhatt stresses that empowerment has been a driving force for the EAGER Clinic since the start. All care team members work toward empowering individuals to know their bodies and make the right decisions for themselves. To achieve this, the clinic educates adolescents and their families on the importance of iron-rich nutrition and what a normal menstrual cycle looks like for people with periods. 

Eagerly moving forward

In its first two years, 90 adolescents received treatment and support at the EAGER Clinic to address heavy menstrual bleeding and iron-deficiency anemia. Of those treated within the first year, 25% were diagnosed with an underlying bleeding disorder, such as Type 1 von Willebrand disease, which would have otherwise gone undiagnosed without EAGER’s multidisciplinary approach to diagnosis and treatment. 

Now in its third year, the clinic team is focused on creating more educational materials for referring physicians. The aim is to help providers understand when they can direct treatment themselves or when a referral to the EAGER Clinic is needed. 

“We are working on partnering more in the community, specifically with school nurses in case some of these adolescents do not have primary care and to increase educational opportunities around what a normal period is,” says Bhatt. “All of our patients come from our community. That was our goal from the beginning: to fill that gap in community care because these girls were not getting the comprehensive approach they deserve. With EAGER, now they are.”

 Editor's note: The late Vanessa Howard, MSN, FNP, RN, Center for Advanced Practice, provided foundational work in the establishment of the EAGER Clinic. Her evaluation of clinical hematologic practice allowed EAGER to grow into the multidisciplinary clinic it is today.