Müllerian ducts must undergo specific changes during fetal development to form the mature female reproductive tract. When they do not properly develop, Müllerian anomalies may result. Some anomalies are present at birth, but many are not discovered and addressed until much later in life. Duke’s Müllerian Anomalies Program brings together a multidisciplinary team representing pediatric, adolescent, and adult medicine to offer patients the full spectrum of care from proper diagnosis to innovative treatments. 

“These conditions require lifespan care,” says Cassandra K. Kisby, MD, MS, urogynecologist. “Our program, the Genitourinary Congenital Anatomic Differences Program, also called the GU CARES Program, has the level of expertise to offer patients options that optimize long-term health, function, and quality of life.”

For Müllerian anomalies discovered prenatally, expecting parents may have consultations during pregnancy to understand the severity of the condition and potential corrective interventions. “Sometimes we recommend waiting on surgical correction, or patients require multiple surgeries over time. That’s why it’s critical to have multiple specialties working together to consider the best option for the patient now and in the future,” says Kisby.

Different concerns and symptoms arise as a child develops through adolescence and adulthood, as they consider fertility, sexual function, and family planning. With collaboration between urologists, colorectal surgeons, and pediatric and adolescent gynecologists, the team reviews each case to determine the safest and best treatment pathway. This can include vaginal dilation, vaginoplasty, vaginal septum surgery, uterine surgery, urinary system surgery, and pelvic floor physical therapy. 

“Often in these cases, patients don’t expeditiously get answers for why they have pain until they come to a provider who has extensive experience with diagnosing and treating it,” Kisby says. “It’s important for providers to know to look for issues with the kidney, bladder, and urethra, which can form congenitally along with the Müllerian anomaly.”

The related conditions that Duke experts treat include: 

• Vaginal anomalies: vaginal agenesis (absence or partial absence), vaginal septum (longitudinal, transverse, or oblique)
• Uterine abnormalities: uterus didelphys (double uterus), arcuate uterus (curved), unicornuate uterus (one-sided), bicornuate uterus (heart-shaped), septate uterus (partitioned), absent uterus
• Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome: an undeveloped uterus and upper vagina with external genitalia that appear normal
• Obstructed hemivagina and ipsilateral renal anomaly (OHVIRA): including uterus didelphys, unilateral low vaginal obstruction, and same-sided absence or underdevelopment of a kidney
• Complex anomalies: cloacal exstrophy, bladder exstrophy, disorders of sex development (congenital adrenal hyperplasia, androgen insensitivity syndrome, sex chromosomal disorders)

A large focus of the program is managing the psychological impacts Müllerian anomalies and related issues have on patients. “They can be hard to process and manage as a young person. One of the first things we communicate to patients and their parents during our initial consultations is that they didn’t do anything to cause this; it’s fairly common. For example, vaginal agenesis occurs in one in 5000 births,” says Kisby.

The program works with colleagues from social work and psychology to extend resources for patients to grasp how their conditions affect them and how they will cope. Kisby says the team provides psychological safety to talk about it, find acceptance, and create a path forward that patients feel comfortable with.

Duke Fertility Center’s multidisciplinary team and cutting-edge clinical laboratory provide the highest possible level of care for patients with reproductive and endocrine concerns. Fertility experts such as Sarah M. Moustafa, MD, a reproductive endocrinology and infertility specialist, treat patients with a full spectrum of conditions affecting fertility, including uterine fibroids, endometriosis, polycystic ovary syndrome, recurrent miscarriages, and other hormonal problems. The team has further expertise in fertility preservation and oncofertility, supporting patients through fertility considerations throughout cancer treatment. 

“Our patients benefit from integrated care throughout the entire Duke system. We have subspecialty experts to best manage patients with complex medical histories that require coordination with specialists and often need high-risk maternal-fetal medicine consultation and care as well,” says Moustafa.

The fertility team is also committed to clinical research. “As a top-tier academic medical center and research facility, we offer patients more treatment options through clinical trials and the latest evidence-based standards of care,” says Moustafa. “We also work closely with our colleagues in genetics. More and more patients are interested in understanding their genetic risks and want to understand what these risks mean for family planning.”

Many Duke Fertility Center physicians are involved in clinical research studies to advance the field’s understanding of reproductive and endocrine disorders and translate breakthroughs into new treatments for patients. 

The Duke University School of Medicine Division of Reproductive Endocrinology and Infertility is actively studying: 

• Pre-treatment with GnRH antagonist for patients with endometriosis
• Effects of high and low levels of progesterone on the endometrium
• PCOS and fatty liver
• Comparing the endometrium of fertile patients with those with recurrent pregnancy loss, recurrent implantation failure

Moustafa emphasizes that infertility care must be personalized. “Each patient has different needs and goals, as well as personal experiences and struggles. It’s our job to deliver evidence-based care that is also sensitive to the individual.”

Fertility challenges can have a psychological impact on patients and their families. “There can be a natural stress and strain with infertility, pregnancy loss experiences, and fertility preservation,” says Moustafa. “Psychologists are critical team members. They support patients along their unique journeys, which is very important and impactful to their overall well-being and treatment success.”

Jennifer Gilner, MD, PhD, Maternal-Fetal Medicine specialist, has led Duke’s Placenta Accreta Care Program since 2016. Today, it’s the most comprehensive program of its kind in North Carolina. The multidisciplinary team’s evidence-based screening and treatment protocols have fostered a destination program with superior patient outcomes. 

“Our program expanded with two additional faculty members and a nurse navigator, who helps our patients with the complex care process of this diagnosis,” says Gilner. More team members increase the capacity to manage more placenta accreta spectrum (PAS) cases, as well as implement standardized protocols for screening, diagnostics, and patient management. 

“Getting an accurate PAS diagnosis as early as possible allows us to risk-stratify the patient and create a customized care plan that reduces serious risks to mother and baby at the time of delivery,” says Gilner.

Nationally, between 40% and 50% of accreta spectrum cases are not suspected, which leads to more bleeding and other complications at delivery. “The greatest opportunity for impact is recognizing patients’ risk factors and referring for screening with specialized imaging by 26 weeks. Patients have significantly better outcomes if we monitor them and plan ahead,” says Gilner.

Major risk factors for developing an abnormal relationship between the uterine lining and the placenta include: 

• Having placenta growth near a prior uterine scar, most commonly from a prior cesarean
• Any placenta growth in an abnormal location (e.g., previa) or near an area of prior uterine procedure (e.g., cesarean, hysteroscopy, or D&C)

“If patients’ first or second trimester routine ultrasounds reveals a placenta low in the uterus, or near or covering the cervix, and they’ve had prior uterine surgeries, we strongly recommend referring to us for a consultative ultrasound,” says Gilner. 

Gilner helped develop an evidence-based protocol for diagnostic ultrasounds at Duke. The ultrasound takes more time, capturing images and specialized views that aren't part of a standard anatomy ultrasound. 

Current data suggests that the incidence of severe maternal morbidity of patients with PAS is higher than other serious conditions in pregnancy, such as pulmonary hypertension. “We can lower morbidity rates if we identify risk factors and plan for a safe delivery,” says Gilner.

“It’s widely published that delivery at a prepared center with an experienced team improves outcomes,” says Gilner. “We routinely get referrals from Georgia, Virginia, all over North Carolina, and states even farther away.”

Duke’s Placenta Accreta Care Program achieves lower severe maternal morbidity rates compared to national averages, including blood loss and likelihood of transfusion. The national rate for hemorrhage that requires transfusion is 46.9%, while Duke’s published rate of transfusion for scheduled delivery cases is 14.8%.

Duke's protocols to support exceptional outcomes include:

• Partnering with interventional radiology colleagues to incorporate prophylactic multivessel embolization in severe accreta cases, reducing blood flow to surgical fields after delivery
• Implementing a comprehensive hemorrhage management protocol 
• Having a dedicated obstetric anesthesia group
• Having a well-established transfusion team and stocked blood bank 

Considering that 30 to 40% of patients with accreta require urgent or unscheduled delivery prior to their intended delivery date, it’s important for care teams to have standardized systems and mobilize quickly. “Our specialists are available 24/7,” says Gilner.

After a consultative ultrasound, Gilner’s team stratifies patients by level of risk to provide the most clinically appropriate recommendations. “Traveling to our center for delivery may be hard for some patients, so we only make that recommendation if the risk of needing a specialized surgical team is high. Patients with lower risks can often deliver with their local obstetrician. We can collaborate with them to develop a safe delivery plan,” says Gilner. 

The program also maintains as much normalcy as possible during the birth process for patients by including partners in the delivery room and having mothers awake during delivery.

Common situations where patients without arthritis might benefit from hip preservation include hip stiffness or pain:

• while getting into or out of a car
• which prevents them from sitting for extended periods at school or work
• when rolling over in bed or that prevents sleep
• when going up or down stairs
• when lying on the side of the hip
• during intercourse

Hip instability, popping in and out, chronic dislocation, and pelvic pain that doesn’t respond to other treatments are other common reasons to turn to hip preservation. For children, the first presentation is often a labral tear that leads to discovering dysplasia, says hip specialist Amy L. Behman, MB ChB, PhD.

Additionally, Behman says, “There’s a lot of evidence coming out that there’s a high risk of hip injury during pregnancy and delivery. If you’re seeing a lot of pain postpartum, that would be a reasonable referral.” Behman also says that any family or personal history of hip dysplasia, any condition that required a brace, or being born breech or as a first-born female are also important risk factors in a patient’s history. 

Patients who develop hip pain during pregnancy or delivery and who do not recover from that pain after the postpartum period should consider being evaluated for hip problems. Pregnant patients who have a family history of hip dysplasia should also consider having their child screened.

Patients and physicians may not recognize hip pain symptoms’ severity initially. “It’s easy for young people to not realize this type of pain is not normal if they’ve had it a long time,” Scott says. “It’s important not to ignore symptoms early on.”

Behman agrees that early treatment is key to hip preservation. “With early treatment, we are able to protect the joint and cartilage to better distribute the forces going across the hip joint. We can minimize or prevent cartilage wear that would lead to hip osteoarthritis,” she says.

For PCPs, a typical flexion, adduction, internal rotation (FADIR) test is the first step to assess hip problems. However, even with tests and imaging, signs of hip impingement may be difficult to identify. “As a hip preservation specialist, I match clinical exam symptoms to signs in imaging that may be very subtle,” says Scott. “Hip conditions can present in a wide spectrum of ways. Even providers who have been trained to recognize hip dysplasia or impingement can miss these signs — it’s very common. If a patient’s radiograph looks normal, but they continue to have pain, even if a provider hasn’t reached a diagnosis, we encourage referrals.”
 

Duke family medicine physician Andrea Dotson, MD, MSPH, IBCLC, FAAFP, was among the first cohort of 103 physicians across the U.S. and Canada to achieve a new certification from the North American Board of Breastfeeding and Lactation Medicine (NABBLM) in October 023.

“For the first time ever, we have board certification, which is a great way of recognizing that there is a need for physician-level care of breastfeeding infants and lactating parents,” says Dotson. “This is real, evidence-based medicine we’re practicing and providing our patients.”

As a family medicine physician, Dotson has a long history of providing obstetric, gynecologic and infant care. Yet, it was her own personal experience that led her to pursue additional training in lactation and infant feeding. “A lot of us walk into our own personal experience thinking this is something that’s a natural process and it’s very straightforward, but that’s not always the case,” she says.

Dotson completed the continuing education and training required to become an International Board-Certified Lactation Consultant (IBCLC), which was once the highest-level credential for healthcare professionals specializing in lactation. IBCLCs come from many backgrounds, from nursing and nutrition to speech therapy, and they offer comprehensive breastfeeding support and education related to latching, pumping, feeding schedules and proper positioning. They also can address common challenges that may arise, including breast engorgement and clogged milk ducts.

According to Dotson, there are many medical complexities that can arise before or during breastfeeding in both parent and infant that require care beyond that provided by an IBCLC and necessitate physician intervention. These include, but are not limited to:

• Low milk supply
• Complex nipple pain
• Post-mastectomy feeding
• Complications resulting from cleft palate or tongue-tie
• Risks associated with a parent’s medication regimen or pre-existing condition like HIV

Combining her medical background and lactation expertise with the more advanced NABBLM training, Dotson provides the full range of care for lactation complications, from counseling and diagnostics to medication management and treatment. She also collaborates with a vast network of skilled specialists at Duke, including surgeons, pediatricians, physical therapists, speech pathologists and others, to provide more advanced therapies that facilitate normal breastfeeding, such as cranial sacral therapy and frenotomy.

At every stage of care, Dotson works closely with IBCLCs and referring providers to ensure continuity and open communication. “Approximately 80% of my referrals come from IBCLCs directly, which means patients have already been optimized by someone who has a really important skill set,” says Dotson. “I strive to get patients to a point where they can return to their IBCLC or provider. I am always happy to collaborate. The goal is to utilize all the resources that are available so that we can best serve our patients.”

To receive optimal care, Dotson says lactating patients should be referred early. “Often, I'm seeing patients when it's really late. I end up being the last stop out of desperation, and that’s really challenging,” she says. “I'd rather see patients much sooner—as soon as you have a question you don’t know the answer to or you have a patient with a risk factor, even in the prenatal period.”

Dotson stresses that there’s more the medical community can do to help ensure lactating parents have the resources and information they need to breastfeed successfully. “If you’re seeing a patient in the OB, pediatric or internal medicine clinic … anyone can refer,” she says. “The responsibility falls on all of us to support the feeding experience.”

Duke’s Department of Obstetrics and Gynecology has several specialists with advanced expertise in treating menopause as certified by the Menopause Society. They can offer novel treatment options as well as in-depth counseling to patients with complex histories and needs.
 
These specialists welcome referrals of patients who have complicating conditions such as cardiovascular risk factors (including hypertension or a history of blood clots or stroke), chronic pain, osteoporosis, anxiety, advanced age, or a history of breast cancer. They also welcome patients who might benefit from hormone therapy but are reluctant to try it. 
 
Practitioners earn the credential by passing an exam administered by the Menopause Society (formerly known as the North American Menopause Society) and fulfilling yearly educational requirements, according to MargEva Cole, MD, an obstetrician-gynecologist at Duke. 
 
“The certification reflects the extra knowledge and expertise that come from continual learning through formal reading, education, and attending conferences, as well as many years of learning on the job that every woman has a different set of symptoms and concerns,” Cole says. She finds great value in an annual day-long update seminar at the Menopause Society meeting that reviews the latest findings in menopausal endocrinology, impact of co-morbidities, treatment options, and more. 

The great changes in the perception of hormone therapy highlight the need for this kind of study, according to Jennifer Howell, MD, another certified obstetrician-gynecologist. A menopause specialist can help both patients and primary-care doctors who are confused by evolving and apparently conflicting recommendations. 
 
“In the 1990s, we kind of considered hormone therapy the fountain of youth and prescribed it to everyone,” Howell says. “When the Women’s Health Initiative study came out in the early 2000s, it seemed to have more risks than benefits. I have continued to follow the data and to prescribe it to certain patients based on a nuanced understanding of each individual’s situation.”
 
“A lot of what we do is counseling on ways to approach your menopausal symptoms and laying out the options,” Cole says. “Sometimes the patient has a long list of questions, and it can be  difficult to untangle how much their symptoms relate to menopause rather than a different concern. We have more time than another provider might to lay out the options and let patients feel empowered to make their choices.” 
 
An example of this kind of patient might be a woman with menopausal symptoms as well as chronic pain or fibromyalgia. Cole says that such a patient might benefit from a neurologic medication like gabapentin, which can help them with hot flashes, sleep, and chronic pain. 
 
Or a patient with a history of hormonally sensitive breast cancer who has hot flashes, palpitations, and difficulty sleeping because of anxiety about their breast cancer diagnosis could benefit from a low dose of a medication also used for anxiety or depression, such as an SSRI or SNRI. “Sometimes we can kill two birds with one stone,” Cole says.
 
Howell adds: “I keep up to date on new products that your average OB-GYN might not have heard of.” She is open to prescribing off-label drugs like testosterone or new alternatives, such as Veozah (fezolinetant), a nonhormonal treatment of moderate-to-severe vasomotor symptoms.

To enhance the expertise and patient care options for children and adolescents, Duke Health’s gynecology team welcomed Tara Streich-Tilles, MD, MPH. Streich-Tilles brings specialized training in the medical and surgical care of children, adolescents, and young adults with gynecologic concerns, and brings comprehensive, inclusive, and impactful care to the community. 
 
“The health of this patient population is important and Duke is committed to growing its presence in this area,” says Streich-Tilles. “I’ve appreciated the warmth I’ve received, as well as the integrity and innovativeness of the Duke community.”

Untreated gynecologic concerns can negatively impact health and development, and Streich-Tilles says some patients feel apprehensive to seek expert care in this area. In this specialty, it’s particularly important for patients to have the information they need to make healthy decisions, and involve parents and caregivers in the education process.  
 
“I start each visit by getting to know the patient — what they enjoy doing, who is a part of their family, and what they are passionate about. This helps us build comfort and trust.” 
 
Streich-Tilles serves patients from birth to young adulthood and offers high-efficacy therapies for a wide range of gynecologic conditions and reproductive health concerns specific to children and adolescents, including:

• Abnormal pubertal development
• Vulvar dermatoses
• Adnexal masses
• Menstrual disorders
• Dysmenorrhea
• Chronic pelvic pain
• Endometriosis
• Complex contraception
• Müllerian anomalies
• Differences of sex development
• Ovarian insufficiency
• Reproductive care for children, adolescents, and young adults with cancer, and cancer survivors

Streich-Tilles collaborates with community providers, specialists, and subspecialists within and outside Duke, including pediatrics, family medicine, gastroenterology, urology, urogynecology, hematology, endocrinology, oncology, surgery, and more.
 
“I have great respect for my colleagues who help patients manage their reproductive health, and I can serve as a supportive team member for second opinions or for patients with more complex needs,” says Streich-Tilles.
 
Within Duke, Streich-Tilles is collaborating with various subspecialties and programs to integrate a higher level of gynecologic care, including fertility preservation, into the treatment and disease management of many conditions, such as cancer, urogenital conditions and anorectal malformations, endocrine disorders, and others.

In a recent study published in BJOG: An International Journal of Obstetrics & Gynaecology, gynecologic surgeon Arleen H. Song, MD, MPH, OB/GYN resident Jenny Wu, MD, and their colleagues uncovered how women perceive the current state of endometriosis care by taking a closer look at TikTok.
 
“Women find communities online where they can share their diagnosis and the way their symptoms have impacted their lives. This connectivity is important because endometriosis is underdiagnosed and often stigmatized,” says Wu.
 
Wu and fellow researchers found that endometriosis was a high-traffic topic on TikTok, with around 1.4 billion views. “We wanted to know why so many people were interested in this topic, what they were saying, and why they were turning to TikTok instead of a healthcare professional,” Wu adds.

Researchers analyzed the top 100 TikTok videos that discussed endometriosis, 75% of which highlighted a personal experience with the disease, finding:

• Of videos discussing endometriosis symptoms, 50% focused on dysmenorrhea, with many emphasizing the fact that painful periods are not normal.
• Around one-quarter of the videos signaled a distrust in healthcare. A common complaint was a perceived delay in diagnosis by providers.
• In videos discussing treatments, surgery had a much more favorable response than hormonal treatments, and around 12% of videos highlighted alternative treatments, such as dietary changes and supplements.
• Infertility was the key topic in 24% of videos, with many of those videos focused on in vitro fertilization.

“Healthcare providers can use these findings to develop better trust and rapport with patients,” says Song.

The study findings have influenced the way Duke specialists care for women with endometriosis in the following ways:

Starting a conversation

Wu says many patients with endometriosis have some ideas about their condition and treatment before they see a physician. “Focusing on what patients have seen online is something that I have made part of my routine practice because I think patients feel validated. Asking what they know, what they’ve found helpful, what their goals are really helps to set the tone,” adds Song. “Many patients feel they have not been heard, and establishing trust, communication and rapport at the beginning is essential to finding the best treatment for the patient.”

Sharing clinically sound information

Misinformation can fuel negative opinions on common treatments for endometriosis. Hormonal treatments, in particular, are misrepresented, says Wu. “There is this common idea that birth control will make you gain weight or impact your mood.” In addition to educating patients on the side effects of the birth control, Song says she informs patients on their efficacy. “A lot of patients are skeptical because they’ve tried birth control and are still experiencing pain, but when hormonal therapy or cycle control is presented within a bigger treatment plan, it’s often better received.”

Building confidence and trust

Because endometriosis is difficult to diagnose and treat, many women experience frustration while seeking effective solutions to manage chronic and painful symptoms. This frustration can become distrust when they feel they’re not being heard or receiving appropriate care. Through communication, collaboration, and comprehensive, proactive care, Song says physicians can build confidence and trust.

To ensure a safe, predictable pregnancy for patients with heart disease, a team of Duke Health specialists from anesthesiology, cardiology, and maternal-fetal medicine collaborate to provide comprehensive, personalized care through conception, delivery, and post-partum follow-up.

The Duke Pregnancy Heart Center offers convenient care from experienced physicians that allows patients to meet with several clinicians during a single visit, helping ensure that comprehensive care is planned and coordinated safely.

Experienced maternal nurse navigators establish relationships with patients and families to help simplify appointments, schedule follow-up care, and provide an accessible contact point for questions or concerns.

Jerome J. Federspiel, MD, PhD, a Duke maternal-fetal medicine specialist, leads a monthly planning conference created to coordinate planning for complex cases as well as proactive management for each stage of a pregnancy and delivery.

“Pregnancies involving patients with heart disease often have additional risks compared to those without heart disease,” says Federspiel. “We know that careful planning during pregnancy is essential. For this reason, our team discusses every patient during a monthly review throughout the pregnancy to monitor progress and, of course, more frequently when necessary.

“We want to make the delivery and postpartum period, which is the highest risk time for complications of some kinds of heart disease, as safe and happy as possible.”

During the past three years, a clinic created to treat cardiovascular conditions in women who are pregnant has become a fast-growing partner of Duke Maternal-Fetal Medicine Division (MFM) and the Pregnancy Heart Center.

Cary C. Ward, MD, an adult congenital heart disease specialist who occasionally treated pregnant patients as a part of her practice, now works closely with the Federspiel’s group. Her patients often presented with complex, challenging conditions, Ward says, which triggered her interest in addressing cardiovascular risk factors in a more effective manner. The combined program was launched in September 2022 with the addition of Mary-Louise Meng, MD, who helped form a third pillar of care with her anesthesiology partners. Ward and Meng join Federspiel in the monthly care planning sessions.

“Some patients in my congenital practice have mechanical heart valves and wanted to become pregnant,” says Ward. “These individuals required very specialized care and led to our interest in developing a program for women with cardiovascular disease and pregnancy.”

One contributor to the fast growth of the center is the fact that the multidisciplinary approach helped patients with immediate health risks, Ward says. The number of active patients cared for by the interdisciplinary team has tripled since 2022.

But the demand for comprehensive cardiac care before and during pregnancy remains high, Ward says. She has personally witnessed the medical challenges facing pregnant women in the United States. “Among nations of the same socioeconomic profile, the statistical risks associated with pregnancy are significantly higher in the U.S. than in other countries,” Ward says.

These risks have continued to rise in recent years. Since the creation of the CDC’s Pregnancy Mortality Surveillance System, the number of reported pregnancy-related deaths in the United States increased from 7.2 deaths per 100,000 live births in 1987 to 32.9  deaths per 100,000 live births in 2021. Among African American women who are pregnant, the maternal mortality rate is twice as high, a statistic that highlights the health care disparities in this field.

The reasons for the increase in overall maternal mortality are multifactorial, but the experience at Duke has convinced Ward and her colleagues that pregnant women need proactive care as soon as possible.

“Women are becoming pregnant later in life, and have higher rates of diabetes, obesity, and elevated blood pressure,” Ward adds. “These risk factors can contribute to hypertensive disorders of pregnancy such as preeclampsia, all of which are associated with a higher risk of maternal death.”

The pregnancy heart team is also active in research to improve the care of patients with cardiac disease. Duke physicians and nursing colleagues are part of the leadership team for a statewide quality initiative to improve the care of patients with pregnancy-related heart disease across North Carolina.