Women’s Health NPs & National Endometriosis Awareness Month Advocacy Guide
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Endometriosis is one of the most common gynecological diseases, affecting at least one in ten women, yet it takes an average of seven to 12 years to diagnose. Many patients never receive a diagnosis, leaving questions about their health unanswered.
Endometriosis is a progressive disease that can impact the quality of life and, in many cases, cause infertility. Despite its prevalence, the disease remains under-researched, slowing progress in diagnosis and treatment options.
At present, there is no known cure, but raising awareness of the disease can promote earlier diagnosis and help patients get the right treatment before it has made a significant impact on their lives.
For National Endometriosis Awareness Month in March, learn more about how this disease affects women, how women’s health NPs can help alleviate this problem, and how to get involved in spreading awareness.
Nicole Hammond, CRNP, Gynecologic Oncology Center at Mercy in Baltimore
Nicole Hammond is an integral part of the Gynecologic Oncology Center at Mercy’s clinical team. She started out as a medical assistant at Mercy, but soon realized she wanted to take on a more hands-on role in patient care, obtaining an advanced nursing degree and certification from the American Association of Nurse Practitioners.
As a nurse practitioner, she works with patients and families to clearly and effectively communicate each step of the care process, including diagnoses, procedures, tests, and lab results.
Dr. Neil Rosenshein, MD, FACOG, Medical Director of the Ovarian Cancer Institute of Mercy Hospital in Baltimore
Dr. Rosenshein is the medical director of The Lya Segall Ovarian Cancer Institute at Mercy. He has devoted his career to advancing surgical techniques for female tract cancers and spreading awareness about women’s health issues. He is also an outspoken advocate for NPs as primary care practitioners.
Dr. Rosenshein developed The Gynecologic Oncology Collaborative, a network of Gynecologic Oncology Centers throughout Maryland, and in 2015, started the Women’s Health Symposium at Mercy Hospital to engage nurse practitioners and physician’s assistants about current trends in women’s healthcare.
In recognition of his efforts, the Neil B. Rosenshein, M.D., Institute for Gynecologic Care at Mercy was named in his honor. He continues to see patients at Mercy Medical Center.
Tamara Tobias, ARNP, WHNP, Clinical Manager at Seattle Reproductive Medicine
Tamara Tobias is a nurse practitioner supervisor at Seattle Reproductive Medicine with 25 years of experience in the field. She started out as an ER nurse in the military, where she developed an interest in women’s health and reproductive medicine, and eventually became a women’s health nurse practitioner and a leader in the profession.
She is active in the American Society for Reproductive Medicine (ASRM), currently serving on the Membership Committee, and helped develop the organization’s REI nurse certificate. She also recently headlined the launch of its new professional group for advanced practice providers interested in reproductive medicine, which she encourages recent graduates to join.
What is Endometriosis?
Endometriosis develops when the lining that normally grows on the inside of the uterus forms in other areas, such as on the ovaries, fallopian tubes, the lining around the pelvis, or even the rectum and intestines.
When this happens, the endometrial tissue has no avenue to exit the body as it would during a normal period, causing the tissue to build up. A hallmark of endometriosis is a chronic, sharp pain in and around the pelvis caused by scar tissue pulling or attacking nerves.
Other signs of endometriosis include:
- Pain during sex, bowel movements, urination
- Pain in the lower back or lower stomach
- Constipation and/or diarrhea
- Fatigue and/or lower energy
- Period irregularity, including frequency and flow
- Weight gain
- Mental health changes, such as depression and anxiety
“These women that go underdiagnosed … It impacts their entire lifestyle,” says Tamara Tobias, women’s health nurse practitioner and supervisor at Seattle Reproductive Medicine. “They just suffer in quiet with painful periods every month. [It can be] so devastating, they can’t even work when they’re on their menstrual cycles.”
Patients with endometriosis are estimated to lose an average of six hours of work productivity and five hours of home productivity each week due to the pain and discomfort they experience. The disease can also cause infertility, leading to social and family problems, financial strain, frequent doctor visits, and depression for some patients.
The American Society of Reproductive Medicine classifies endometriosis into four groups: minimal, mild, moderate, and severe. The stages indicate the location, extent, and depth of endometriosis; presence and severity of adhesions; and presence and size of cysts.
“Like a lot of disease entities, you want to be early in diagnosis, thus preventing having to put the patient through more extensive surgery or medical therapy that would be more intensive,” says Dr. Rosenshein, MD, a GYN oncologist at Ovarian Cancer Institute of Mercy Hospital in Baltimore. “You don’t want to wait until you have very advanced endometriosis.”
Tobias explains that the longer bleeding and the shedding outside of the uterus occurs, the more endometrial buildup you are likely to have.
“You can get more cysts and adhesions [over time], and those adhesions can lead to infertility…a lower egg count, and a longer time to achieve pregnancy,” she says.
The most reliable way to diagnose endometriosis is via laparoscopy—a minimally invasive surgery that uses a small camera to confirm the presence of lesions or cysts. During the same procedure, endometrial tissue can also be removed, alleviating pain and increasing the likelihood of preserving fertility. Some patients may have multiple laparoscopies over the years to remove endometrial tissue that has returned.
But many patients don’t receive treatment for endometriosis until the disease has already progressed. In some advanced cases, major surgery, such as a hysterectomy (removal of the uterus) or oophorectomy (removal of the ovaries), may be recommended to alleviate symptoms. But neither option is ideal, as both procedures have risks and disadvantages.
Researchers are currently working on a blood test for endometriosis, which would decrease the cost and risk associated with diagnosis, and help catch the disease in its early stages. But at present, laparoscopy is considered the best way to identify endometriosis.
According to a 2020 survey, an overwhelming three-quarters of endometriosis patients (75.2 percent) reported being misdiagnosed with another physical or mental health condition before getting a correct diagnosis, with an average delay of 8.6 years.
But why does endometriosis so often fly under the radar? And for such a long time? There are a few factors at play.
First, it can be difficult for healthcare practitioners to recognize signs of the disease. “Symptoms can be very broad and non-specific,” Dr. Rosenshein says. “There’s no clear cut symptom that says ‘I have endometriosis.’”
Some patients experience a myriad of symptoms, while others experience few or none at all. This can throw physicians off track. For example, endometriosis symptoms can present similarly to gastrointestinal diseases, Dr. Rosenshein says. As a result, it can be mistakenly diagnosed as bowel obstruction or irritable bowel syndrome (IBS).
Other patients don’t have any gastrointestinal symptoms, but experience intense menstrual cramping and/or an unusually heavy flow. These symptoms can be a sign of a number of other gynecological conditions, such as polycystic ovary syndrome (PCOS), which Tobias says is a common red herring that can delay endometriosis diagnosis.
But it’s not just the ambiguity of symptoms that is hindering diagnosis. Providers don’t always pursue verification of endometriosis as actively as they should. In fact, it’s not uncommon for physicians to skip the diagnostic process entirely and go straight to treatment.
“Patients present with maybe an irregular menstrual cycle or perhaps with obesity or a higher BMI, and they’re just classified with PCOS without any further investigation or further testing,” Tobias says. “They’re labeled with PCOS [and told], ‘See you later, here are some birth control pills to start.’”
Many providers use birth control pills as a blanket treatment for various gynecological conditions. They can alleviate pain and slow the growth of endometriosis, treat symptoms of PCOS, and lower the risk of ovarian and uterine cancers.
But treating endometriosis without a diagnosis is not an ideal solution. It leaves patients in the dark about the disease’s presence, its stage, and what can be done to prevent its progression.
“The important message I would give [to healthcare providers] is that you should always consider the diagnosis of endometriosis…Be very straightforward with that individual as to the possibility and do appropriate testing,” Dr. Rosenshein says.
But unfortunately, this isn’t always the case.
The Importance of a Preventative Approach
While there is no known way to prevent endometriosis, preventative healthcare – a philosophy of caring for patients proactively rather than reactively – can bring an earlier diagnosis and save patients from future complications.
According to the Women’s Preventative Services Institute, women should receive at least one preventive care visit each year to assess risk factors based on age, health status, reproductive health needs, and pregnancy status.
A major element of these visits, which the institute calls “well-woman preventative visits,” is allowing time for the patient to explain their health and situation. These conversations build rapport and give patients more room to disclose symptoms that could be warning signs.
“Within counseling, you find out so much more about the patient,” says Nicole Hammond, CRNP, nurse practitioner and colleague of Dr. Rosenshein at Mercy Hospital.
“Women don’t necessarily understand that periods should not be that painful or intercourse should not be painful,” she says. “It’s a matter of feeling like they have time or feeling comfortable enough to talk to their provider about these concerns.”
But “specialists don’t necessarily have the time to sit and counsel patients, ask questions, and then educate patients as much as needed,” Hammond says.
On average, patients only get about 11 seconds to explain the reasons for their visit before they are interrupted by their doctors—an inadequate time for patients to explain the full scope of their symptoms and experiences.
A Shortage of Physicians
It’s not that providers don’t want to give patients the necessary time to feel heard, but they aren’t always able to.
“Clearly, there is a shortage of primary care physicians and I think that [statement] would be accepted by all healthcare professionals,” Dr. Rosenshein says.
One 2022 study found that if primary care physicians followed national recommendation guidelines for preventive care, chronic disease care, and acute care, it would take more than 24 hours a day to see an average number of patients.
At present, more than 83 million people in the U.S. (about a fourth of the population) live in a primary care professional shortage area. And according to a report from the Association of American Medical Colleges, the shortage is expected to grow to a deficiency of 37,800-124,000 physicians within the next decade.
According to a 2022 report, the average wait time for a doctor’s appointment has increased by 24 percent since 2004. Currently, the average wait time is about 26 days.
The average wait time to see an OB/GYN is even longer, at 31 days. It can be twice as long in areas of the country experiencing physician shortages.
This strain is not only making it harder for patients to receive preventative care, but eroding the quality of the interaction. Some healthcare systems and clinics may be shortening the length of appointments to squeeze more patients in, compromising the quality of provider-patient interactions.
“Even if they’re not being rushed, [patients] may feel like they need to hurry up and get through the appointment because they know the doctor is so busy,” Hammond says.
And when patients feel rushed, “they may not talk about all the things that are bothering them. So then diagnosis is pushed back even further,” she says.
With diseases that are difficult to detect like endometriosis, cutting these conversations short can mean important warning signs slip through the cracks.
How Women’s Health NPs Can Help
As the role of the NP has evolved, healthcare teams are increasingly recognizing the value NPs bring when it comes to providing high-quality, preventative primary care.
“There’s a shortage across healthcare, across the board, and having nurse practitioners have full autonomy helps to bridge that gap,” Hammond says. “We can help to improve overall health for patients because we do have the time, and we provide the necessary education and counseling for patients.”
In recent years, the number of practices that employ NPs as a part of the healthcare team has increased substantially.
“I think now, as a society, we’re understanding what nurse practitioners are, what they can do, and the benefit that they provide,” Tobias says. “As providers, we do diagnose and manage chronic and acute illness. We order and interpret diagnostic tests, prescribe medications and other therapies.”
Some NPs work in a generalist capacity, while others choose a specialty. A women’s health nurse practitioner (WHNP) is an advanced practice nurse specializing in caring for women, intersex, and transgender individuals, typically focusing on obstetrics and gynecology.
In addition to the tasks and services performed by other advanced practice nurses, which include diagnosing illnesses, preventative care, and prescribing medication, WHNPs may also provide:
- Health and wellness counseling
- Intimate partner violence screening
- Contraceptive care
- STD screening, treatment, and follow up
- Fertility evaluations
- Pregnancy care
- Miscarriage care and support
- Evaluation and treatment of common infections
- Menopausal care
Over the years, more states are granting NPs full practice authority, which allows them to practice to the fullest extent of their education, including diagnosing and treating patients, without physician supervision.
This is a game changer when it comes to increasing healthcare access. In jurisdictions where patients can receive primary care from NPs, wait times have reduced. And in some cases, patients are more satisfied with care from an NP.
But there are opponents to full practice authority who are fighting to stop the shift from coming to fruition. Organizations including the American Medical Association (AMA) have said that allowing NPs to practice autonomously could “threaten patient safety.” The organization has written countless letters to state governments urging them not to pass full practice authority legislation.
Supporters counter that NPs are more than capable of providing quality care, pointing to overwhelming data that NPs provide the same quality of care as physicians that has been conducted over decades.
While the AMA has continuously tried to squash the movement over the last 30 years, the fight for NPs’ autonomy is progressing. As of early 2023, more than half of states now allow full practice for nurse practitioners.
The Future of Primary Care
More than helping to fill the gap of primary care physicians, NPs are revolutionizing women’s healthcare—and the U.S. healthcare system at large—through advocacy and education.
Their influence is poised for continued growth. Last year, the U.S. Bureau of Labor Statistics (BLS) reported that NPs will be the fastest-growing occupation across industries over the next decade.
As more states pass full practice autonomy legislation, patients will have more choices when it comes to their providers, better access to preventative care, and greater opportunity to catch reproductive diseases like endometriosis.
Nina Chamlou is an avid writer and multimedia content creator from Portland, OR. She writes about aviation, travel, business, technology, healthcare, and education. You can find her floating around the Pacific Northwest in diners and coffee shops, studying the locale from behind her MacBook.