Women in rural communities find it especially hard to get endometriosis care or even a timely and correct diagnosis.
“I absolutely feel isolated,” says Katelyn Dancer who is an art teacher from the rural community of Clarendon, Arkansas, population 1445 in 2017. ‘‘We have one small clinic in town, and you can generally get seen only by a nurse practitioner.”
Sadly, in the United States today your zip code can determine the quality of health care available. And for rural areas, it’s been getting worse. Rural hospitals are struggling to stay afloat. A third of all rural hospitals nationwide are on the brink of shutting down. And often, even telemedicine is unavailable because access to broadband Internet is limited in rural areas.
Barriers to medical professionals can mean delayed diagnosis and treatment for endometriosis patients, which means more suffering and extended disease progression.
“It took me about nine years to get diagnosed,” says Kryss Shane, a dual-licensed mental health professional, who has lived in numerous rural communities.
“I saw 8-10 doctors over that time, but many weren’t experienced with endometriosis, and they told me it was ‘all in my head’ I got sicker and sicker … everything hurt,” says Shane.
Amanda Malachesky, a nutrition expert with Confluence Nutrition in Humboldt County in northern California had a similar experience. “I ignored things for a while, due to the inconvenience. I live 70 minutes from the nearest hospital, which is small and understaffed. It took about ten years to get a proper endometriosis diagnosis, and I ultimately had to leave the area for expert surgery.”
For Malachesky, the delayed diagnosis was compounded for years by her anxiety symptoms. ”I didn’t realize how big an impact surgery would have. When we finally removed the inflammatory tissue, my mental health improved.”
"Even if you are not suffering from endometriosis," says Jody Silva, M.Ed., the OB-GYN Rural Residency Manager at the University of Wisconsin (UW), “women are more likely to miss preventative screenings for cancer. Women who are pregnant are more likely to miss prenatal checkups. When women do come in for cancer screenings, they are often at more advanced stages in cancer than those living near OB-GYNs.”
Much of rural America is a health care desert where knowledgeable healthcare is severely limited. More than half of rural communities nationwide lack hospital-based obstetric services and mortality rates remain stubbornly elevated.
Recruiting OB-GYNs, primary care doctors, specialists, and medical staff to work in rural communities is challenging, especially for graduates carrying massive medical school debt. Though the cost of living is low, so are hospital salaries. The prospect of working at a rural hospital in a precarious financial situation is a tough sell, particularly for an OB-GYN. Maternity wards are the first thing to close in a financial pinch.
For more than 60 million Americans, or 20 percent of the US population, living in a rural community too often hampers positive healthcare outcomes and the opportunity to obtain robust health insurance or any insurance at all. Healthcare access, economic development, and government funding are all intimately linked.
Todd Brantley, Senior Director of Public Affairs at the North Carolina Rural Center explained the problem.
“Part of it is building a pipeline for people in rural communities to get into a healthcare profession and return home to an economically viable practice. The candidates most likely to serve in a rural community are most likely folks who come from a rural community themselves.”
Broadband internet access and the use of telemedicine, is widely considered the brightest future in rural healthcare. Telemedicine is a win-win for both healthcare organizations and patients, but it requires substantial financial investment on the part of governments and technical expertise to leverage its benefits. For patients, it lessens wait times, significantly expands access to healthcare specialists, and saves them on average $100 in transportation costs.
“I’m a huge fan of telemedicine. It aided in my post-surgery recovery,” says Malachesky. “Travel to a normal follow up appointment would have eaten up several hours of my day. Using video with a provider is really great. You can ask questions and get answers.”
Telemedicine can bring specialized care directly to endometriosis patients. For every 100,000 rural women, there are only 30 specialists. So, for women seeking fertility treatments, experiencing high-risk pregnancies or pelvic floor issues, or who need behavioral health support, telemedicine is a real lifeline. Routine matters like medication management or birth control counseling are far easier to schedule into one’s day-to-day where telemedicine is in play.
While most of us take broadband Internet access for granted, an estimated 24 million rural residents are unable to get online, largely due to infrastructure issues.
“There is no telemedicine without broadband,” says Brantley.
Laying fiber optic cables for Wi-Fi is expensive, and in some communities like Pink Hill, North Carolina, with less than 600 residents, the cost for this option was deemed prohibitive by major service providers.
Pink Hill residents had to take matters into their own hands, organizing to get broadband transmitters installed atop grain silos and water towers.
But medical schools are doing more to expose doctors to the unique challenges that come with practicing in a rural context. The University of Wisconsin (UW) launched the nation’s first-ever OB-GYN rural residency program and 24 schools nationwide now offer rural-residency tracks. The good news is that the majority of doctors who do set up practice in rural areas are still practicing in rural communities two years after graduation according to the American College of Obstetricians and Gynecologists (ACOG).
Laura McDowell, MD, is UW’s first resident in this program. She grew up in rural northwest Minnesota and fits this profile. Currently, McDowell is in her first of what will be eight rotations in rural settings, working alongside Dr. Brenda Jenkins at Divine Savior Healthcare in Portage. She’ll experience a wide range of healthcare scenarios typical of a lone practitioner within hundreds of miles from the nearest hospital. In-depth knowledge across multiple specialties is needed to best serve patients.
“Everything is rolled into one,” she says. “One of my patients in a recent rotation had elevated blood pressure. I had her come back in to get more lab work done and got an indication that she needed to deliver earlier than we originally thought. I was able to counsel her through that. I started her induction process, guided her through the labor process, helped deliver the baby, and took care of her afterward.”
According to Silva, there are hundreds of potential applicants like McDowell interested in practicing rural medicine, but the program’s reach is limited due to financial resources.
“All other specialties except OB-GYN, have state funding which goes directly to them -- we have to be recognized just like all the other specialties and receive appropriate funding.”
How can women in rural communities best advocate for themselves?
Silva said, “I want them to know they do have a voice. If they want to make a difference, talking with their state representative and asking them to look into funding programs like ours is the first step.”
Brantley says, “It’s spreading the word about the benefits and the ramifications of the economic viability.”
If you think you might have endometriosis, and live in a rural community, Shane and Malachesky agree. “Documentation is really key.”
Shane says: “Just writing down what you eat at what time, when things hurt, where things hurt, putting a number on a pain scale, this gives a roadmap in situations where there may not be so many doctors who know what endo is. Plus, keep people around who believe in you. That’s the mental health aspect for sure.”
“I want to encourage people to try and get diagnosed earlier rather than later. It’s a frustrating process, but If you think something is not right, keep going. Work to find an expert, someone who will help you investigate,” says Malachesky.
Endometriosis patients are no strangers to persistence, and it will be just this kind of grit needed to solve the rural healthcare dilemma.
To get more involved, contact the Federal Office of Rural Health Policy, the American Telemedicine Association, and the National Rural Health Association.