Originally published in the September 2018 issue of Her Mind magazine.
After being widowed suddenly at the age of 35, Ellicott City resident Janet Weise approached each day in survival mode. Balancing the equally demanding jobs of a single mother to her son with her career as a college administrator, the former Division 1 college athlete admits that her personal health needs came last. “You can say I was a hot mess,” jokes Weise, who over the years had become inactive and, by her own admission, “pretty severely obese.” Then came the wakeup call.
Two years ago, at the age of 53 and post-menopause, Weise noticed bleeding. She mentioned it to her gynecologist who performed an internal ultrasound as well as an endometrial biopsy, by removing a piece of tissue from her uterus. Weise was diagnosed with complex atypical endometrial hyperplasia, a condition involving an overgrowth of the uterine lining that can lead to endometrial cancer.
Weise was referred to Amanda Nickles Fader, M.D., director of the Kelly Gynecologic Oncology Service, who performed a total hysterectomy and removed Weise’s fallopian tubes and ovaries. Fader, M.D., director of the Kelly Gynecologic Oncology Service, who performed a total hysterectomy and removed Weise’s fallopian tubes and ovaries. Fader, says Weise, eventually became her trusted friend as well physician. “I had read some of her [Fader’s] published work about obesity and cancer and watched a couple of her webinars, and we talked about it in an appointment,” Weise says. “I promised her I’d lose 90 pounds. I have five more to go.” The two women, both Howard County residents, now occasionally walk and run together in Centennial Park.
During her health crisis, Weise made a couple of decisions that, in retrospect, may have saved her life. But they were decisions that too few women come to. First, she paid attention to a painless but unusual symptom (irregular bleeding) and brought it up with her doctor in a timely manner. Next, she raised the sensitive but important subject of weight loss with yet another doctor. Despite our culture’s near-obsessive interest in explicit sex—40 million Americans regularly visit porn sites, according to cybersecurity company Webroot—adults tend to shy away from open and honest conversations about sexual health, whether to educate their own children or to keep their sexual partners informed.
Anecdotal and statistical evidence shows that physicians are equally guilty of avoiding these difficult topics. So it should come as no surprise that too few patients and physicians readily converse about sensitive subjects, particularly those involving anything “below the belt.”
In a recent study that surveyed more than 1,000 OB/GYNs, only 40 percent reported routinely asking patients about sexual problems or dysfunction, even though both can be a sign of serious health issues like endometriosis and infections. As for conversations with patients about weight loss, physicians tend to steer clear of these as well, citing a variety of reasons—from too little time in the office visit to lack of training on how to counsel patients on the matter.
Reason for optimism
While it’s impossible to calculate the cumulative and preventable damage to women’s health caused by poor communication between patients and physicians, there’s cause for optimism.
Increasingly, health care organizations have started to capture essential information about patients’ health, however sensitive it may be. In-office surveys are increasingly used to gather patient information, allowing patients to respond to awkward questions more honestly in private. For instance, someone is more likely to reveal the number of intimate partners she has had over the past year to a piece of paper than directly with a health professional. Johns Hopkins Medicine, says Fader, values comprehensive screening, so she and her colleagues are able to collect patient information on important questions. “We screen women on everything from domestic violence and sexual abuse to poverty and related socio-economic concerns,” she says.
Fader and her colleagues also support public events that raise awareness of gynecological cancers. These events may, in turn, get patients thinking—and inquiring—about related medical concerns. Just last May, Johns Hopkins hosted its third Below the Belt Stride 5K Race, raising more than $100,000 to support gynecologic cancer trials and immune therapies, along with related support services. Front and center in the event’s publicity materials was this message, “Every 5 minutes, a woman in the U.S. is diagnosed with a ‘below the belt’ gynecologic cancer. These cancers affect more than 100,000 women and cause more than 30,000 deaths each year.”
While getting such information out to the public is a start to improving awareness, Fader says there’s no substitute for direct communication between patient and provider. Over the last decade, she has observed that women are more willing to bring up sensitive matters. “There’s been an empowerment in speaking up about things that concern them,” she says.
Weise serves as a prime example. Having been in “survival mode” for so many years, she only recently began openly discussing her own health issues with those around her. “I talk about this to my friends, at meetings, at work,” Weise says, referring to her diagnosis of endometrial hyperplasia and her quest to live more healthfully as a result of it. “The more you share, the more support you get,” she adds.
The feeling that sharing information will yield support is essential to a sound patient-physician relationship, Fader believes. Even so, she acknowledges that not all patients feel their physicians are really paying attention. In the worst-case scenarios, Fader explains, patients are often made to feel ashamed—particularly about being overweight.
“There’s a lot of literature regarding disparities of care based on size,” says Fader, who points to factors from a lack of gowns sized for larger patients to physicians’ suggestions—whether subtle or overt—that a patient is to blame for her health problems.
As a physician who treats reproductive cancers, some a direct consequence of excess weight, Fader believes firmly in the power of a positive and open patient-physician relationship as key to improving health outcomes.
“Women should not settle. If they don’t feel like their provider listens to them, it’s okay to seek out someone else,” Fader says.
Photo credit: Mary Gardella