Feb. 27, 2023 – When Ilene Kaplan felt a hard mass in her belly about 4 years ago, she feared the worst. A sonogram determined the lump was a cluster of uterine fibroids, and Kaplan was relieved when her doctor assured her they would shrink when she went into menopause, without intervention.
But Kaplan, a health coach on Long Island, NY, soon had debilitating symptoms. The mother of three, who’s now 55, felt like she was pregnant, with pelvic pressure pushing up into her ribs, and a swelling stomach that hindered her high-intensity workouts. Her menstrual flow volleyed between trickle and gush. She began peeing blood, signaling a urinary tract infection.
"I didn't trust my body anymore," she says.
The diagnosis after seeing a urologist: Kaplan's fibroids were pushing into her bladder, making her unable to fully empty it and putting her at risk of further UTIs. Not only was waiting for menopause not feasible, but Kaplan also learned that the reshuffling of hormones during perimenopause could enlarge her fibroids before shrinking them.
When the same doctor who had prescribed inaction eventually recommended against a hysterectomy, Kaplan decided to seek a second opinion from another OB/GYN.
"He said to me when he saw the scans, 'I don't understand how for 1 second she said [you] don't need a hysterectomy,'" Kaplan says.
Consider a Multidisciplinary Approach
Diagnosing Kaplan, one of 26 million women in the United States living with uterine fibroids, was simple. But treating her became a years-long ordeal, much of which she spent in discomfort.
Whether choosing the best treatment for a female patient with a common condition, or diagnosing her with a serious condition, doctors may benefit from speaking with a women's health center, says Orli Etingin, MD, founder and medical director of the Iris Cantor Women's Health Center at NewYork-Presbyterian Hospital/Weill Cornell Medical Center in New York City.
"We consider ourselves part of a relatively new movement. Most of us would be happy to get on the phone with somebody and discuss cases," she says. "We're all happy to share the knowledge because we realize that promoting this helps us all – not just as women, but as physicians and caregivers."
Even for patients such as Kaplan who have a gynecologic issue, a holistic approach to treatment should be practiced, Etingin says. Doctors should take into account the patient’s pain levels, symptoms, and fertility goals, and how these things affect their overall health.
"I think it's important for well-trained, multidisciplinary specialists to have conversations together about patients, because everyone's case is going to be a little different,” she says.
In the early 1990s, Etingin transitioned from laboratory research in vascular biology at Weill Cornell Medical College to clinical practice, and ventured to a handful of women's health meetings.
"I was just struck with how primitive this field was, and how the assumption was that women are just miniature versions of men," she says, noting that "there was really no opportunity for what I would call very proactive prevention."
Learning From Women's Health Centers
In Etingin's experience, a gynecologist would double as a general practitioner for a woman of childbearing age – a woman may not see a proper primary care doctor until she was much older or had already developed a serious condition such as heart disease or cancer.
Etingin pitched the idea of an all-inclusive practice where women would receive care beyond their reproductive health, eventually incorporating preventive, diagnostic, and treatment services from urology to dermatology.
"All these different specialties together have enabled us to teach the next generation of doctors about this kind of comprehensive care," she says . "We can provide one location for almost all of a woman's health needs."
Today, women's health centers in the United States are common, from independent clinics to those linked to academic institutions and major hospital systems.
Juliette The, MD, is a diagnostic radiologist at the Christine E. Lynn Women's Health & Wellness Institute, part of Boca Raton Regional Hospital, in Florida. Although she specializes in breast imaging, The says the institute's collaborative spirit helps her treat "the whole woman."
"We can help each other out on difficult cases, or even just routine cases," she says. For example, she meets weekly with members of a breast cancer patient's care team, from oncologist to plastic surgeon.
"We discuss what the best treatment for her is, and sometimes it's not straightforward, but we always have a really good discussion on what would be the best approach," she says.
Successes of women's health centers include increased access to care for a more diverse patient population and expanded research opportunities for providers, according to a 2022 review in the Journal of Women's Health. Groups such as the Society for Women's Health Research say the continued adoption of this bird's-eye view of a woman's health hinges on doctors' universal grasp of something far smaller: sex differences at the cellular level.
Overcoming Bias With Biology
The historical exclusion of women from clinical research has led to gaps in how much doctors know about how a condition affects women, according to Irene Aninye, PhD, chief science officer of the Society for Women's Health Research in Washington, DC. And the less doctors know about how sex influences a disease, the more likely that condition is to be underdiagnosed or mistreated.
The FDA in 1977 recommended excluding any "premenopausal female capable of becoming pregnant" from phase I and early phase II clinical trials, citing the toxic effects of drugs such as thalidomide on a fetus. By 1986, policy changed when the National Institutes of Health encouraged researchers to include women in their studies, a guideline that extended to racial and ethnic minorities in 1989. But the guideline was poorly enforced, and only became law in 1993.
Even so, simply including more female study participants isn't enough, Aninye says. Health care professionals must go a step further in their analyses to help bridge the gap in knowledge.
"Sex is a biological variable," she says. "You actually have to look at the impact on women versus the impact on men. Don't just lump them together."
For example, women are twice as likely as men to have an autoimmune disorder. Severe obstructive sleep apnea is more prevalent in old age for women, but in middle age for men. Heart disease is the leading cause of death in women nationwide, a condition the CDC concedes "is sometimes thought of as a man's disease."
Although roughly half of participants in NIH-funded clinical research now are female, the agency didn't incorporate sex as a biological variable – the consideration of sex in study design and analysis – into its bench research policy until 2016.
"There have to be safe ways and strategic ways of including women, so that we can understand their health better and be able to treat them appropriately and safely," Aninye says.
Many female-specific conditions also lack adequate funding. Last year, the NIH allotted $1 million to the study of vulvodynia, the lowest amount among a database of more than 300 funded diseases. Vaginal cancer received $2 million, uterine fibroids $17 million, and endometriosis $21 million. By comparison, roughly $2.5 billion went toward digestive diseases.
Diagnostic Cheat Sheets
As researchers catch up, the Society for Women's Health Research offers doctors and patients free guides and toolkits on a variety of health conditions. The Clinician Resource Guide to Fertility Health Care, for instance, features a flow chart to help with tricky diagnoses, while the Psoriatic Arthritis Toolkit contains a worksheet that patients can give their doctor to help with a treatment plan.
The Sex and Gender Health Collaborative, part of the American Medical Women’s Association, is also developing "crunch sheets" to help doctors consider sex differences for conditions like bladder cancer and UTIs.
"Physicians, if they're not aware of those differences, they're not going to make the correct diagnosis," says Deborah Kwolek, MD, co-chair of the collaborative's Mentorship Committee who practices at Massachusetts General Hospital in Boston. "This is going to help with the diagnosis of hard-to-treat conditions."
The collaborative is pushing for sex- and gender-specific health to be integrated into medical education so that the next generation of doctors are knowledgeable. During the 2020 Sex and Gender Health Education Summit, sponsored in part by the American Medical Women’s Association, a working group developed tenets for students, one of which is considering sex and gender in clinical decision-making.
Kwolek is also co-editor of the textbook Sex- and Gender-Based Women's Health: A Practical Guide for Primary Care.
"I would encourage physicians, when they're considering a diagnosis or treatment, to make sure that they consider the sex and gender of the patient in their equation," Kwolek says. Doctors, in turn, should "encourage women to be asking those questions of their practitioner."
Kaplan wishes her original OB/GYN had offered her a more concrete treatment plan. Perhaps the years of pelvic discomfort could have been avoided.
In December, she finally had a hysterectomy, the only treatment that guarantees a woman won't develop new or worsening fibroids. She had a laparoscopic, partial hysterectomy, allowing her to keep her cervix and ovaries.
"Women need to definitely advocate for ourselves. Don't just accept what you're told,” Kaplan says. "Get another opinion, especially when it comes to surgery … the body has an amazing ability of telling you when it's time."