Equity in women's health
Women of childbearing age in the United States commonly experience sexual health illnesses and reproductive disorders that are not well understood by medical professionals due to deep inequities in research. These conditions drive a high risk for comorbidities and incite demand for progressive treatment within this population.
Chronic conditions soar in the US
In the US, women face significantly higher risks and costs in the healthcare system than their peers in developed countries. Compared to other high-income nations, US women of reproductive age (18-49), are most likely to have multiple chronic conditions; 1 in 5 reported experiencing 2 or more. Comparatively, less than 1 in 10 women in Switzerland, Germany, Sweden, and France experience the same.
Women of reproductive age face key health concerns
Polycystic ovary syndrome (PCOS) is a common endocrine disorder that causes the ovaries to produce an abnormal amount of androgens, a male sex hormone. Approximately 5 million reproductive-age women in the US experience this condition. Its complex nature has puzzled researchers looking to decode its long-term consequences.
In recent years, incidence of PCOS in the population has remained constant, though diagnoses are being determined at younger ages. Between the years 2006 and 2019, PCOS incidence rose among women ages 16-20 years and decreased among women aged 26-30. In fact, about 1 in every 10 teen girls and young women has PCOS.
Endometriosis, or endo, is a condition affecting 1 in 10 women where the lining of the uterus grows outside the uterine cavity. Physicians are unsure of what causes endometriosis, although research suggests a complex set of factors can lead to the disease.
Regarding prevalence, endometriosis incidence is difficult to determine. "There have been several studies looking at ICD (International Classification of Diseases)–10 codes and other ways of assessing prevalence," says Linda Giudice, MD, PhD, distinguished professor of OB/GYN and reproductive sciences at the University of California San Francisco and a codirector of the UCSF-Stanford Endometriosis Center for Discovery, Innovation, Training, and Community Engagement. "The numbers vary from about 3% to 10% of reproductive-age women and 30% to 50% of those who have it are women who have infertility or chronic pelvic pain. It's pretty common."
Inequity in PCOS and endo diagnosis
Given that endometriosis diagnosis has historically taken place by surgery, women without access to surgery may go undiagnosed, leading to serious inequities. Sawsan As-Sanie, MD, director of the endometriosis clinic at the University of Michigan, spoke about this on a panel of endometriosis experts for Contemporary OBGYN.
As-Sanie noted that access to care itself is not the only challenge but "having medical care by a physician who's aware of this disease and is trained to make the diagnosis. That also speaks to the potential disparities in diagnosis based on socioeconomic status, race, ethnicity, and access to care. You need to be able to see a physician who includes it as part of the differential diagnosis. If they have other diseases that they think are more likely in a given patient, they might not fully explore this as a diagnosis."
Similarly, women with PCOS may go underdiagnosed if they have a lower socioeconomic status. A 2011 study sponsored by the Iris Cantor-UCLA Women's Health Center found a statistically significant association (95% confidence interval) between low childhood socioeconomic status and PCOS, especially among women who later achieved high levels of education. This research was further supported by a Danish study in 2019, which found higher PCOS incidence in women from lower income tertiles.
PCOS & chronic illness comorbidity
Although PCOS puts some women at risk for cardiometabolic disorders, there are no clear associations between PCOS and cardiovascular disease (CVD). An article in Endocrine Today noted that hyperandrogenism, insulin resistance, and increased visceral adiposity (factors that are common in PCOS) might provide biological pathways to increase CVD.
“It is very clear that teenagers and women in their 20s and 30s with PCOS, especially with obesity, have increased CV risk factors," Melanie Cree-Green, MD, PhD, who is director of the adolescent PCOS multidisciplinary clinic at the University of Colorado, Anschutz and Children's Hospital Colorado, told Endocrine Today.
Women with PCOS have an increased risk of metabolic conditions, such as hypertension, diabetes, and hyperlipidemia. Insulin resistance, for example, underscores the risk for several cardiometabolic disorders, such as metabolic syndrome and Type 2 diabetes. Studies have also shown that women with self-reported long menstrual cycles or irregular menses are 2-3 times more likely to develop Type 2 diabetes. However, it is unknown if these risks persist through postmenopausal years.
“Healthcare providers taking care of PCOS patients should be aware of this increased risk in terms of screening and counseling on diet, exercise, and other lifestyle factors," says Ange Wang, MD of UCSF Reproductive Health.
The Coronary Artery Risk Development in Young Adults (CARDIA) study, conducted over a 30-year period, found an increased risk in certain chronic conditions for women who met the PCOS criteria as defined by the National Institutes of Health (NIH):
- Hypertension was observed in 43.2% of women with PCOS compared to 41.2% of those without PCOS
- Type 2 diabetes was diagnosed for 33.3% of women with PCOS compared to 22.1% of women without PCOS
- Contrarily, cardiovascular events occurred in 3.7% of women living with PCOS and 6.4% of women without PCOS
Further studies are needed to determine if certain characteristics of PCOS are associated with specific metabolic conditions. Many existing studies have created mixed results around the risk factors for women with PCOS, which has led to more confusion than clarity for providers treating women with these symptoms. Without clear causation or even strong correlation between conditions such as PCOS and CVD, patients and providers may feel uncertain of their risk and recommended care plan.
Endometriosis and chronic illness comorbidity
Among the many symptoms of endometriosis are depression and anxiety. Some women facing conditions like endo can benefit from providers who understand the co-recurring nature of physical and mental health symptoms.
Lysia Demetriou, PhD, a postdoctoral research assistant at the University of Oxford in England, urges healthcare professionals to “take a holistic approach to the assessment of people with endometriosis and understand that stressful events, such as the pandemic, may negatively affect symptoms and that a personalized treatment plan may be more effective.
In a 2021 Covid-19 Health Evaluation and Cardiovascular Complications study, many women with endometriosis reported worse symptoms and mental health during the early stages of the pandemic. While the exact link between stress and endometriosis symptoms are currently inconclusive, the study shed light on why public health professionals should maintain awareness of the impact crises have on people with chronic conditions.
Endometriosis patients face risk of several chronic conditions and comorbidities including cancer, autoimmune disorders, fibromyalgia, and adhesions.
Inequity in women's health
The lack of data around patients with PCOS and endometriosis is reflective of the larger issue of women's health, which includes many inequities such as, but not limited to:
- Absence of women in clinical trials
- Gender bias–over 20% of women report feeling ignored by their provider
- Menopause–34% of women with menopause symptoms are not diagnosed and do not know they are in the menopause transition
- The US lags its global counterparts in maternal health outcomes
- Bone health–women account for 80% of Americans with osteoporosis
- Alzheimer's–over two-thirds of Alzheimer's patients are women
- Autoimmune disorders–nearly 80% of patients are women
Historically, medical research has excluded women from trials, studies, funding, and related scholarship, which leads to extensive disparities. Endometriosis is among the conditions (including migraines, headaches, and anxiety disorders) that disproportionately affect women and receive much less funding in proportion to the burden they exert on the US population.
Without more inclusive research, providers will have few options to treat their patients and women's comorbid illnesses will persist.
Treatment & medical advances
In 1993, the Endometriosis Association began Endometriosis Awareness Month, which is now observed worldwide. Advocacy in the 2010s led to US legislation in 2017 that declared September PCOS Awareness Month. Today, federal agencies are working to improve data collection that will improve outcomes for women's health. Currently, the Fertility & Infertility (FI) Branch of the NICHD supports PCOS research. A long-term goal is to find more effective treatments for PCOS symptoms and other conditions associated with the disorder. These studies will include a look into how genetics affect responses to treatment and how various demographics exhibit symptoms.
The FI branch along with the Gynecologic Health and Disease Branch (GHDB) is also expanding endometriosis research. The Division of Intramural Population Health Research (DIPHR) led the Endometriosis: Natural History, Diagnosis, and Outcomes (ENDO) Study to gain insight into the role endocrine-disrupting chemicals play in endometriosis.
Most recently, Georgia congresswoman Nikema Williams introduced legislation March 2023 to increase health awareness for youth. The Know Your Body Act would instruct the Department of Health and Human Services to create educational materials that teach elementary and secondary school students about uterine, ovarian, and related hormonal and menstrual disorders, such as endometriosis and PCOS.
RTI Health Advance supports progress in women's health
As researchers and providers seek to realize equity in clinical trials and medical treatment, knowledgeable and experienced guidance is necessary to ideate modern solutions. The experts at RTI Health Advance can inform your research methods with contextualized data and guide your team to effective, strategic innovations. Contact us.