Research, patient advocacy aim to fill the gaps in women’s health

Gaps exist in research and knowledge about women’s health, according to medical professionals, and it is both additional research and patient advocacy that will ultimately bring improvements.

In addition to combating lingering biases, research is having to catch up when it comes to health issues affecting women specifically, said Luann Racher, an OB-GYN at the University of Arkansas for Medical Sciences.

There is still so much doctors do not know about women’s health, such as why certain women are more likely than others to develop polycystic ovary syndrome or endometriosis — two of the most common gynecological disorders — or why some women develop fibroids when others don’t, Racher said.

For diabetes, doctors can look at certain markers to determine who is at risk and take preventative steps to reduce those risks, she said. That does not exist for many disorders in women’s health, she added.

“There are so many things out there in women’s health that we have not even scratched the surface of understanding yet,” she said.

Jennifer Hill of Skiatook, Okla., is in her 50s and grew up with endometriosis. She now works in women’s health as a doula. She said when she was 19, doctors had to do an exploratory surgery — a diagnostic laparoscopy — to officially diagnose her with a gynecological disorder.

They gave her two options: She could have a hysterectomy or injections to shut down her pituitary gland, which would essentially force her body into menopause.

She chose the second option and had awful side effects, she said. That was around 25 years ago, she added, and things have not really improved as far as treatment or diagnosis.

“It really saddens me after all these years there’s not a better way of identifying the problem and better treatment,” Hill said.

Jamie Baum, director of the University of Arkansas Center for Human Nutrition in Fayetteville, said she and her team of researchers are aiming to fill in some of the gaps in women’s health, especially in terms of nutrition.

Her team started recruiting recently for an intervention study to better understand how nutrition affects women with polycystic ovary syndrome.

The disorder is characterized by irregular menstrual cycles, cysts on one or both of the ovaries and high levels of androgens, according to the Cleveland Clinic.

It is one of the most common hormonal disturbances, impacting 6% to 12% of women who are of reproductive age in the U.S., Baum said.

Women with polycystic ovary syndrome are at increased risk of weight gain, which puts them at higher risk for developing chronic diseases such as Type 2 diabetes, heart disease and high blood pressure, as well as sleep disruption, anxiety and depression, she said. Lifestyle changes, such as diet, are often the first part of intervention for someone with polycystic ovary syndrome, she added.

However, there is a lot of debate as to what the correct diet intervention should be for these women, and most interventions focus on weight loss and reducing chronic disease risk, Baum said. There isn’t a lot of understanding about how diet impacts the well-being of those with polycystic ovary syndrome, she added.

Baum and her team will be looking into how a higher-protein, calorie-controlled diet affects sleep; mood, including anxiety and depression symptoms; and metabolism in women with the disorder, she said.

This study focusing on sleep, mood and metabolism could be a game-changer for women’s health, Baum said. Polycystic ovary syndrome affects up to one in 10 women globally, she said, and while researchers often focus on weight and hormones, the emotional and mental burden is just as significant.

“Women with polycystic ovary syndrome are more likely to experience anxiety, depression and poor quality of life, yet there are few nonmedication strategies to address that,” she added.

This study is a step toward more personalized, gender-specific nutrition guidance, she said, adding “instead of generic advice like ‘eat less,’ we could offer women with polycystic ovary syndrome a more targeted, effective tool for managing both the physical and emotional challenges of this condition — through something as accessible as food.”

Baum and her team are recruiting women with and without polycystic ovary syndrome between the ages of 18 and 40 to be a part of the study. They are looking for around 120 participants who can commit to the 16-week intervention. Women can write to [email protected] for more information.

MISSING IN MENOPAUSE

Another area in women’s health that needs attention is menopause, which affects all women at some point in their life, said Racher with UAMS.

Amy Cain of Tulsa started going through menopause in her 40s. She had back pain and her joints became so stiff, she could not even lift a gallon of milk, she said.

When she first went to her gynecologist, they told her she was too young to be going through menopause, Cain said. However, she started doing her own research and saw that what she was experiencing were symptoms of menopause.

She kept seeing doctors and specialists, and nobody attributed her symptoms to menopause, she said, but she fervently believed that was what was happening.

Doctors were only focused on treating individual symptoms, instead of seeing all of her conditions as menopausal, she added.

Even when she had a frozen shoulder — a common condition during menopause — her primary care physician told her how to deal with the pain and stiffness she was experiencing, and did not bring up menopause, Cain said.

“I was having to do all this research on my own,” she said. She decried the lack of education surrounding menopause, saying no one is telling women about what symptoms they might experience.

Menopause affects every woman differently, and doctors don’t know why, said Amrit Dockery, physician and chief medical officer of a primary care clinic in Tulsa.

More research needs to be done to better understand how menopause works, she said. There are no specific genetic variables physicians can point to and say, “You are likely to go through menopause in this way because of these reasons.”

With more digging and more research, doctors will be able to better support women, she added. However, before more research is done, medical professionals can provide better care by asking more questions, listening and taking patients seriously, Dockery said.

MOVING THE NEEDLE

Canaan Burkett of Oklahoma City is in her 20s and said she has started going with her friends to their doctor appointments to offer support and advocate for women’s health.

A few years ago, Burkett had something going on in her body she had no explanation for, and neither did her doctors, she said. For two years, she took charge of what was practically an investigation into her own health and well-being, because doctors did not proactively consider what could be causing her discomfort, she said.

She was throwing up every morning and gained 50 pounds in three months, she said, adding that all her doctors dismissed her symptoms.

They told her what was happening was entirely hormonal and left it at that, she said.

Every doctor she spoke to seemingly went directly to hormones as a cause when dealing with what they considered to be a “woman’s problem,” Burkett said. Yet, her doctors never referred her to a hormone specialist, she added.

Burkett said she had to ask for specific tests to be done on her for two years — every request she made attempting to find solutions, came from research she had done herself.

“You want your doctors to be the ones with the information, and you hope that you don’t have to be the one advocating and asking for these tests,” she said, “but a lot of times, it ends up where you are having to find that information and that research on your own.”

Eventually through process of elimination, Burkett was convinced her health stemmed from her gallbladder, but when her doctors did a test, it showed her gallbladder functioning perfectly and they were content to leave it at that, she said.

They eventually found out, after Burkett pressed the issue, her gallbladder was over-functioning, and previous tests did not pick that up, she said.

In every step of the process, Burkett said she had to advocate for tests to be taken in different ways. She had to constantly ask what the next steps were because her doctors were ready to let her go home with no solutions, she said.

When it was time to have her gallbladder removed, Burkett said all her doctors spoke down to her, disregarding the physical pain she was in. They would alter the language she used to explain her pain to try and make it sound less intense, she said.

When she woke up from the surgery, Burkett said she was screaming and throwing up from pain. She said she told her doctors she had acid leaking in her chest, and the surgeon corrected her saying no, she just had fluid in her abdominal cavity, and he sent her home.

She was home for three days before having to go back to the surgeon, she said.

Nobody believed her when she told them her level of pain, she said, and no doctor apologized for being wrong.

“The main thing I learned is that no one else is going to advocate for you the way that you are going to advocate for you,” Burkett said. The way things are today, if a woman knows something is wrong with her, she has to keep telling medical professionals until somebody believes her, she added.

One of the biggest barriers in women’s health, historically and today, is the paternalistic perspective of many of those practicing medicine, Racher said.

However, patients are driving a movement, demanding to be heard and to have more input in their health care, she said.

“I wish they didn’t have to be the ones driving it,” she said, “but it is the patient demand that is going to move the needle and encourage researchers to take women’s health seriously.”