The U.S. medical system's continued failure of women
Birth control is not enough to grant women bodily-autonomy. Here’s why.
By Rachel Hallett
Amanda Butler clutched the sides of the medical chair at her gynecologist's office in Los Angeles, California. The cold metal was a nice departure from her sweat slicked arms that she was cradling earlier; a desperate attempt to calm her nerves. The thin, crepe examination paper stuck to her back. It ripped and peeled as she scooted to the bottom of the chair, straddling her legs into the appropriate supports at the end, then splaying them wide as instructed by her doctor.
“Take a deep breath,” her doctor instructed.
Butler obeyed, laying her head back and staring up at the buzzing medical light. The clamp felt cold on her warm body. Her doctor began to expand the clamp, dilating Butler’s cervix. With each twist of the clamp, Butler’s pain intensified. She stared directly at the light, as tears blurred her vision. The pain was unbearable; the worst she’d ever felt. Butler’s doctor dilated her to 10 centimeters, the appropriate dilation for someone giving birth. Butler sobbed through the pain.
“Are you sure you want to do this?” Butler’s doctor asked.
It will all be worth it, she told herself. After all, this was the only answer to combatting painful periods and not having to worry about pregnancy.
Butler’s lip quivered.
Amanda Butler in West Hollywood, California. (Photo by Rachel Hallett)
“Yes,” she responded, shakily, “I really want this.”
Butler’s IUD insertion was just the beginning of her traumatic journey with birth control. She would endure four years of debilitating pain, strange side effects, doctors' visits, frustration, tears and thousands of dollars in medical bills.
And Butler’s experience is not isolated. It speaks to the structural issue of the United States healthcare system as a whole. It is too often a reactive system; one that addresses illness after the fact. It is a bandage. Peeling back the gauze reveals gender disparities, a lack of funding and overall systemic failures.
“There’s a legacy of women being excluded from medical research studies in this country,” explained Allyson Sonenshine of Orange County Women’s Health Project.
Knowledge Gaps
Between 1977-1993, the FDA banned women of reproductive age from medical studies and research. At the time, researchers believed male and female bodies operated in the same manner. They also worried that menstrual cycles and hormone fluctuations would spoil results. Researchers feared that experimenting on reproductive-aged women would affect their fertility.
Packets of birth control pills. (Photo curtesy of Adobe Stock)
These misunderstandings of the female body continue today. Lacking female research, the United States medical system remains decades behind in understanding women’s health.
Sonenshine noticed these disparities in her own work.
Sonenshine is a co-founder of Orange County Women’s Health Project, a nonprofit organization working to advance women’s health through education and advocacy.
She started the foundation with her colleagues in 2011. Immediately, she noticed gender disparities in the research conducted by the county’s official health agency.
When the Orange County Health Care Agency distributed a report on overall tobacco use in the county, they left out a crucial demographic.
“They'd break it down by age, they’d break it down by socioeconomic status and they’d break it down by geography. But they would not break it down by gender,” said Sonenshine.
“I thought that was really odd,” shared Sonenshine, “Because clearly, when they're collecting this data, they get the gender of the respondents. So they're sitting on all this raw data, but it wasn't deemed important enough by the powers that be to report on it.”
According to an article published in the National Institutes of Health, funding for medical research disproportionately favors males. In 2019 alone, PubMed revealed that the number of studies on erectile dysfunction was nearly six times higher than that of studies which solely focused on female infertility. These knowledge gaps continue to permeate into other areas of women’s health.
“The fetal and minority maternal death rates in this country are literally insane,” explained registered emergency room nurse, Lauren Vogel.
“Ryan Reynolds [actor] can endorse a men’s health ad about colon cancer, and that’s not taboo. But post-menopausal vaginal bleeding isn’t okay either. That means you need to get checked for endometrial cancer. We need to normalize talking about women’s health in the same way that we talk about men’s,” said Vogel.
Health issues like autoimmune diseases, uterine fibroids, endometriosis and polycystic ovarian syndrome either disproportionately or exclusively affect women, yet are among the most underfunded and difficult to diagnose.
Butler experienced this first hand when looking for answers to the strange symptoms that developed after getting her Skyla IUD taken out in 2018. After an exhaustive four-year search, Butler finally received her diagnosis: Hashimoto’s, an autoimmune disorder affecting the Thyroid. Birth control, which releases estrogen into the body, is not recommended for people suffering from autoimmune disorders, as it can further interrupt their body’s hormone production process.
“I grew up in an era where everyone was on birth control. I was always told that if you were sexually active, you better just be on it. I was never taught anything about the side effects.” Butler said.
The Human Cost
Brie Goldsobel clutched the butterfly tattoo on her arm, giving it a nervous squeeze. It’s an homage to her younger self she explained.
“I played soccer when I was little. But I would get bored and I’d look to the sky and search for butterflies. My grandpa would always yell from the sidelines and tell me to stop chasing butterflies and focus on the game.”
Her tattoo is a permanent reminder that amazing things happen all around. If you don’t see it, maybe you’re focused on the wrong thing.
Brie Goldsobel working at the Los Feliz Flea Market in L.A. (Photo by Rachel Hallett)
That approach has carried her through some tough life moments. Like in early 2021 when she decided to change her method of birth control. She heard through a friend that the IUD would make her periods lighter, perhaps even stop it completely. While Goldsobel had moderate success with the Aurovela birth control pill, she hoped to find something that better suited her needs and her body.
“I've heard stories about how painful it was. But I have never experienced pain like that before in my life. It was excruciating. I wish it was talked about more…how frickin painful it is,” Goldsobel said.
Immediately after her IUD was inserted, Golsobel experienced intense cramping. Her doctor explained that this was a normal occurrence for the first couple of hours.
But the cramps never went away.
Still, Goldsobel powered through the pain. The IUD insertion process had been such an ordeal, she couldn’t back out now.
A month and half passed before Goldsobel decided to check in with her doctor.
“I was driving and I suddenly felt this intense shooting pain in my uterus. I had to pull over. I could barely breathe. I just started crying,” Goldsobel recalled.
Her doctor scheduled Goldsobel for an emergency ultrasound.
“The nurse who conducts the ultrasound, they’re not supposed to tell you what they find. They’re supposed to wait for the doctor. But she was doing it and she was like, ‘holy shit ’out loud.”
The nurse told Goldsobel that the IUD had been inserted way too low. Not only would this render the device ineffective, but it was also likely the cause of her excruciating pain. Outraged, Goldsobel returned to her doctor, tearfully demanding answers.
An IUD birth control device (Photo curtesy of Adobe Stock)
“She just kept brushing it off. She was like ‘there’s no way it’s too low, I can show you if you really want to check’. She kept gaslighting me. But I pushed. I was in so much pain. I asked her to check it herself.”
When she did, the doctor confirmed that Goldsobel’s IUD was indeed inserted too low. Goldsobel would need to get it taken out and reinserted if she wished to stick with the IUD.
“I was just so frustrated. And I thought the pain was from it being inserted improperly. So I tried again. I went through the worst pain of my life again. I thought it was what I had to do.”
But the pain didn’t stop. It got worse.
Her cramps got worse, she became dizzy all the time and her eyesight blurred. She felt that her body was betraying her, but she couldn’t understand why. Goldsobel sought answers from multiple doctors. One finally came back, with a response: it looked like a brain tumor. She was immediately rushed in for an MRI.
“No one was telling me anything, they were all just freaking out,” Golsobel recalled. Tears welled in her eyes. “I was terrified.”
The MRI offered good news - sort of.
“They told me that there wasn’t a tumor, but they thought it was a pseudotumor,” Goldsobel said.
“I thought I was going to die.”
— Brie Goldsobel
A pseudotumor is caused by a buildup of cerebrospinal fluid that mimics the symptoms of a real tumor, like dizziness, blurred vision, nausea, ear ringing and headaches. It is also the center of a class action lawsuit against the Mirena IUD. The IUD that Goldsobel still had in her body.
“I remember I was on the phone with my sister, and we finally started putting it all together. We found information about other women and their lawsuits online. Up until that point I just felt so alone, and unsupported. No one was believing me,” Golsobel wiped away a tear. “I thought I was gonna die.”
The financial burden on both Goldsobel and Butler was immense.
“Insurance covered very little,” explained Goldsobel, “I literally still owe so much. I have to pay off something that happened to me that I had no control over.”
For Butler, it took several different doctors, thousands of dollars and four years of her life to find someone who took her health concerns seriously.
“I was just constantly gaslit. When I finally got my diagnosis I was actually relieved,” said Butler, “I was just so thankful. Not knowing was the worst part.”
Systemic Failures
The Mirena IUD is part of a number of lawsuits made against parent pharmaceutical company Bayer. While many have been consolidated, lawsuits over Mirena’s link to pseudotumors remain open as of 2022.
But the Mirena IUD isn’t the only birth control device of Bayer’s that has caused concern. Bayer also produced the birth control pill, Yaz. Lawsuits began surfacing in 2009 which questioned the safety of Yaz, alleging serious health issues such as blood clots, gallbladder injuries, stroke and kidney failure.
“I threw a pulmonary embolism when I was on Yaz,” Vogel recalled of her experience on the pill back in 2010, “I was only on it for about two months.”
A pulmonary embolism occurs when a blood clot gets stuck in the artery of a lung, blocking blood flow to that area of the lung. This can cause serious long-term injuries, and even death.
In their lawsuits, people claimed that Bayer knew of the alleged risks and failed to disclose or adequately warn users. Bayer settled in many of these individual and class action cases. As of 2019, there are no further cases pending regarding Yaz birth control.
Bayer has repeatedly denied that any of their products are dangerous or have caused injury.
But the failure of women’s health does not lie exclusively on the shoulders of private companies. In June 2022 the U.S. Supreme Court overturned Roe v. Wade and, with it, the constitutional right to abortion, in the landmark case Dobbs v. Jackson’s Women Health Organization.
Female empowerment wall at the Women's March L.A. office. (Photo by Rachel Hallett)
The Dobbs decision sparked an insular debate over women’s bodily autonomy; one that narrowly focused on the right to abortion and birth control. While access to such healthcare is an essential element to complete bodily autonomy for women, it is not the singular element.
Sonenshine believes that this is the difference between reproductive rights and reproductive justice. Women’s reproductive justice has been on the ballot chopping block for some time.
“You can often have a right, but not be able to access that right due to various structural barriers,” said Sonenshine.
Young girl at the Women's March ralley in L.A. (Photo by Rachel Hallett)
Both physical access and informational access are necessary elements of bodily-autonomy. Without the proper research and funding for diseases across gender lines, this informational access is hindered, and unequal.
“Women don’t have bodily autonomy in this country anymore,” said Vogel. “I mean, we never really did.”
But the Dobbs decision has established renewed energy in legislation supporting reproductive justice. Sonenshine hopes that this is a step in activating the public into demanding legislation and reform in the women’s health space.
“I just think that it hasn't been top of mind for the average voter for a long time, because people have felt for most of the last 50 years that Roe v. Wade was settled law and that the Supreme Court would never overturn it,” explained Sonenshine. “It just has not been a priority for the general public.
Broken Trust
It was a Tuesday in September 2022 when Butler received the call. She was expecting to hear from her nurse regarding a recent biopsy. But when she answered the phone, the nurse told her that she’d need to come in and speak with the doctor directly.
Amanda Butler in West Hollywood, California. (Photo by Rachel Hallett)
Butler asked why this couldn’t be discussed over the phone.
“Because,” the nurse explained, “your results aren’t normal.”
Butler’s heart sank.
When Butler went to the doctor’s office the next morning, she lay down on the medical chair like she had all those years before. The crepe paper crinkled with every anguished breath. She used this time to pray. And then the doctor arrived.
Her doctor told her that she had ductal carcinoma in situ, an early form of breast cancer.
Butler is 32, with no family history of breast cancer.
Breast cancer can develop in a myriad of ways. Butler’s doctor informed her that after she got off birth control, her hormone levels took a long time to stabilize. This likely caused her body to stay in a high, estrogen-positive environment; a prime habitat for breast cancer cells to grow. Additionally, use of a levonorgestrel-releasing IUD, like the Skyla IUD Butler used, can increase the risk of developing breast cancer, according to the Journal of Obstetrics and Gynecology.
The Skyla IUD is also a Bayer pharmaceuticals product.
Butler sobbed.
Health is Butler’s whole life. She began her fitness career in 2016 after earning her degree in health sciences. Today, the Missouri-native is a fitness instructor in Los Angeles. She works out regularly and eats clean. She has clear, dewy skin and bright eyes. She is full of light and spirit.
But she still has cancer.
“Sometimes you don’t get to choose your own story,” she said, “But this is just the beginning of mine.”
Butler has a number of tough decisions facing her now. She plans to share her difficult journey on social media and hopes to be a voice for young people to take breast cancer seriously.
“I was placed in the fitness and wellness industry for a reason and I know that through finding strength to share my story, I can help so many other women out there,” said Butler, “In turn, that will help me get through this tough journey. I am confident there is a purpose to everything and am believing that my story does not end here.”
Goldsobel got her IUD taken out in early 2022.
“When the doctor took it out, I actually asked if I could keep it,” she laughed. “I wanted to burn it.”
Goldsobel took the IUD home in a ziplock bag, started a bonfire and turned on her favorite female empowerment music, a mix of Rihanna, Beyoncé and Lady Gaga. Her own ritual; the beginning of a new journey in reclaiming her body, health and life.
She’s found the strength to move forward, and continues to search for the butterflies in those hard moments. But her faith in western medicine remains fractured.
“It feels like doctors don’t trust women. It is so dehumanizing to tell your doctor what you’re feeling and just have them brush you off,” shared Goldsobel, “It feels like you’re not important. Like you’re not a life they care about.”
