Susan Nathiel, Daughters Of Madness

NEVER A GOD

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From heart disease to IUDs: How doctors dismiss women’s pain

Several studies support the claim that gender bias in medicine routinely leads to a denial of pain relief for female patients for a range of health conditions

One woman was told she was being “dramatic” when she pleaded for a brain scan after suffering months of headaches and pounding in her ears. It turned out she had a brain tumor. Another was ignored as she cried out in pain during a 33-hour labor. She was supposed to be getting pain medication through her epidural, but it had fallen out. Dozens of women complained of torturous pain as their vaginal walls were punctured during an egg retrieval process. They were told their pain was normal, but, in actuality, they were getting saline instead of anesthesia. These are just some of the stories of women who say their pain and suffering has been dismissed or misdiagnosed by doctors. Although these are anecdotal reports, a number of studies support the claim that women in pain often are not taken as seriously as men.

This year, the Journal of the American Heart Association reported that women who visited emergency departments with chest pain waited 29 percent longer than men to be evaluated for possible heart attacks. An analysis of 981 emergency room visits showed that women with acute abdominal pain were up to 25 percent less likely than their male counterparts to be treated with powerful opioid painkillers. Another study showed that middle-aged women with chest pain and other symptoms of heart disease were twice as likely to be diagnosed with a mental illness compared with men who had the same symptoms. “I was told I knew too much, that I was working too hard, that I was stressed out, that I was anxious,” said Ilene Ruhoy, a 53-year-old neurologist from Seattle, who had head pain and pounding in her ears. Despite having a medical degree, Ruhoy said she struggled to get doctors to order a brain scan. By the time she got it in 2015, a tennis ball-sized tumor was pushing her brain to one side. She needed surgery, but first, she rushed home, hugged her 11-year-old daughter and wrote her a letter to tell her goodbye.

Ruhoy did not die on the operating table, but her tumor had grown so large it could not be entirely removed. Now, she has several smaller tumors that require radiation treatment. She said many of her female patients have had experiences similar to hers. “They’re not validated with regards to their concerns; they’re gaslit; they’re not understood,” she said. “They feel like no one is listening to them.”

Doubts about women’s pain can affect treatment for a wide range of health issues, including heart problems, stroke, reproductive health, chronic illnesses, adolescent pain and physical pain, among other things, studies show. Research also suggests that women are more sensitive to pain than men and are more likely to express it, so their pain is often seen as an overreaction rather than a reality, said Roger Fillingim, director of the Pain Research and Intervention Center of Excellence at the University of Florida. Fillingim, who co-wrote a review article on sex differences in pain, said there are many possible explanations, including hormones, genetics and even social factors such as gender roles. Regardless, he said, “you treat the pain that the patient has, not the pain that you think the patient should have.”

Women say reproductive health complaints are commonly ignored

Women often cite pain bias around areas of reproductive health, including endometriosis, labor pain and insertion of an intrauterine device, or IUD. When Molly Hill made an appointment at a Connecticut clinic in 2017 to get an IUD, she said she was warned it would be uncomfortable, but she was not prepared for “horrific” pain. Hill, now 27 and living in San Francisco, recalled that during the procedure, she began crying in pain and shouted at the doctor to stop. “We’re almost done,” she said the doctor told her and continued the procedure. “It was full-body, electrifying, knife-stabbing pain,” she said. After it was done, she said she lay sobbing on the table in physical and emotional pain. “It felt violating, too, to have that pain that deep in your core where you feel the most vulnerable.”

Studies consistently show that women who have not experienced vaginal birth have much higher pain during IUD insertion compared with women who have given birth. A Swedish study found that among 224 women who had not given birth, 89 percent reported moderate or severe pain. One in six of the women said the pain was severe. Although numbing agents and local anesthetics are available, they are rarely used.

In some cases, women have sued physicians for ignoring their pain. Dozens of women sued Yale University claiming that during an egg harvesting procedure at its infertility clinic, they were supposed to be receiving the powerful painkiller fentanyl. But some women were getting only diluted pain medication or none at all, according to lawsuits filed in the state Superior Court in Connecticut. Later, the clinic discovered a nurse had been stealing vials of fentanyl and replacing the painkiller with saline solution. The nurse pleaded guilty last year and was sentenced for tampering with the drugs. One of the plaintiffs, Laura Czar, wrote about her experience for Elle magazine, describing it as “a horrible, gut-wrenching pain,” and told a doctor at the time, “I can feel everything you’re doing.” Despite her protests, the doctor continued. Yale said in a statement that it “deeply regrets” the women’s distress and has “reviewed its procedures and made changes to further oversight of pain control and controlled substances.”

Racial disparities in pain management

For Sharee Turpin, the pain of sickle-cell disease sometimes feels like tiny knives slicing her open. Sickle cell disease is an inherited blood disorder that can cause suffering so severe, its attacks are called “pain crises.” But when Turpin, who is Black, experiences a pain crisis, the 34-year-old does not rush to the ER in Rochester, N.Y. Instead, she combs her hair, mists some perfume and slips on her “Sunday best” in hopes that the doctors and nurses won’t peg her as a drug seeker, she said. Sometimes, Turpin gets a care team that understands her pain. Other times, she is treated as a bother. “I’ve even been told ‘shut up’ by a nurse because I was screaming too loud while I was in pain,” she said.

Abundant research shows racial bias in pain treatment. A 2016 study found half of white medical students and residents held at least one false belief about biological differences between Blacks and Whites, and were more likely to underestimate Black patients’ pain. “The management of pain is one of the largest disparities that we see between Black people and White people in the American health-care system,” said Tina Sacks, an associate professor at the University of California at Berkeley and author of “Invisible Visits: Black Middle-Class Women in the American Healthcare System.”

Labeling women “hysterical” or blaming psychological causes

Research shows men in chronic pain tend to be regarded as “stoic” while women are more likely to be considered “emotional” and “hysterical” and accused of “fabricating the pain.” Carol Klay, a 68-year-old from Tampa, had endured years of chronic pain from arthritis, degenerative disk disease and spinal stenosis. During a hospital stay last year, her doctor noted in her medical record that she was crying “hysterically.” Klay said she was crying because she was unable to sit, stand or walk without agony, and the doctor had removed morphine from her cocktail of pain medications. She wonders whether the doctor “would have called me hysterical if I was a man,” she said. Tampa General Hospital said it could not discuss specific patients, but stated: “Patient treatment plans, including medication orders to reduce pain, are prescribed by multi-disciplinary clinical teams.” Research shows women’s physical pain is also often attributed to psychological causes.

Jan Maderios, a 72-year-old Air Force veteran from Chipley, Fla., said the trauma of having pain dismissed by doctors has stayed with her for years. She saw about a dozen doctors in the early 1970s for pelvic pain. When clinicians could not identify the cause of her pain, she was referred to a psychiatrist.

“You start to doubt yourself after so many medical experts tell you there’s nothing wrong with you,” she said. After a hysterectomy in 1976, Maderios learned that fibroid tumors in her uterus had been the source of her pain. She said learning her pain was real — and physical — “made all the difference in the world.”

Why women’s pain complaints often aren’t taken seriously

During a 33-hour labor with her first child in 2011, Anushay Hossain, 42, of D.C., opted for epidural pain relief but said she still felt it all — every contraction, every cramp and every dismissal of her pain by her medical team. The doctor reassured her that she was getting the maximum dosage of pain medication.

In fact, she wasn’t getting any at all. She said her epidural had slipped out. By the time the error was caught, she was shaking uncontrollably and in need of an emergency Caesarean section, she said. “There’s a pain gap, but there’s also a credibility gap,” said Hossain, author of “The Pain Gap: How Sexism and Racism in Healthcare Kill Women.” “Women are not believed about their bodies —period.”

This pain gap may stem, in part, from the fact that women have historically been excluded from medical research. It wasn’t until 2016 that the National Institutes of Health (NIH) required sex to be considered as a biological variable in most studies it funded. “We’re making progress,” said David Thomas, special adviser to the director of NIH’s Office of Research on Women’s Health. “But we do have a long way to go because there’s this whole institutional approach to doing research — pain and beyond — where it tends to be male-focused.”

Nearly 95 percent of U.S. medical school students said instruction on sex and gender differences in medicine should be included in curriculums, according to a 2015 survey. But only 43 percent said their curriculum had helped them understand those differences and only 34.5 percent said they felt prepared to manage them in a health-care setting.

“It is changing, but it’s changing very slowly,” said Janice Werbinski, immediate past president of the American Medical Women’s Association and chair of the mentorship committee of the association’s Sex and Gender Health Collaborative.

How women can advocate for better pain care

It took decades to solve the mystery of Maureen Woods’s chronic pain. Woods, 64, of Myersville, Md., started having joint pain in her teens and, over the years, told dozens of doctors her pain was “debilitating,” she said. Some told her it was all in her head. In 2017, she was diagnosed with hypermobile Ehlers-Danlos syndrome, a connective tissue disorder often causing loose joints, dislocations and chronic pain. She said women who are not being heard should keep advocating for themselves. “You have to go with your gut — something is wrong and I need to find a doctor who can figure it out,” she said. Marjorie Jenkins, dean of the University of South Carolina School of Medicine Greenville, urged women against feeling pressured to accept an “everything is normal” non-diagnosis. “If your provider does not appear to be listening to you or believing what you’re saying, then you need a new provider,” Jenkins said. “You are the client, you are the customer and you are the owner of your health.”

Women can also take a family member, friend or other support person who can corroborate their stories, said Alyson McGregor, an emergency medicine professor at the University of South Carolina School of Medicine Greenville and author of the book “Sex Matters: How Male-Centric Medicine Endangers Women’s Health and What We Can Do About It.” Particularly in emergency departments, she said, there can be an inherent bias. “There’s this assumption that women are emotional and they’re anxious and that that’s the main issue,” she said.

It’s wild to me that we don’t take women’s health care seriously. We should have better treatment for things like endometriosis and PCOS. I’m in the most excruciating pain, can barely walk and the most I get is an IUD (that is no longer working) thrown at me. But don’t worry, we have tons of cosmetic surgeries directed at women. Buccal fat removal, Brazilian butt lifts, face lifts, etc. All the medical research has gone into making women look more appealing to men and none of it is directed towards women’s health conditions.

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"to endure!"

vincent van gogh ("trees and undergrowth") robert lowell [How will the heart endure?] vincent van gogh [I must endure bad times and the waters will rise, possibly as high as the lips and possibly even higher, how can I know beforehand? But I’ll fight my fight and sell my life dearly and try to win and pull through.] rainer maria rilke [To be loved means to be consumed. To love means to radiate with inexhaustible light. To be loved is to pass away, to love is to endure.] joan didion [Not just to endure it, not just to suffer it, not just to pass through it, but to live in it.] elena ferrante [maybe not even a very orderly mind can endure the discovery of not being loved.] elena ferrante [I will give what I can give, I will take what I can take, I will endure what has to be endured.] han kang [The feeling that she had never really lived in this world caught her by surprise. It was a fact. She had never lived. Even as a child, as far back as she could remember, she had done nothing but endure.] victor frankl [What is to give light must endure burning.]

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Illuminating the brain through art and science

Women’s health is a mess, I know this. Research is unthinkably underfunded and doctors seem to do nothing but ignore you and prescribe birth control.

But it’s not all bad, and when you feel hopeless, consider that there are people just as mad as you, who work in research and medicine.

They may have found a cause for morning sickness and hyperemesis gravidarum! Connecticut just announced a new huge research center just for endometriosis! There’s more and more research about the connection between vitamin D and fertility! Diagnostics and hormone tracking gets a little easier every year!

Here are a few of my favorite recent breakthroughs in women’s health:

Hawes, Geoffrey. “LinkMed to Provide First At-Home Fertility Monitoring in U.S.” EIN News, October 20, 2022. https://www.einnews.com/pr_news/596793974/linkmed-to-provide-first-at-home-fertility-monitoring-in-u-s.

He, Yanan, Jixin Li, Yanjun Qu, Liyuan Sun, Xibo Zhao, Han Wu, and Guangmei Zhang. “Identification and Analysis of Potential Immune-Related Biomarkers in Endometriosis.” Journal of Immunology Research 2023 (January 10, 2023): e2975581. https://doi.org/10.1155/2023/2975581.

Hill, Matthew, and Rhiannon Yhnell. “Device Developed in Bristol Offers ‘revolution’ in Hormone Understanding.” BBC News, June 21, 2023, sec. Bristol. https://www.bbc.com/news/uk-england-bristol-65961378.

Medical Xpress. “Early Blood Test May Unravel Secrets of Pregnancy Loss,” May 17, 2023. https://medicalxpress.com/news/2023-05-early-blood-unravel-secrets-pregnancy.html.

Medical Xpress. “Extra Vitamin D during Pregnancy May Increase Chance of a ‘Natural Birth,’” February 6, 2023. https://medicalxpress.com/news/2023-02-extra-vitamin-d-pregnancy-chance.html.

PR Newswire. “Gynov Helps Women Cope with Polycystic Ovary Syndrome with Two Key Ingredients,” October 20, 2022. https://www.prnewswire.com/news-releases/gynov-helps-women-cope-with-polycystic-ovary-syndrome-with-two-key-ingredients-301654438.html.

PR Newswire. “QvinTM Menstrual Blood Diagnostic Device Receives FDA Approval in Thailand,” February 2, 2023. https://www.prnewswire.com/news-releases/qvin-menstrual-blood-diagnostic-device-receives-fda-approval-in-thailand-301736890.html.

Sommer, Constance. “Decoding Endometriosis: Recent Research Fosters Hope.” Medscape, February 2, 2023. https://www.medscape.com/viewarticle/987811?src=rss.

Watson, Clare. “Scientists Think They’ve Found The Cause of Morning Sickness.” ScienceAlert, June 21, 2023. https://www.sciencealert.com/scientists-think-theyve-found-the-cause-of-morning-sickness.