Women with Endometriosis Often Miss School and Work Due to Pain

By Dr. Rasha Al-Lami

More than two-thirds of women with endometriosis missed school or work due to pain from the condition, in a study of more than 17,000 women between the ages of 15 and 44 in the U.S. That is a key finding of new research published in the Journal of Endometriosis and Uterine Disorders.

Our study also found that Black and Hispanic women were less likely to be diagnosed with endometriosis compared with white women. Interestingly, women who identified as part of the LGBTQ community had a higher likelihood of receiving an endometriosis diagnosis than heterosexual women.

We used data from the National Health and Nutrition Examination Survey, which is administered by the Centers for Disease Control and Prevention, for the period 2011 to 2019. The survey data use adjusted weights to account for the racial composition of U.S. society, meaning our sample of 17,619 women represents 51,981,323 women of the U.S. population.

We specifically examined factors related to quality of life, such as poverty, education and functional impairment, as well as race and sexual orientation.

Endometriosis is a chronic, often painful condition that affects approximately 10% of reproductive-age women worldwide. It occurs when tissues that would normally line the inner surface of the uterus instead occur outside the uterus, such as on the ovaries or even in distant organs such as the lungs or brain. These abnormally located lesions respond to hormonal changes during the menstrual cycle, causing pain when stimulated by the hormones that regulate the menstrual cycle.

Black and Hispanic Women Less Likely to Be Diagnosed

Our study sheds light on how endometriosis, despite its prevalence, remains underdiagnosed and underresearched. We found that 6.4% of reproductive-age women in the U.S. had an endometriosis diagnosis. More than 67% reported missed work or school, or having been unable to perform daily activities, due to pain associated with endometriosis.

Our study highlights disparities in the diagnosis and management of endometriosis among different racial groups. Black women had 63% lower odds of getting an endometriosis diagnosis, and Hispanic women had 55% lower odds compared with non-Hispanic white women. This disparity may reflect historical biases in health care, pointing to the need for more equitable practices.

In addition, our study underscores the importance of considering women’s health across diverse population subgroups, with particular attention to sexual orientation. We found that non-heterosexual lesbian, gay, bisexual, transgender and queer women had 54% higher odds of receiving an endometriosis diagnosis compared with straight women. Our study was the first to examine endometriosis likelihood among non-heterosexual women at the national level in the U.S.

We found no significant association between endometriosis and other quality-of-life indicators such as poverty, education or employment status, which suggests that the condition affects women across various socioeconomic backgrounds.

Our work adds to the growing body of evidence that Black women are less likely to be diagnosed with endometriosis and that their reported pain symptoms are often overlooked.

Explanations for this inequity include health care bias against minority women and limited access to medical care among Black women. Research also shows that many medical professionals as well as medical students and residents believe that Black women have a lower pain threshold compared with the white population.

This is another possible reason that pain symptoms among Black women with endometriosis get neglected. Researchers from the U.K reported the same findings, attributing these disparities to systemic bias and inequitable medical care.

Another study estimates that the lifetime costs associated with having endometriosis are about $27,855 per year per patient in the U.S., costing the country about $22 billion annually on health care expenditures.

Rasha Al-Lami, MD, is a women’s health researcher at Yale University. 

This article originally appeared in The Conversation and is republished with permission.

Medical Research Often Ignores Older Women

By Judith Graham, KFF Health News

Medical research has shortchanged women for decades. This is particularly true of older women, leaving physicians without critically important information about how to best manage their health.

Late last year, the Biden administration promised to address this problem with a new effort called the White House Initiative on Women’s Health Research. That inspires a compelling question: What priorities should be on the initiative’s list when it comes to older women?

Stephanie Faubion, director of the Mayo Clinic’s Center for Women’s Health, launched into a critique when I asked about the current state of research on older women’s health. “It’s completely inadequate,” she told me.

One example: Many drugs widely prescribed to older adults, including statins for high cholesterol, were studied mostly in men, with results extrapolated to women.

“It’s assumed that women’s biology doesn’t matter and that women who are premenopausal and those who are postmenopausal respond similarly,” Faubion said.

“This has got to stop: The FDA has to require that clinical trial data be reported by sex and age for us to tell if drugs work the same, better, or not as well in women,” Faubion insisted.

Consider the Alzheimer’s drug Leqembi, approved by the FDA last year after the manufacturer reported a 27% slower rate of cognitive decline in people who took the medication. A supplementary appendix to a Leqembi study published in the New England Journal of Medicine revealed that sex differences were substantial — a 12% slowdown for women, compared with a 43% slowdown for men — raising questions about the drug’s effectiveness for women.

This is especially important because nearly two-thirds of older adults with Alzheimer’s disease are women. Older women are also more likely than older men to have multiple medical conditions, disabilities, difficulties with daily activities, autoimmune illness, depression and anxiety, uncontrolled high blood pressure, and osteoarthritis, among other issues, according to scores of research studies.

Even so, women are resilient and outlive men by more than five years in the U.S. As people move into their 70s and 80s, women outnumber men by significant margins. If we’re concerned about the health of the older population, we need to be concerned about the health of older women.

As for research priorities, here’s some of what physicians and medical researchers suggested:

Heart Disease

Why is it that women with heart disease, which becomes far more common after menopause and kills more women than any other condition — are given less recommended care than men?

“We’re notably less aggressive in treating women,” said Martha Gulati, director of preventive cardiology and associate director of the Barbra Streisand Women’s Heart Center at Cedars-Sinai, a health system in Los Angeles. “We delay evaluations for chest pain. We don’t give blood thinners at the same rate. We don’t do procedures like aortic valve replacements as often. We’re not adequately addressing hypertension.

“We need to figure out why these biases in care exist and how to remove them.”

Gulati also noted that older women are less likely than their male peers to have obstructive coronary artery disease — blockages in large blood vessels —and more likely to have damage to smaller blood vessels that remains undetected. When they get procedures such as cardiac catheterizations, women have more bleeding and complications.

What are the best treatments for older women given these issues? “We have very limited data. This needs to be a focus,” Gulati said.

Brain Health

How can women reduce their risk of cognitive decline and dementia as they age?

“This is an area where we really need to have clear messages for women and effective interventions that are feasible and accessible,” said JoAnn Manson, chief of the Division of Preventive Medicine at Brigham and Women’s Hospital in Boston and a key researcher for the Women’s Health Initiative, the largest study of women’s health in the U.S.

Numerous factors affect women’s brain health, including stress — dealing with sexism, caregiving responsibilities, and financial strain — which can fuel inflammation. Women experience the loss of estrogen, a hormone important to brain health, with menopause. They also have a higher incidence of conditions with serious impacts on the brain, such as multiple sclerosis and stroke.

“Alzheimer’s disease doesn’t just start at the age of 75 or 80,” said Gillian Einstein, the Wilfred and Joyce Posluns Chair in Women’s Brain Health and Aging at the University of Toronto. “Let’s take a life course approach and try to understand how what happens earlier in women’s lives predisposes them to Alzheimer’s.”

Mental Health

What accounts for older women’s greater vulnerability to anxiety and depression?

Studies suggest a variety of factors, including hormonal changes and the cumulative impact of stress. In the journal Nature Aging, Paula Rochon, a professor of geriatrics at the University of Toronto, also faulted “gendered ageism,” an unfortunate combination of ageism and sexism, which renders older women “largely invisible,” in an interview in Nature Aging.

Helen Lavretsky, a professor of psychiatry at UCLA and past president of the American Association for Geriatric Psychiatry, suggests several topics that need further investigation:

• How does the menopausal transition impact mood and stress-related disorders?

• What nonpharmaceutical interventions (yoga, meditation, tai chi, etc.) can help older women recover from stress and trauma?

• What combination of interventions is likely to be most effective?

Cancer

How can cancer screening recommendations and cancer treatments for older women be improved?

Supriya Gupta Mohile, director of the Geriatric Oncology Research Group at the Wilmot Cancer Institute at the University of Rochester, wants better guidance about breast cancer screening for older women, broken down by health status. Currently, women 75 and older are lumped together even though some are remarkably healthy and others notably frail.

Recently, the U. S. Preventive Services Task Force noted “the current evidence is insufficient to assess the balance of benefits and harms of screening mammography in women 75 years or older,” leaving physicians without clear guidance.

“Right now, I think we’re underscreening fit older women and over screening frail older women,” Mohile said.

The doctor also wants more research about effective and safe treatments for lung cancer in older women, many of whom have multiple medical conditions and functional impairments. The age-sensitive condition kills more women than breast cancer.

“For this population, it’s decisions about who can tolerate treatment based on health status and whether there are sex differences in tolerability for older men and women that need investigation,” Mohile said.

Bone Health, Functional Health and Frailty

How can older women maintain mobility and preserve their ability to take care of themselves?

Osteoporosis, which causes bones to weaken and become brittle, is more common in older women than in older men, increasing the risk of dangerous fractures and falls. Once again, the loss of estrogen with menopause is implicated.

“This is hugely important to older women’s quality of life and longevity, but it’s an overlooked area that is understudied,” said Manson of Brigham and Women’s.

Jane Cauley, a distinguished professor at the University of Pittsburgh School of Public Health who studies bone health, would like to see more data about osteoporosis among older Black, Asian, and Hispanic women, who are undertreated for the condition. She would also like to see better drugs with fewer side effects.

Marcia Stefanick, a professor of medicine at Stanford University School of Medicine, wants to know which strategies are most likely to motivate older women to be physically active. And she’d like more studies investigating how older women can best preserve muscle mass, strength, and the ability to care for themselves.

“Frailty is one of the biggest problems for older women, and learning what can be done to prevent that is essential,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Research Suggests Chronic Pain Should be Treated Differently in Men and Women

By Pat Anson, PNN Editor

Why are women more likely than men to suffer from fibromyalgia, osteoarthritis, irritable bowel syndrome, and other chronic pain conditions?  

Various theories have been proposed over the years, such as gender bias in healthcare, the lingering effects of childhood trauma, and women “catastrophizing” about their pain more than men.

Now there’s a new theory, which could radically change how men and women are treated for pain.

In a groundbreaking study published in the journal BRAIN, researchers at University of Arizona Health Sciences identified two substances – prolactin and orexin B – that appear to make mice, monkeys and humans more sensitized to pain. Prolactin is a hormone that promotes breast development and lactation in females; while orexin B is a neurotransmitter that helps keep us awake and stimulates appetite.

Both males and females have prolactin and orexin, but females have much higher levels of prolaction and males have more orexin.  In addition to promoting lactation and wakefulness, both substances also appear to play a role in regulating nociceptors, specialized nerve cells near the spinal cord that produce pain when they are activated by a disease or injury.

“Until now, the assumption has been that the driving mechanisms that produce pain are the same in men and women,” says Frank Porreca, PhD, research director of the Comprehensive Center for Pain & Addiction at UA Health Sciences. “What we found is that the basic, underlying mechanisms that result in the perception of pain are different in male and female mice, in male and female nonhuman primates, and in male and female humans.”

Porreca and his colleagues made their discovery while researching the relationship between chronic pain and sleep.  Using tissue samples from male and female mice, rhesus monkeys and humans, they found that prolactin only sensitizes nociceptors in females, regardless of species, while orexin B only sensitizes the nociceptors of males.

The research team then tried blocking prolactin and orexin B signaling, and found that blocking prolactin reduced nociceptor activation only in female cells, while blocking orexin B only affected the nerve cells of males. In effect, they found that there are distinctive “male” and “female” nociceptors.  

“The nociceptor is actually different in men and women, different in male and female rodents, and different in male and female non human primates. That’s a remarkable concept, because what it's really telling us is that the things that promote nociceptive sensitization in a man or a woman could be totally different,” Porreca told PNN. “These are two mechanisms that we identified, but there are likely to be many, many more that have yet to be identified.”

Once such mechanism could be calcitonin gene-related peptides (CGRPs), a protein that binds to nerve receptors in the brain and trigger migraine pain. In a recent study, Porreca suggested that sexual differences may be the reason why migraine drugs that block CGRPs are effective in treating migraine pain in women, but are far less effective in men.  

Until these differences are more fully understood, Porreca says clinical trials should be designed to have an equal number of men and women. That way differences between the sexes could be more easily recognized and applied in clinical practice.

For example, therapies that block prolactin may be an effective way to treat fibromyalgia in women, while drugs that block orexin B might be a better way to treat certain pain conditions in men.

“We have an opportunity to develop therapies that could be more effective in treating pain in a man or in a woman than the generalized kinds of therapies that we use now,” said Porreca. ‘I think it's critically important that these pain syndromes really be taken very seriously. And that we find better ways of treating female pain and also male pain.” 

Another Look at the Opioid Risk Tool

By Dr. Lynn Webster

I'm a proud grandfather to two young granddaughters. They are my world. Watching the U.S. Supreme Court rescind women's right to decide what to do with their own bodies made me feel angry that my granddaughters will be subjected to dehumanizing discrimination.

This tyranny against women extends beyond the Supreme Court’s decision over Roe vs. Wade.

I have read multiple accounts of women who are being denied access to opioid medication because they acknowledge a history of toxic adverse experiences as children or adolescents. Many such instances have occurred after women completed the Opioid Risk Tool, a questionnaire that asks a person if they have a history of preadolescent sexual abuse.

The refusal to prescribe opioids to women with a history of preadolescent sexual abuse is a defensive measure by providers to avoid being accused of causing an Opioid Use Disorder (OUD).

Why I Developed the Opioid Risk Tool

The Opioid Risk Tool (ORT) that I developed more than 20 years ago was designed to assess the risk of someone who was prescribed opioids for chronic pain treatment showing aberrant drug-related behavior.

The ORT was a simple questionnaire that could be administered and scored in less than a minute. It was developed at a time when we had no way to assess the risk of developing opioid abuse in patients who were prescribed an opioid for non-cancer pain. We needed a tool to help evaluate whether the risk of potential harm from opioids outweighed the potential good for each individual.

I never intended for doctors to use the ORT to determine who should or shouldn’t be prescribed an opioid. My goal was to help doctors identify patients who might require more careful observation during treatment, not to deny the person access to opioids.

Since abuse and addiction are diagnosed by observing atypical behaviors, knowing which patients are at greatest risk for displaying those behaviors is useful in establishing appropriate levels of monitoring for abuse. This was intended to protect the patient from potential harm. It was never supposed to be used as an excuse to mistreat patients.

The original version of the ORT contained 10 questions, including whether a patient had a history of preadolescent sexual abuse. Women who answered "yes" scored 3 points; while men who responded affirmatively scored 0 points. The higher you scored, the more closely your doctor would need to monitor your opioid use during your treatment.

The ORT questionnaire was based on the best evidence at the time. Multiple studies have since confirmed the validity of the questions used in the questionnaire. However, many people have criticized the question that asks about a history of preadolescent sexual abuse because of a perceived gender inequity. In addition, some doctors have generalized the ORT's question about preadolescent trauma so that it applies to a history of female sexual abuse at all ages.

I have written that the ORT has been weaponized by doctors who are looking for a reason to deny patients -- particularly, women -- adequate pain medication.

There are doctors who use their power to determine whether to treat a woman's chronic pain with an opioid or allow her to suffer needlessly based on the ORT's answers. This is no less malevolent than a forced taper resulting in suicides or the use of the CDC opioid prescribing guideline to criminally charge providers for not following the CDC's recommendation. In all of these situations, an injustice is being committed against innocent people.

It is also not much different from the Supreme Court’s decision to ignore a woman’s right to access full reproductive rights. Both are attacks on women.

Fortunately, Martin Cheatle, PhD, and his team published a revised Opioid Risk Tool in the July 2019 edition of the Journal of Pain. In his research, Dr. Cheatle found that a revised ORT using 9 questions instead of 10 was as accurate as, if not better than, the original ORT in weighing the risk of patients for OUD. The revised ORT eliminates the use of a woman's sexual abuse history as a risk factor.

At a time when females have had their human rights taken away by a Supreme Court vote, it is especially appropriate to reconsider how we assess risks for potential opioid abuse for women.

It distresses me to know that, while the original ORT served to help assess the risk opioids posed for individuals, it has also caused harm. Since the question about a woman's sexual abuse history does not provide any additional benefit, there is no reason to retain it. The revised ORT should be used instead of the original ORT.

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharamaceutical industry.

Lynn is the author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. You can find him on Twitter: @LynnRWebsterMD.

Rare Disease Spotlight: Vulvodynia

By Barby Ingle, PNN Columnist

This month in our Rare Disease Spotlight we’ll look at vulvodynia, which causes chronic pain and discomfort around the vulva, the opening of the vagina. About 15 percent of women will have vulvar pain at some point in their lives.  

I first learned about vulvodynia a few years ago at a medical conference. It was described to me by a woman who has it as the feeling of a chain saw cutting into her private parts. Quite the visual description. It made me stop to pay attention.  

There are many causes for vaginal pain. These range from hormonal changes, nerve conditions, eczema, psoriasis, endometriosis, anxiety, depression, vaginal atrophy and vaginal dryness. Often, multiple causes contribute to vaginal pain. 

There are two main types of vulvodundia: generalized vulvodundia and localized vulvodunia. The latter is also known as vestibulodynia, which occurs when there is any kind of touch or pressure near the vaginal opening that causes irritation. Burning, stinging or itching can be triggered by tampons, cotton swabs, tight clothing, toilet paper and sexual contact.  

For women with generalized vulvodynia, the pain occurs spontaneously and has no known cause. Often we focus on women when we look at pelvic pain. But men can also experience pelvic pain and conditions. A similar disorder to vulvodynia is known as male genital dysaesthesia.

Vulvodynia can resolve within months or become chronic. It can be so painful that some activities feel unbearable, such as sitting for long periods, riding a bike or having sex. If you experience pelvic pain, you should avoid those activities until you see an OB/GYN doctor, physical therapist or primary care provider.  

Some of the symptoms of vulvodynia include vaginal dryness, itching, or inflammation. These can appear with pain in the vagina or pelvis. Pain can increase during sexual intercourse. It may also cause sexual dysfunction, uncomfortable tingling and burning pain.  

Fortunately, there are some potentially helpful treatments. These options include acupuncture, biofeedback, cognitive behavioral therapy, nerve blocks, nerve pain medication, and oral and topical analgesics. You can also try a pelvic floor therapy to strengthen and desensitize the pelvic region. Avoiding irritants and practicing good hygiene may also help. 

There are some new medications being developed in clinical trials for vulvodynia, but they could take years before they are available. In the meantime, physicians may provide patients with vaginal estrogen in low doses, as well as lidocaine. Systemic hormone therapy is associated with an increased risk of heart attack, stroke, blood clots and other complications. Be sure to talk to your provider about the risks involved with vaginal estrogen treatment before starting hormone therapy.

If you have vulvodynia, there are some private Facebook groups where you can get support, such as Vulvodynia Support and Vulvar Vestibulitis Syndrome (VVS) & Vestibulodynia & Vulvodynia Awareness. The National Vulvodynia Association is also a good resource.

So much emphasis in our society is put on sexual health, especially for men. Having lived through endometriosis myself, I know pelvic health is important. Women deserve good sexual health too.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

Genetics May Explain Why Women Are More Likely to Have Chronic Pain

By Pat Anson, PNN Editor

It’s no secret that women are far more likely than men to experience fibromyalgia, migraine, osteoarthritis and other chronic pain conditions. Why that is has been linked to everything from gender bias in healthcare to childhood trauma to women “catastrophizing” about their pain.  

A new study published by UK researchers in PLOS Genetics suggests that part of the reason is genetic differences between men and women.

In the largest genetic study of its kind, researchers at the University of Glasgow looked for genetic variants associated with chronic pain in over 209,000 women and 178,000 men who donated their medical and genetic data to the UK Biobank.

The researchers also investigated whether the activity of those genes was turned up or down in tissues commonly involved with chronic pain.

They found that 37 genes in men and 30 genes in women were active in the dorsal root ganglion, a cluster of nerves in the spinal cord that transmit pain signals from the body to the brain.

The findings support previous work by the same research team, which found that chronic pain originates to a large extent in the brain, and to a lesser degree in parts of the body where people “feel” pain. The study also suggests genetic differences between men and women may affect the immune system and how the two sexes respond to medication.

“Overall, our findings indicate the existence of potential sex differences in chronic pain at multiple levels… and the results support theories of strong nervous system and immune involvement in chronic pain in both sexes,” wrote lead author Keira Johnston of the University of Glasgow. "Our study highlights the importance of considering sex as a biological variable and showed subtle but interesting sex differences in the genetics of chronic pain."

Gender Bias

While genetic differences may partially explain why women are more likely to feel pain than men, gender biases may explain why they are treated differently, according to another study recently published in the Journal of Pain.

Researchers at the University of Miami found that when volunteers observed male and female patients expressing the same amount of pain, they had a tendency to view female patients' pain as less intense and more likely to benefit from psychotherapy.

The study consisted of two experiments in which adult volunteers were asked to view videos of men and women who suffered from shoulder pain. The videos came from a database of real patients experiencing different degrees of pain, and included their self-reported pain levels when moving their shoulders in a series of exercises.

The volunteer observers were asked to gauge the amount of pain they thought the patients in the videos experienced. They were also asked how much pain medication and psychotherapy they would prescribe to each patient, and which of the treatments they thought would be more effective.

The study found that female patients were perceived to be in less pain than the male patients — even when they reported and exhibited the same pain levels. Researchers believe those perceptions were partially explained by gender-based stereotypes.

"If the stereotype is to think women are more expressive than men, perhaps 'overly' expressive, then the tendency will be to discount women's pain behaviors," said co-author Elizabeth Losin, PhD, assistant professor of psychology at the University of Miami.

"The flip side of this stereotype is that men are perceived to be stoic, so when a man makes an intense pain facial expression, you think, 'Oh my, he must be dying!' The result of this gender stereotype about pain expression is that each unit of increased pain expression from a man is thought to represent a higher increase in his pain experience than that same increase in pain expression by a woman."

The volunteer observers were also more likely to choose psychotherapy as a treatment than pain medication for the female patients.

Interestingly, the gender of the observers did not influence pain estimation. Both men and women interpreted women's pain to be less intense.

"I think one critical piece of information that could be conveyed in medical curricula is that people, even those with medical training in other studies, have been found to have consistent demographic biases in how they assess the pain of male and female patients and that these biases impact treatment decisions," said Losin.

"Critically, our results demonstrate that these gender biases are not necessarily accurate. Women are not necessarily more expressive than men, and thus their pain expression should not be discounted."

The Gaslighting of Pain

By Ann Marie Gaudon, PNN Columnist

It’s become a buzzword. “Gaslighting” is a term used to describe the repeated denial of someone’s reality in an attempt to invalidate them. Its origins can be found in a misogynistic 1944 film showcasing a husband trying to convince his wife that she is insane.

To be clear, gaslighting is a form of emotional abuse and is not exclusive to romantic relationships. This attempt to manipulate a person’s reality is systemic and can be seen in social media, politics, cable news and even healthcare. When a medical professional invalidates, dismisses or even leads a patient to question their own thoughts and experiences, that is traumatic and abusive.

It is hardly news that women are more often told than men that their pain and other symptoms are emotionally-based and psychogenic: not real. Years ago, I attended a lecture given by a young woman detailing her experience with significant knee pain. She had seen several doctors to no avail; she was told the pain was all in her head. One doctor said the cause of her pain was due to “wearing her jeans too tightly and this is a common problem with teenage girls.”

She wondered out loud if this would have been her diagnosis if she were a male teenager. Eventually she did obtain a correct diagnosis for her knee pain which was osteosarcoma – the very same cancer that Canadian athlete and national hero Terry Fox succumbed to.

 A 2015 study interviewed women who had been hospitalized due to a heart attack but were reluctant to seek medical care, citing anxiety about “being perceived as complaining about minor concerns” and “feeling rebuffed or treated with disrespect.”

Since being diagnosed and treated for the female-only disease of “hysteria” in the 19th century, women’s emotions continue to be used as the cause for all that ails them. This inherent gender bias in healthcare is another form of gaslighting.

“We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” Linda Blount, president of the Black Women’s Health Imperative, told BBC Future. “Their bias absolutely makes its way into the exam room.”

Your chances of being subjected to medical gaslighting increase if you are not white, cisgender or able-bodied -- essentially any marginalized group. However, do not be misled into thinking that all white males will be cared for with dignity and medical acuity. I have had conversations with men who have been dismissed time and again, and had their substantial suffering completely invalidated with the likes of “that [diagnosis] would never bother anyone.” Or they cannot even get a diagnosis and so are labelled as malingerers.  

‘You’re Making This Up’

At times, I am the only person in a patient’s life who actually has validated their pain, because their family does not believe them either. “You’re making this up” or “You’re not getting better because you don’t want to get better” are common themes told to my victimized clients. I watch as their teary eyes fluctuate hurriedly from boring into mine to staring down at the floor as they question their own sanity and if their pain is indeed real.

What happens next can lead to disastrous results. When physicians inappropriately conclude that a patient’s symptoms are all in their head, they delay a correct diagnosis – just like the young woman with knee pain. This can be especially dangerous for patients with rare diseases who already wait longer to be diagnosed as it is. According to a survey of 12,000 European patients, receiving a psychological misdiagnosis can make a proper diagnosis of a rare disease take up to 14 times longer.

The pain patients in my practice (as well as myself) have been told it’s just normal aches and pains, there’s nothing wrong with you, condescended to, yelled at, disbelieved, laughed at, mocked, called names, and dismissed in all manners of arrogance and ignorance.

We’re on the cusp of 2021 and I am still telling my pain patients not to go to any appointment alone because that makes you even more vulnerable to mistreatment. Another person in the room with you can temper abusive treatment by being there as a witness. No one suffering should have to go to any lengths to receive the care they deserve. However, that is reality.

We’ve come too far just to lie down and accept medical gaslighting. Do what you can to defeat this. Find a medical provider that you can connect with; someone who listens, is honest, and frank with you. I have had the privilege of having one physician who completely fits the bill and am now searching for the next.

Become your own advocate. Do not put up with someone who is condescending, arrogant, or mistreating you – fire this person. You and your health need to be taken seriously. Watch for biases and do report a gaslighting doctor. Go to the clinical supervisor, board of the hospital, and the regulating college or agency. Be direct and honest about how you were treated and demand they take action.

There is always a legal option as well if you were harmed physically and/or mentally by the grievous actions of a gaslighting physician. Whatever decision you make, above all else, do not accept this abuse. We must all speak up and speak out!

“Nothing strengthens authority so much as silence.”
Leonardo da Vinci

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

Sex Bias Persists in Pain Research

By Pat Anson, PNN Editor

It’s long been known that women are more likely than men to have chronic pain conditions such as fibromyalgia, rheumatoid arthritis, irritable bowel syndrome (IBS) and migraine. Women are also more likely to feel more severe, recurring and longer lasting pain.

Why then are women less likely to receive pain treatment? And why are some treatments less effective for women?

One obvious reason is that men and women have different biology and process pain differently. Another is a “blind spot” in pain research, which is more focused on studying males than females, according to a new review published in the journal Nature Reviews Neuroscience.

"The pain literature is biased such that, because of the overwhelming use of male animals in experiments, we are increasingly learning about the biology of pain in males. And wrongly concluding that this is the biology of pain. It's only the biology of pain in males," says author Jeffrey Mogil, PhD, a Professor of Psychology and Anesthesia at McGill University in Montreal.

Mogil reviewed over 1,000 research articles published in the journal Pain between 2015 and 2019, and found a distinct change in the sex of laboratory animals used in research. In 2015, for example, 80 percent of the studies only used male rodents. By 2019, half of studies were male-only.

SOURCE: Nature Reviews Neuroscience.

The trend towards using both male and female animals may sound like a promising change in research design. But when Mogil looked more closely at sex differences in pain literature, he found clear evidence that a male bias still exists in pain research.

"The very ideas we come up with for experiments, are based on experiments in males and therefore they work in males and not in females,” says Mogil.

Even in studies that included both male and female rodents, Mogil found that the research was often geared toward the males’ response. In experiments that “worked out” -- meaning the scientific hypothesis being tested was found to be true -- over 72% of the male rodents had a positive response, while only about 28% of the female rodents did. That strongly suggests the research was biased even before the experiments began.

"If there were no bias in the literature and there were a number of papers where the experiment worked in one sex and not the other, it should work in females just as often as in males,” explained Mogil. “Why has this happened? Because the hypothesis that that experiment tested out was generated based on prior data from experiments on only males. So, of course, it only worked in males."

The bias in research can have lasting effects on pain treatment and may help explain why some analgesic medications are more effective when taken by men.

"This research suggests that lots of what's in the pipeline right now, if it works in anyone at all, will largely be men. Whereas the clear majority of chronic pain patients have been and continue to be women," Mogil said.

Steps have been taken to reduce bias in pain research. If they want to get government funding, researchers in the United States, Canada and several European countries are now required to evaluate both sexes in their research. Mogil is optimistic those policies will eventually make a difference, but it may take awhile to undo decades of research that focused primarily on male animals.

“Performing biomedical experiments in both sexes is not only the ethically correct thing to do but also the scientifically correct thing to do, especially if we wish to reverse the particularly unimpressive track record of clinical trial success in the past few decades,” Mogil wrote.

Domestic Abuse Survivors Have Twice Risk of Fibromyalgia

By Pat Anson, PNN Editor  

Ava Shypula had a difficult childhood growing up in communist Poland. She was physically abused by her father and was left home alone for hours, sometimes days at a time. Ava became chronically ill at a young age. 

“My symptoms began very early, almost as far as I remember. They started with joint pain, chills and constant flu like symptoms, with a sore, inflamed throat,” Ava recalls. 

Even after marrying a doctor and leaving Poland to begin a new life in New York City, Ava’s symptoms persisted. 

“My then-husband ignored my symptoms, focusing on his own career and studying in order to re-certify his medical diploma,” she said. “The fear of failure, pride and ambition to succeed only advanced the illness, which at that time was diagnosed as chronic fatigue syndrome.” 

Only after her marriage ended in a nasty divorce did Ava begin to understand her illness and the role played by stress. She was diagnosed with fibromyalgia – a poorly understood disease characterized by widespread body pain, fatigue, poor sleep, anxiety and depression. 

A neurologist prescribed Lyrica and Ava’s symptoms began improving. 

“For many years women with undiagnosed fibromyalgia had been dismissed as hysterics having emotional issues,” she said. “Together with a fantastic help from my psychiatrist, my symptoms slowly but noticeably diminished, not fully, but they have become more manageable.”

Abuse Causes Physical and Psychological Stress

Ava Shypula’s story is not unique. In fact, it is all too common, according to a large new study that found female survivors of domestic abuse have nearly twice the risk of developing widespread body pain and chronic fatigue syndrome (CFS).

Researchers at the Universities of Birmingham and Warwick in the UK examined the medical records of over 18,500 women who suffered domestic abuse and compared them to 74,000 women who did not. Health data was collected from 1995 to 2017.

The study, published in the Journal of Interpersonal Violence, is one of the first designed to assess the relationship between women who have been abused and the likelihood of them developing long-term illnesses such as fibromyalgia.

"Survivors of domestic abuse can experience immense physiological and psychological stress,” said Professor Julie Taylor of the University of Birmingham's School of Nursing. “The changes that happen in the body as a result of such stress can lead to a multitude of poor health outcomes such as what we see in our study here.

"This is a very complex relationship and it is important to emphasize that not all women who have been abused will develop fibromyalgia or CFS, and that having these conditions does not mean there has been domestic abuse in the past."

Previous research has found that about one in every four women in the UK have experienced some form of domestic abuse, with a large proportion of those cases being violence at the hands of an intimate partner. Globally, about one in three women suffer domestic abuse.

"Considering the prevalence of domestic abuse, and the fact that patients experiencing fibromyalgia and CFS often face delays in diagnosis due to a limited understanding generally of how these conditions are caused, it is important for clinicians to bear in mind that women who have survived abuse are at a greater risk of these conditions,” said Dr. Joht Singh Chandan of the University of Birmingham's Institute of Applied Health Research and Warwick Medical School.

"We hope these first of their kind research findings will change healthcare practice and will be of assistance in the early diagnosis of fibromyalgia and CFS in women who have been abused."

Ava Shypula hopes that sharing her story will help other women understand their illness, get treatment and make lifestyle changes to reduce stress. She’s learned that avoiding cold temperatures, staying warm and getting a good night’s sleep will reduce her symptoms. 

“Encourage them to fight back instead of resigning and living with pity and depression, which I have experienced at different points of my life,” she told PNN. “I have found that emotional support plays a major role to fight with this illness.”

Young Women Abused as Children Have More Pain

By Pat Anson, PNN Editor

Young adult women with a history of being physically or emotionally abused as children report higher levels of pain than women not abused in childhood, according to a new study.

The link between child abuse and chronic pain in adulthood is a controversial one, but there are a number of studies that have found an association between the two. This was one of the first to follow abused adolescents into adulthood.

Researchers at Cincinnati Children's Hospital Medical Center recruited 477 girls between the ages of 14 and 17 and followed them up to age 19. About half the girls experienced neglect or maltreatment, such as physical, emotional or sexual abuse that was substantiated by child welfare records. The other half acted as a control group.

Five years later, researchers contacted the women again and surveyed them about their pain as young adults. Those who were maltreated as children reported higher pain intensity, a greater number of pain locations, and were more likely to have experienced pain in the previous week than those who were not mistreated as children.

The young women who experienced post-traumatic stress as teenagers had the highest risk of pain.

"Child maltreatment and post-traumatic stress symptoms (PTSS) in adolescence work together to increase risk of pain in young adulthood," says lead author Sarah Beal, PhD, a developmental psychologist at Cincinnati Children's Hospital Medical Center. "The link isn't simple and could be due to an increase in inflammation, maintaining a state of high-alert in activating stress responses, or a number of other psychological or behavioral mechanisms.

“Women with a child maltreatment history were significantly more likely to experience pain and report a higher number of pain locations in young adulthood. Furthermore, among women who experienced any pain, those who were maltreated reported somewhat higher pain intensity. Results also showed that elevated PTSS during adolescence were associated with pain in adulthood and more widespread pain.”

Beal, who reported her findings in the journal Pain, says identifying and treating childhood trauma at an early age could help prevent chronic pain from developing in adulthood.  

“By intervening to address stress symptoms and poor coping following maltreatment, we may be able to reduce the impact of maltreatment on young adult health sequelae -- at least for pain,” said Beal.

Previous research has found an association between childhood trauma and chronic illness in adults.

A recent study found that women who experienced physical or emotional abuse as children have a significantly higher risk of developing lupus, a chronic autoimmune disease.

Another study found that adults who experienced adversity or trauma as children were more likely to have mood or sleep problems as adults -- which in turn made them more likely to have physical pain.

And a large survey found that nearly two-thirds of adults who suffer from migraines experienced emotional abuse as children.

Women Most at Risk for ‘iPad Neck’

By Pat Anson, Editor

If you have neck and shoulder pain and regularly use an iPad or tablet device, there’s a good chance the two are connected. Especially if you’re a young woman.

A recent study of over 400 university students, alumni and staff found that 60 percent have persistent pain in the neck and upper shoulders – often caused by slouching or bending to watch their iPads or tablet computers. Over two-thirds (68%) said they experienced symptoms while using their tablets.

"Such high prevalence of neck and shoulder symptoms, especially among the younger populations, presents a substantial burden to society," said lead author Szu-Ping Lee, PhD, a physical therapy professor at the University of Nevada Las Vegas. His study was published last week in the Journal of Physical Therapy Science.

The top risk factor for “iPad neck” was surprising. Women were twice as likely as men to experience neck and shoulder pain during tablet use.

“Our study revealed that females and individuals with current musculoskeletal symptoms were more likely to be at risk for neck and shoulder symptoms,” Lee wrote.

“Certain postures during use were also identified as important risk factors, specifically sitting without back support and with the tablet in lap were significantly associated with symptoms during use.”

UNLV IMAGE

The most frequently reported symptoms were stiffness, soreness or aching pain in the neck, upper back, shoulder, arms, hands or head. Most of those surveyed (55%) reported moderate discomfort, but 10 percent said their symptoms were severe and 15 percent said it affected their sleep. Less than half (46%) said they stopped using the devices when they felt discomfort.

Lee says the findings concern him, especially given the growing popularity of tablets, e-book readers, and other devices for personal, school and business purposes. At PNN, we know that about 10 percent of our readers use iPads or tablets.

Almost half of the tablet users surveyed use their devices for three or more hours each day. Flexing the neck forward for long periods of time puts pressure on your spine, causing neck and shoulder pain. Sedentary behavior and bad posture while reading are also contributing factors.

Researchers say many students sit cross-legged on the floor when studying on their tablets. Interestingly, women were far more likely (77%) to use their tablets while sitting on the floor than men (23%).

Lee offered these tips to avoid iPad neck:

• Sit in a chair with back support.
• Use a posture reminder device -- small, wearable devices that beep to alert you when you're slouching.
• Place your iPad on a stand (rather than a flat surface) and attach a keyboard to achieve a more upright posture.
• Exercise to strengthen your neck and shoulder muscles.

"Using these electronic devices is becoming a part of our modern lives," Lee said. "In order to reduce the risk of developing long-term neck and shoulder problems, we need to think about how technology like tablet computer affects human ergonomics and posture."

‘Catastrophizing’ Doesn’t Mean Pain Is All in Your Head

(Editor’s Note: Last month we published a story about pain “catastrophizing,” and how a new study showed that women who have negative or emotional responses to pain are more likely than men to be prescribed opioid medication. Several readers were offended by the study, as well as our story, feeling they belittled women and their ability to handle pain.

The two co-authors of the study, which was published in the journal Anesthesiology, kindly agreed to address some of these concerns and further explain their research.)

By Yasamin Sharifzadeh and Beth Darnall, PhD, Guest Columnists

Thank you for taking the time to share your thoughts and ideas about our recently published paper on opioid prescription and pain catastrophizing. We would like to address a few concerns brought up and to clarify some of the statements made in our publication.

First and foremost, our study analyzed pain catastrophizing, which has a different and more nuanced definition than terms such as complaining or worrying, that are commonly used to describe it.

Pain catastrophizing is measured via a 13 question survey, with specific subsets used to assess varying aspects of the way we emotionally approach pain. This term is not meant to downplay or discredit pain or its associated emotions. In fact, we use it to better understand the many manifestations of pain.

But for some people, the term “catastrophizing” is offensive. We hear those negative responses, but in clinic, when the term is described, many patients will say:  “I do that!  That is totally me.”  So while not everyone is offended by the term, some people are. It’s important to know that catastrophizing does not mean that pain is all in your head, or your fault, or that you did anything wrong.

Our nervous systems are hardwired to respond to pain with alarm. It is actually an acquired skill to learn to disengage one’s attention to pain and develop strategies that counteract this agitation in the nervous system. Otherwise, it can set us up to have greater distress and pain. This is true for everyone, but for some people the alarm in the nervous system rings louder. 

We sometimes use “negative mindset” as a way to describe difficulties in disengaging from attention to pain or focusing on worsening pain or worst-case scenarios. The science is clear on how our thoughts, attention, and emotions impact pain and pain treatment response.

Whatever the term used to describe this specific form of pain-related distress, it is highly predictive of response to various pain treatments. For this reason, it is important that we identify it and treat it. Not addressing these issues would be neglectful, given the degree to which one’s mindset can undermine treatment response and contribute to suffering.

Men and Women Catastrophize

We also wish to clarify some of the findings of the study. We found that men and women, in a general sample of chronic pain patients, had similar levels of pain catastrophizing. In other words, men and women do not significantly differ in their pain-related emotions. Also, consistent with previous peer-reviewed work, we found that women reported higher than average pain levels.

We took our robust analysis a few steps further to show that in women, pain-related emotions played a bigger role in the likelihood of having an opioid prescription than it did in men. Again, this is not saying that pain catastrophizing played no role in opioid prescribing for men -- just that it had a higher effect in women despite equal levels of pain catastrophizing between the sexes.

Overall, we view our study as a stepping-stone towards an improved understanding of both the physical and emotional manifestations of pain.

Pain catastrophizing is a unique term that describes just one of many ways that we can look at pain-related emotional distress, and it is not meant to discount pain in any way. Rather, it validates the importance of treating pain comprehensively in order to attain better results.

We hope that this study helps people with pain look at pain from many angles and work with their physician to find the solution that works best for them.

Yasamin Sharifzadeh is lead author of the study. She is a second year medical student at Virginia Commonwealth University.

Beth Darnall, PhD, is senior author of the study.  She is a clinical associate professor at Stanford University School of Medicine and author of 3 books:    "Less Pain, Fewer Pills," "The Opioid-Free Pain Relief Kit," and a forthcoming book entitled “Psychological Treatment for Chronic Pain.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Women Who ‘Catastrophize’ More Likely to Get Opioids

By Pat Anson, Editor

Women who complain or focus negatively on their pain – a psychological condition known as catastrophizing -- not only feel chronic pain more intensely, they are more likely than men to be prescribed opioids for the same condition, according to a new study.

"Our research underscores how psychological factors such as negative thoughts or emotions have the capacity to influence how we experience pain and the likelihood that someone will be taking prescribed opioids," said Beth Darnall, PhD, a clinical associate professor at Stanford University School of Medicine and senior author of the study published in the journal Anesthesiology.

"The findings suggest that pain intensity and catastrophizing contribute to different patterns of opioid prescribing for male and female patients, highlighting a potential need for examination and intervention in future studies."

Previous studies have found that pain catastrophizing can have a powerful influence on a patient’s sensory perception, and may magnify the intensity of chronic pain by as much as 20 percent.

In their retrospective study, Darnall and her colleagues analyzed clinical data from nearly 1,800 adult chronic pain patients at a large outpatient pain treatment center. Most of the patients said they were prescribed at least one opioid medication.

For women, pain catastrophizing was strongly associated with having an opioid prescription, even when there were relatively low levels of pain. Pain intensity was a stronger predictor of opioid prescriptions in men.

"Our findings show that even relatively low levels of negative cognitive and emotional responses to pain may have a great impact on opioid prescribing in women," said lead author Yasamin Sharifzadeh, a medical student at Virginia Commonwealth University.

It was Sharifzadeh who first sought to study the relationship between pain catastrophizing and opioid prescriptions as a third-year undergraduate student at Stanford, where the research was conducted. She says more research is needed to understand sex differences in pain so clinicians can develop better treatments for both men and women.

“If physicians are aware of these gender-specific differences, they can tailor their treatment,” she said. “When treating chronic pain patients — especially women — they should analyze pain in its psychological aspect as well as its physical aspect.”

Previous studies have found that women are more likely to have chronic pain, be prescribed prescription pain relievers, be given higher doses, and to use them for longer periods. Women may also become dependent on medication more quickly than men, according to the CDC.

Why Women Feel Chronic Pain More Than Men

By Pat Anson, Editor

A new study may help explain why women are more likely to have chronic pain and are more sensitive to painful sensations than men.

It’s because their brains work differently.

In experiments on laboratory animals, researchers at Georgia State University found that immune cells in female rats are more active in regions of the brain involved in pain processing. Their study, published in the Journal of Neuroscience, found that when microglia cells in the brain were blocked, the female rats responded better to opioid pain medication and matched the levels of pain relief normally seen in males.

Women suffer from a higher incidence of chronic pain conditions such as fibromyalgia and osteoarthritis. And studies have found that they often have to take more morphine than men to get the same level of analgesia.

“Indeed, both clinical and preclinical studies report that females require almost twice as much morphine as males to produce comparable pain relief,” says Hillary Doyle, a graduate student in the Neuroscience Institute of Georgia State. “Our research team examined a potential explanation for this phenomenon, the sex differences in brain microglia.”

In healthy people, microglia cells survey the brain, looking for signs of infection or pathogens like bacteria. Morphine is perceived as a pathogen and activates the cells, causing the release of inflammatory chemicals such as cytokines. Researchers say this causes "a neuroinflammatory response that directly opposes the analgesic effects of morphine."

To test their theory, researchers gave male and female rats naloxone, a drug that reverses the effects of an opioid overdose, and found that it inhibits the microglia activation triggered by morphine.

“The results of the study have important implications for the treatment of pain, and suggests that microglia may be an important drug target to improve opioid pain relief in women,” said Dr. Anne Murphy, PhD, co-author of the study and associate professor in the Neuroscience Institute at Georgia State.

Murphy says her team’s finding may also help explain why women are significantly more likely to experience chronic pain conditions than men.

A recent study at UCLA and UC Irvine found that microglial cells in both female and male rats can be activated by chronic pain.  The researchers found that brain inflammation in rodents caused by chronic nerve pain led to accelerated growth of microglia. The cells triggered chemical signals in the brain that restricted the release of dopamine, a neurotransmitter that helps control the brain's reward and pleasure centers.

Few Differences in Fibromyalgia Between Men & Women

By Lana Barhum

Fibromyalgia is remarkably more common in women than it is in men, but when it comes to feeling its effects, there is little difference between the sexes, according to results of a new study published in the journal Pain Research and Management.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, fatigue, depression and insomnia. As many as 90 percent of fibromyalgia cases are diagnosed in women.

The Al-Andalus Project consisted of 405 fibromyalgia patients and 247 non-fibromyalgia participants from southern Spain, the vast majority of them women. A significant limitation of the study is that only 73 men participated.

The researchers followed the groups for two years to see if gender-specific symptoms in the fibromyalgia patients existed. Participants were evaluated in several ways, including pain, lifestyle impact, fatigue, sleep issues, mental and emotional health, and cognitive performance.

In the fibromyalgia group, the men showed better working memory than women, whereas sleep latency (the length of time that it takes to go from full wakefulness to the lightest non-REM sleep state) was lower in the female participants. In the non-fibromyalgia group, the male participants showed higher pain thresholds in some areas, but not in others. 

The researchers found that some symptoms, including pain, in fibromyalgia men were worse than their non-fibromyalgia male peers. They believe the findings show that fibromyalgia might affect men more severely than women in tender point tenderness, mental health, and sleep latency, which contradicts earlier research on gender differences.

“Previous research has shown that fibromyalgia men present more severe limitations in physical functioning, social functioning, and health perception. However, we failed to find these differences between fibromyalgia women and men in the present study. Our results are consistent with other studies finding no gender differences in clinical key features in fibromyalgia," they wrote. 

It does still seem that the worst fibromyalgia symptoms, especially pain, affect females more severely than they do males, but the Al-Andalus researchers do not feel that is unique to fibromyalgia. 

"In the general population, women usually present greater pain sensitivity and lower pain threshold than men, which is in agreement with the results found in the nonfibromyalgia group of the present study," they wrote, noting that there is a difference in the way genders perceive and handle pain.

"It has been speculated that both peripheral and central nervous systems pathways might be involved in pain experiences; however, the mechanism underlying gender differences in pain remains misunderstood."

While the findings of the Al-Andalus Project do not support any significant gender differences in fibromyalgia and only offer some indication that fibromyalgia might affect men more severely with some symptoms, the researchers believe there’s a need to further understand why men and women perceive fibromyalgia pain and symptoms differently.

"Our results, then, suggest that fibromyalgia pain might be aggravated in men and, consequently, there might be gender-specific pain mechanisms in fibromyalgia," they said.

The Al-Andalus researchers believe further studies are needed that look at male and female fibromyalgia patients separately

“Given the low sample size of our sample, our findings should be interpreted as preliminary and future studies with a larger sample size of men might confirm or contrast the cut-off scores suggested in the present study," they wrote.

Lana Barhum lives and works in northeast Ohio. She is a freelance medical writer, patient advocate, legal assistant, and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

 To learn more about Lana, visit her website.