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.

Advocating for Your Disabled Child at Public Schools

By Barby Ingle, PNN Columnist

With school starting in the coming weeks, I have been thinking about the special assistance I recieved as a child and how hard my mom and family had to fight for the help I needed. As a child, I was diagnosed with a severe learning disability and had to take special education classes through middle school and have special provisions and testing in high school and college.

According to the U.S. Department of Education, about 5.5 million children with disabilities receive special education and related services, and are protected through the Individuals with Disabilities Act (IDEA). Some kids with special needs do not qualify under IDEA, but are served under Section 504 of the Rehabilitation Act of 1973.

If you are a parent with a disabled child, you may need to inform school administrators that IDEA and the Americans With Disabilities Act (ADA) establish a legal premise that ensures that children with invisible disabilities are afforded the same rights and access to services as children with other disabilities.

Being a part of this system has given me some insight as to how it works. For instance, my parents had to fight for my right to special education teachers and sessions. It should have been much easier for me to get that assistance, but in the 1970’s schools often didn’t want to help.

Federal law prohibits discrimination based upon disability. I eventually got the care I needed, but had to switch from private school to a public school, and my parents had to file and win a lawsuit for the special needs program to start at my elementary school. Their activism not only helped me, but all of the disabled kids that also needed assistance.

What Section 504 Requires

Section 504 is now commonly used across the country for children with learning disabilities, but I still hear of cases where a child has a chronic illness and their parents have to fight for access to a special needs program.

Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled. It’s purpose is to give children the tools they need to prepare them to be adults who can participate in society through employment and independent living.

A child with a pain disease, disorder, syndrome or condition is protected under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Special assistance should be individualized to your child’s specific needs. This includes deciding how many days they go to special sessions, if they are in the main classroom full-time or part-time, if they get to take their tests in private rooms or have someone read to them the questions, and being allowed to respond verbally if writing is difficult for them.

Many children with chronic pain match the legal definition of a disability, which qualifies them to be protected by federal laws in school and in society as a whole. Even though the pain can’t be seen by others and is subjective, these kids are protected under the law.

How to Help Your Child

A child with chronic pain or an invisible disabling illness will experience physical, social and emotional challenges. You can help educate administrators, teachers and classroom aides about your child’s condition by giving them a list of symptoms and special needs. Be sure to include invisible symptoms and how the child learns best. For instance, they may need a quiet area where the lights are lowered during testing to help them concentrate. Or a child may need to wear sunglasses if they experience migraines.

A parent can also list their child’s strengths, aspirations, likes and dislikes. You should be prepared with medical documentation to educate staff about your child’s conditions and be prepared to appeal decisions made by the school if they are not providing what it takes to assist your child.

Know which kind of special accommodations are needed and should be available. Does your child need adjusted class schedules or grading, behavior management support, extended time on tests and assignments, modified textbooks or audio-video materials, reduced homework or classwork, verbal or visual testing, or technology aids?

Some children may also need help making the transition between homeschooling, special classes and regular classes. It is your responsibility as a parent to stay on top of this and keeping all involved in the loop. Remember, you are the voice of your child and can speak up at any time throughout the year.

Unlike when I was a child who started in private school and had to switch to public schools to get the assistance I needed, today students with disabilities who attend charter schools have the same Section 504 rights as those who attend public schools.

My final tip is to keep a positive attitude when facing challenges and use your right to appeal school decisions when appropriate. Keep track of your child’s progress and advocate for additional services or changes when needed. These needs may change over time. I needed more assistance and help up until 9th grade, and as I learned and grew my plan changed.

From kindergarten through college, keep an eye out for when changes are needed or when services need to upgrade or downgrade, and whether something your child needs is being neglected. For more information and assistance, contact the National Education Association.

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.  

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.