Endometriosis is a condition where tissue similar to the lining of the uterus is found in other places in the body. This abnormal tissue growth is most often found in the pelvic area but has also been found in the bladder, bowels, diaphragm, lungs, kidneys and even the brain. This can cause severe pain, inflammation, organ dysfunction, and even infertility. Endometriosis affects 200 million people worldwide, occurring in 7-15% of women — although some experts think the actual number could be closer to 25%. 

Despite its commonness and the intense, debilitating pain it can cause, endometriosis is not officially recognized as a disability by law or by medical professionals.

woman in a dark bedroom suffering from endometriosis

First, what is a disability?

The term “disability” refers to a mental or physical condition that hinders a person’s movements, senses, or activities. In other words, it affects a person’s quality of life. 

Here in the United States, the Americans with Disabilities Act (ADA) prohibits discrimination based on disability. Endometriosis, however, doesn’t have its own specific classification under the ADA.

Many women, who have severe endometriosis know firsthand just how debilitating it can be — interfering with work, social activities, and relationships — and may themselves refer to it as a disability, as it hinders them from being able to live their normal, full lives. 

Women might qualify for protection on a case-to-case basis if their endometriosis substantially limits their quality of life, such as preventing them from being able to work or take care of themselves. 

What are some common symptoms of endometriosis?

Perhaps one of the main reasons endometriosis is not classified as a disability is because the symptoms vary so widely from person to person. This can also make it incredibly difficult to diagnose with an average of 10 years delay. Symptoms can be sporadic, constant, or sometimes even cyclical. They might vary or remain regular. The pain and severity can change as well. 

Here are the most common signs and symptoms of endometriosis:

  • Pelvic pain during menstruation, before menstruation, after menstruation, and/or anytime during the month

  • Constipation

  • Bloating

  • Painful intercourse usually with deep insertion or certain positions

  • Infertility

  • Right and/or left-sided pelvic and abdominal pain

  • Diarrhea

  • Painful bowel movements

  • Urinary frequency, and/or urgency, and/or painful voiding

  • Fatigue

  • Malaise

  • Lower back pain

  • Heavy or irregular periods

Where you experience pain can help indicate areas where endometriosis has invaded. For example, if the tissue has grown in the pelvic area, there might be pain during sex or GI issues. Tissue growth on an ovary might be one-sided, and so on. 

Some women might not experience any pain at all but suffer from unexplained infertility due to endometriosis. For women who receive an “‘unexplained infertility” diagnosis, endometriosis is the cause in approximately 40-50% of those cases.

woman in pain on a sofa

Advocating for yourself at work with endo

Because endometriosis is not officially recognized as a disability, the workplace environment can become frustrating and daunting when you are suffering from painful, fatiguing symptoms. 

While the ADA mandates that employers must provide reasonable accommodations for employees with disabilities, this will require you to take matters into your own hands and openly communicate with your employer about specific needs you might require. 

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Some workplace accommodations may include:

  • flexible work schedules

  • modified tasks

  • quiet spaces

  • ergonomic workstations

  • an environment for managing symptoms

  • hybrid in-office and WFH scheduling

You can always seek help from your healthcare professional on how to effectively talk about your endometriosis and needs with your employer. 

woman connecting with others in an endometriosis chat room

Ask for help

Although endometriosis is not legally recognized as a disability, you can still receive protection if your case is severe enough to limit your quality of life. You might also find solace, help, and a real sense of community by connecting with patient advocacy groups, such as the Endometriosis Foundation of America, or online support groups. Just remember: you are not alone in this. There is hope and there is help. Don’t suffer in silence!

For more information on diagnosing and treating endometriosis, listen to this podcast episode.

Brighid Flynn is a freelance writer based in Philadelphia where she lives with her husband and puppy. She is just beginning her journey toward motherhood.