Endometriosis can be a debilitating disease that can affect a person’s ability to work. While up to 10 percent of women in the United States have endometriosis, many people don’t understand the disorder and its symptoms. Painful symptoms and a lack of general awareness about the condition can make working while living with endometriosis complicated.
People with endometriosis may need to request special accommodations or take extra sick days. They may also experience the fear of losing their job due to endometriosis symptoms and procedures like diagnostic testing and surgeries.
MyEndometriosisTeam members often discuss how endometriosis has impacted their work lives and careers. One member wrote, “The pain and cramping slows me down at work. I also get really bad hot flashes. It’s so hard for me to do anything.”
Another member commented, “While most days are manageable, there have been countless times when I have had to miss half or full days of work.”
Endometriosis may affect a person’s ability to go to work, the type of job they can have, and their career growth. It also can strain their relationships with co-workers and managers and jeopardize their job security.
If you have endometriosis and are working or looking for a new job, there are many ways to advocate for yourself and find your optimal work situation. This article will discuss how you can better manage work or find a new job while living with endometriosis.
With endometriosis, tissue that’s similar to the tissue that lines the uterus (the endometrium) grows outside of the uterus on organs like the ovaries. Symptoms of endometriosis include:
Symptoms can vary throughout the menstrual cycle. They can also vary depending on the extent of endometrial tissue growth outside of the uterus.
Currently, there is no cure for endometriosis. Treatment options like nonsteroidal anti-inflammatory drugs (NSAIDs), hormonal contraceptives, or surgeries to remove implants and cysts do not always offer enough relief from endometriosis pain and other symptoms.
“After years of dealing with the pain and nausea and changing jobs to a less physical desk job, getting going is still the hardest part of every day. The morning pain, fatigue, and nausea is almost paralyzing,” wrote one MyEndometriosisTeam member.
Fatigue, treatment side effects, and severe, chronic pain can all affect a person’s ability to work when living with endometriosis. One study examined more than 1,000 women with endometriosis from 10 different countries. It found that women lost on average 10.8 hours of work each week due to endometriosis symptoms.
Another study explored accounts of 107 women with endometriosis in Puerto Rico. It found that women with endometriosis reported missing work because of pain at higher rates than people with other chronic pain conditions like back pain and arthritis. Women in the study missed about 34 days per year because they were “unable to perform physical activities.” They missed another 19 days for endometriosis treatments and surgeries.
Endometriosis is not well understood by the general public, so asking for appropriate workplace accommodations may be difficult. Managers may have difficulty sympathizing with someone with endometriosis, and missing work for endometriosis symptoms might also create tension with co-workers.
Aside from missing work, endometriosis symptoms may impair a person’s quality of work. For example, the study on women with endometriosis in Puerto Rico found that 84 percent of women reported a decrease in their quality of work due to endometriosis symptoms.
Lower quality of work may affect a person’s chances for raises, promotions, job security, and career growth. One MyEndometriosisTeam member wrote, “I will be crippled with pain but go to work anyways.”
Endometriosis symptoms can affect a person’s physical capabilities and limit their options for work. “I had to quit my job in a lab — that I loved — because I couldn’t be on my feet anymore,” wrote one member. Another member commented, “I had to quit my job as a therapist at an inpatient psych hospital a few months ago, and endometriosis played a huge role in that.”
A study in Switzerland, Germany, and Austria found that women with endometriosis were less able to work in their desired profession as compared to women without endometriosis. Women with endometriosis also considered their health issues more when making career decisions than women without endometriosis.
If endometriosis is affecting your work but you are not in a position to leave your job, there are some ways that you can work with your supervisor or employer to manage your situation.
Talking to your manager about your endometriosis could be helpful, if you feel comfortable. Your manager is likely not very knowledgeable about endometriosis and its painful symptoms. You don’t need to tell anyone at your job about your endometriosis if you don’t feel comfortable doing so. There are times when it may be helpful, for example, to explain taking sick days, but you are not required to disclose any health information to your manager or co-workers.
“I’ve always told my employers about my endometriosis up front. Nothing worse than having a flare-up two weeks into a new job and dying to keep up and make a good impression. You just make it worse by pushing too hard,” said one member.
Although it is a sensitive topic, explaining endometriosis, your symptoms, and how they affect your work life will help your manager to better sympathize with your situation. It may also help them to advocate on your behalf with your company’s human resources department and get you the workplace accommodations you need.
Accomodations in the workplace help employees with a disability or medical condition like endometriosis do their jobs easier. You may request accommodations for endometriosis by asking your manager or someone in the human resources department.
Some examples include:
Be sure to look into your options under the Family and Medical Leave Act (FMLA). The FMLA is a U.S. program that offers some employees unpaid, job-protected leave from work to attend to family or medical needs. Check the U.S. Department of Labor’s eligibility requirements for FMLA.
“I have had to go on FMLA before. I currently have an intermittent FMLA so when I have flare-ups I can take the time I need to recover,” wrote one member.
FMLA can also be used to take time off work for surgeries and recovery. “I took FMLA (12 weeks) for two back-to-back laparoscopic surgeries,” wrote another member.
If you are looking for a new job, there are several considerations to keep in mind to help you find a workplace that will be more accommodating to you and your needs.
Remote work — or at least having the option to work from home — could be a good choice if you have endometriosis. Remote work could give you a more flexible work schedule. It could also let you try home remedies to manage endometriosis pain while working.
Because of the COVID-19 pandemic, more companies and positions have transitioned to remote work. There are currently more remote work positions available than before the pandemic.
“I have my own business as a freelance writer, but some days it’s so hard to push myself through to meet deadlines. Since I have no benefits of full-time work like paid time off or sick days, it can be rough; however, I have more flexibility when I need it,” wrote one member.
When researching open positions, dig deeper into companies and their policies on health care, employee wellness, FMLA, and accommodations for health issues and disabilities.
Try using platforms like LinkedIn or Glassdoor to read reviews about companies from people who work there. Gathering this type of information before applying for or accepting a job will help to ensure that you choose a work environment that will be supportive of you and your life with endometriosis.
If you have severe endometriosis and are not able to work because of it, check your eligibility for disability benefits. The Social Security Administration has different criteria for determining eligibility for disability benefits. Severe endometriosis may qualify you for them.
Read more about applying for disability benefits for endometriosis.
If you need to take sick days, have an unsupportive manager or co-workers, or feel that your career options are limited because of endometriosis, know that you are not alone.
On MyEndometriosisTeam, the social network for people with endometriosis and their loved ones, more than 125,000 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.
How do you balance work and endometriosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.