Endometriosis is a chronic condition that can have a significant impact on everyday life and activities. But it isn’t viewed as a disability by most medical professionals or the law.
That’s likely because long-term conditions such as endometriosis can have differing effects, with some people experiencing more severe symptoms and others able to manage their symptoms without specialist care and treatment.
Although endometriosis isn’t formally recognized as a disability, many people who live with it and know just how disabling it can be do use the term.
It’s also possible that disability benefits may be available if you find the condition severely limits your ability to live a typical life, particularly when it comes to working.
As endometriosis causes tissue similar to the lining of the uterus to grow elsewhere in the body, it can come with a whole range of symptoms.
These can include:
- pelvic pain
- pain during or after penetrative sex
- heavy periods
- intense period pain
- pain when using the bathroom
Some people may not have noticeable symptoms, or they may be able to manage them to the point where they’re able to participate in everyday activities.
But others have debilitating symptoms that affect their ability to do routine things on a daily basis.
Pain can be one of the most difficult things to deal with — so much so that endometriosis has been linked to a
Because endometriosis tissue grows in response to hormonal stimulation, medications that lower hormone levels can be used to limit endometriotic tissue growth.
Medications that can help with endometriosis symptoms include hormonal birth control like oral contraceptive pills and gonadotropin-releasing hormone (GnRH) agonists, which work by causing a temporary menopausal state.
Surgery to remove tissue can be useful for more severe symptoms or if hormonal medication isn’t helping.
Sometimes, hormonal medication may be readministered after surgery. Again, it’s possible for tissue to regrow after it has been surgically removed.
A final option is a total hysterectomy. This isn’t usually considered until several other treatments have been tried.
For those with endometriosis who are actively trying to get pregnant, most of these treatments, like birth control pills or a hysterectomy, are not viable options.
Endometriosis can affect your fertility in several different ways, which can make it more difficult for you to become pregnant. Talk with a doctor or fertility specialist about your symptoms. They may be able to recommend more advanced fertility treatments to aid in pregnancy.
“Endometriosis is not only medically difficult to diagnose for many,” says Kryss Shane, LSW, LMSW, “but it typically results in a long process of being told by loved ones that period pain or abdominal pain is ‘a woman’s curse’ or ‘all in your head’ or the like.”
Over time, this — along with feeling dismissed by medical professionals —“can demoralize the person, causing them to begin to question themselves,” continues Shane. “For those who don’t identify as women, this can also increase gender dysphoria.”
The chronic pain and other symptoms that can come with endometriosis can have a major impact on everyday life, too.
It can limit a person’s ability to leave the house and participate in social or work activities, potentially making certain life goals more difficult to achieve.
The lack of energy can also make basic household tasks harder. Feelings of guilt or frustration can then emerge.
Plus, endometriosis tends to occur or flare up at times when a person’s life is considerably changing, such as adolescence — again making those social, relationship, and career transitions harder.
Of course, people who have milder or no symptoms at all are much less likely to experience such an impact on daily life.
People tend to form important social networks during adolescence. Experiencing endometriosis symptoms during this time can have a negative impact on the ability to create such relationships and have an early social life.
This can continue to affect people as they get older. In
People reported staying home and missing out on social activities or giving up enjoyable hobbies like sports.
They also mentioned distancing themselves from others due to feelings of jealousy or experiencing conflict with others due to symptoms like pain and mood changes, which naturally led to feeling isolated.
The fact that other people can’t see endometriosis can make it all the more difficult when it comes to relationships with friends and family.
Intimate relationships can feel the effects, too.
Pain during or after penetrative sex
Potential effects on fertility are also a concern. Some people worry about being able to find a partner who will accept possible infertility, while others already in relationships have
Chronic pain can lead to time off from school or college.
Not feeling able to gain a higher level of education can affect career opportunities, too.
It should be noted, however, that participants were classified as having severe symptoms, so not everyone with endometriosis will experience the same.
General working life may also be disrupted. Some have to take days off work or longer absences and may be
All of this may lead to a complete change in career, with some people
Endometriosis can leave you feeling isolated. But there are lots of people to talk with who are in the same position, as well as experts who can help.
The following sites and organizations offer resources to find out more about the condition, support for dealing with symptoms, and a chance to connect with others who understand how you feel:
You can also find lots of endometriosis support groups on social media.
For more information and advice on applying for disability benefits, head to the Social Security Administration (SSA) site.
Endometriosis can come with a whole range of symptoms, and they can be mild, moderate, or severe.
While some people may find the condition disabling and be less able to have a social or working life, others may have milder symptoms that can be more easily managed.
Early diagnosis and effective treatment are vital for reducing the negative impact of endometriosis on everyday life.
So use the above resources to try to build a support network and find a specialist team who listens to you, understands, and takes action.
Lauren Sharkey is a U.K.-based journalist and author specializing in women’s issues. When she isn’t trying to discover a way to banish migraines, she can be found uncovering the answers to your lurking health questions. She has also written a book profiling young female activists across the globe and is currently building a community of such resisters. Catch her on Twitter.