Is Endometriosis a Disability? What You Need to Know About Endo and Disability Benefits

Endometriosis has stolen your life from you. 

• The lost days of work and the reduced paycheck
• You have no more sick days to use
• The inability to do day-to-day chores around the house

These things can build to a point where working no longer seems possible. 

Those with endometriosis know how difficult it can be to live with. But what does the Social Security Administration say about it?

This guide will walk you through the basics of what qualifies as a disability and what that means if you suffer from endometriosis.

Table of Contents

• How Can Endometriosis Affect Your Day-to-Day Life?
• Can Endometriosis Stop You From Working?
• What Defines a Condition as a Disability?
• Is Endometriosis a Recognized Disability?
• When Regular Treatment Isn’t Enough, Does Endometriosis Count as a Disability?
• Can You Get Disability Benefits Due to Endometriosis?

How Can Endometriosis Affect Your Day-to-Day Life?

Each woman experiences endometriosis differently. Someone with mild endometriosis may be experiencing horrible pain, yet others with more severe endometriosis may have little pain.    

This is about more than experiencing daily pain. This can affect your livelihood. 

Daily chores or exercising can become a mountain to climb rather than a molehill. Your work productivity can suffer and your mental health may take a hit. 

This may mean guilt, or unfortunately, others shaming your pain tolerance or questioning your daily reality.  

But the most consistent part? It hurts, and your quality of life suffers from it.

Can Endometriosis Stop You From Working?

A study done by the National Library of Medicine found that out of the 1,418 women in the study, each woman lost on average 10.8 hours of work weekly. It might not stop you from working, but it might prevent you from being productive.  

This same study found that women with endometriosis have a 38% greater loss of work productivity than those without endometriosis. This difference is mostly caused by those with more intense daily symptoms.

That’s nearly 40% of your productivity lost to endometriosis. 

If endometriosis makes work so difficult, is there any help from the government for this condition? 

Keep reading to learn if endometriosis is considered a disability by the Social Security Administration.

What Defines a Condition as a Disability?

We all may feel disabled sometimes, especially after an acute injury or a really difficult workout with a new personal trainer. Thankfully, that pain is temporary.

Depending on the person, endometriosis can severely impact your ability to live a normal life — and unfortunately, this is not temporary.

But what does the government have to say about it?

According to the Social Security Administration (SSA), three main conditions must be met for you to receive SSA benefits:

1. You cannot do work that you did before. The SSA says you must have a condition that prevents you from engaging in Substantial Gainful Activity (SGA). As of 2020, this means you cannot earn more than $1,260 per month as a non-blind person to qualify for disability benefits.
2. The SSA decides that you cannot adjust to other work because of your medical condition. 
3. Your disability has lasted or is expected to last for at least one year or result in your death. 

If you can continue your work duties with accommodations, this is not considered a disability. 

Unfortunately, the SSA does not pay benefits for partial or temporary disabilities.

Is Endometriosis a Recognized Disability?

The SSA lists definitions of disabilities based on the part of the body for adults and children:

• Cardiovascular system
• Endocrine disorders
• Mental disorders
• Immune disorders
• Etc. 

This is colloquially called the “Social Security Blue Book”. 

So, is endometriosis a disability in the U.S.? By itself, endometriosis is not on the list.

What about more severe cases of endometriosis?

When Regular Treatment Isn’t Enough, Does Endometriosis Count as a Disability?

Endometriosis is not often considered a disability. Symptoms are often intermittent and can be treated with medication and other low-key treatments. 

However, if there is hard medical evidence that your endometriosis keeps you from being able to...

• Hold a job
• Carry out daily tasks
• Or the complications may be life-threatening

...you may qualify as having a disability. 

Keep reading to learn what it would take for endometriosis to be considered a disability, and what you need to prepare for it.

What Symptoms of Endometriosis are Considered Severe?

There are four stages of endometriosis:

1. Minimal 
2. Mild
3. Moderate
4. Severe

A laparoscopy is first used to determine the severity of the endometriosis and you're given a score of 1 to over 40 points. Stage 4, severe endometriosis, results in a score over 40.

Severe endometriosis typically results in more severe scarring and cysts.

Infertility is also common. 

Some common signs of severe endometriosis include:

• Severe cramping
• Pain during or after sex
• Chronic pelvic pain
• Pain during ovulation
• Extreme bleeding

What the stage does not mean, is how badly it affects each person. Nor does the stage tell you how it should be treated.

How is Severe Endometriosis Treated?

If the stage doesn’t determine how exactly endometriosis should be treated, what does this mean for you?

At this point, severe endometriosis means that there are:

• Deep endometriosis implants throughout your body 
• Large cysts on at least one of your ovaries
• Many dense adhesions are found (where organs become attached to one another and form scar tissue) 

Basically, the complexity and severity have leveled up. This involves more complex treatment. 

There are three main categories of treating severe endometriosis:

• Conventional treatments. Medications, hormonal therapy, and surgery are common. The goal of treating later stages of Endometriosis is often to shrink the lesions. Hysterectomy is a common treatment option at this stage. 
• Natural treatments. Some natural treatments include herbal treatments, eating a healthy diet, and supplements like vitamin D, A, and C.
• Lifestyle. It’s recommended that you regularly exercise and find ways to relax. Support and encouragement groups are excellent ways to find a supportive community and access to information and resources.

The use of alternative, natural, and clean products can help reduce the toxins in your body and may help regulate the hormones in your body.

Can You Get Disability Benefits Due to Endometriosis?

If the SSA Blue Book does not define endometriosis as a medical disability, is endometriosis considered a disability at all?

It may be hard to qualify, but it's not impossible.

One of the best things you can have prepared is evidence.

Collect copies of all relevant medical records. This may include:

• Documentation of your diagnosis
• A record of treatments
• Laboratory results
• Surgical history
• A written statement from your physician explaining how your condition affects your day-to-day abilities
• If possible, have a former employer provide documentation explaining Your decline in work performance. 
• Financial records 

The SSA provides a checklist for the Online Adult Disability Application. Be sure to look over this to make sure you are as prepared as possible. 

This application can be done online or in-person at a Social Security office

The more prepared you are, the more likely you can qualify as being disabled. If you don’t qualify, it's difficult news to hear. 

It can feel crushing to know that your pain is not deemed enough by the SSA.  

There is hope. There are many common, natural, and alternative treatments for endometriosis that can help make life bearable. And maybe help you thrive again.