Stage 4 endometriosis describes the most severe form of the condition. It means that endometrial tissue may be growing in multiple places in a person’s body. However, a person may not always experience symptoms.

The stage of endometriosis may not always correlate to the symptoms a person experiences.

It is possible for a person with a more advanced stage of endometriosis to experience little to no symptoms, while people with stage 1 endometriosis can experience severe symptoms.

This article explains what stage 4 endometriosis is as well as the symptoms a person with stage 4 endometriosis may experience. It also explores the available treatments and gives an idea of what to expect.

A person with pelvic pain, which is a symptom of stage 2 endometriosis.Share on Pinterest
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In 1996, the American Society for Reproductive Medicine (ASRM) revised its staging system for endometriosis, which documents the extent and spread of the disease in a person’s body.

The four stages range from minimal to severe. Healthcare professionals still use them today.

The stages of endometriosis are:

  • Stage 1: minimal
  • Stage 2: mild
  • Stage 3: moderate
  • Stage 4: severe

However, some experts question the usefulness of this system in diagnosing people with endometriosis.

This is because some people experience severe symptoms that need medical interventions at stage 1, while others can be virtually symptom-free at stage 4.

For example, a 2017 guideline from the National Institute for Health and Care Excellence (NICE) states that the staging system does not give doctors guidance about treatment plans or expected outcomes. This is because people with endometriosis experience the condition differently.

The staging system may be useful for people who want to get pregnant, though.

According to a 2020 paper, people with stage 4 endometriosis may experience fertility challenges.

People with endometriosis may experience similar symptoms regardless of stage. According to the National Institutes of Health (NIH), pain is the most common symptom. Other symptoms include:

The Office on Women’s Health adds that many people with endometriosis experience digestive problems, particularly when menstruating, including:

All these symptoms can affect a person’s quality of life and have mental health implications.

Learn more about endometriosis and depression.

The Office on Women’s Health explains that endometriosis usually starts in the pelvic cavity. The most common sites are the:

  • fallopian tubes
  • ovaries
  • external surface of the uterus
  • ligaments that hold the uterus in place
  • peritoneum, the membrane that surrounds the abdominal cavity

Other areas it can affect include the:

  • bladder
  • bowel
  • cervix
  • rectum
  • vagina
  • vulva

In extremely rare cases, it can affect a person’s skin, brain, and lungs.

Doctors refer to the patches of endometriosis cells as implants, nodules, or lesions.

Over time, these can cause a buildup of scar tissue and adhesions. Adhesions are bands of scar tissue that bind the organs together. Growths and cysts can develop, blocking the fallopian tubes or ovaries.

The ASRM staging system requires doctors to record the number, location, depth, and size of any endometriosis implants to determine the stage.

People with stage 4 endometriosis may have numerous deep and superficial implants, large cysts on one or both ovaries, and multiple adhesions “sticking” organs together.

The staging system does not account for the severity of a person’s symptoms. At any stage, people can experience extreme pain that impacts their daily life.

The ASRM classifies endometriosis into the following categories:

1minimal• few implants
• no significant adhesions
2mild• numerous superficial implants, especially on ovaries or peritoneum
• no significant adhesions
3moderate• multiple superficial and deep implants
• adhesions to fallopian tubes and ovaries
4severe• numerous superficial and deep implants
• significant adhesions
• large cysts, or endometriomas, on ovaries
• multiple adhesions

The NICE says there is evidence that endometriosis is a progressive disease for some people.

However, the organization adds that it is unclear whether this is always the case. Experts do not yet know whether the disease can remain stable or even improve over time.

Endometriosis implants can create blockages within the fallopian tubes and can form cysts in a person’s ovaries.

In a 2020 paper, researchers explain that the risk of fertility difficulty rises at the higher stages of endometriosis.

People with endometriosis often experience debilitating pain, which may be chronic, or ongoing. Pain may increase in intensity around the time of the person’s period.

Long term, many people with chronic pain experience depression and a reduced quality of life. If a person finds intercourse painful, this may affect their sex life and relationships, too.

Diagnosing endometriosis can be tricky. NICE estimates that some people may wait 10 years between first reporting their symptoms and receiving a diagnosis.

Many people with endometriosis do not experience symptoms, while others feel healthcare professionals do not recognize the symptoms.

The Office on Women’s Health explains that most doctors will perform a pelvic exam to feel for any cysts or scar tissue behind the uterus. They may also recommend an internal ultrasound to produce images of the person’s reproductive organs.

A laparoscopy is the only way to confirm a person has endometriosis. This involves surgery where a doctor inserts a tiny video camera into the person’s abdomen to look for evidence of scarring, cysts, and implants.

A doctor will diagnose stage 4 endometriosis if there are multiple implants, adhesions, or large ovarian cysts.

Doctors can perform surgery, called laparoscopy, to remove endometriosis implants and scar tissue.

However, depending on where the implants are, this can lead to fertility issues. People with severe pain who are recommended surgery must discuss the implications with their doctors before agreeing to it.

Surgery for stage 4 endometriosis may be more difficult. Endometriosis may be present at multiple sites and there may be thick scar tissue.

Other surgical options include severing the pelvic nerves to reduce the amount of pain the person is in. There is some dispute about how effective this surgery is, and many doctors do not currently recommend it.

There is no current cure for endometriosis, but treatments can help people manage symptoms. Doctors tailor their treatment plans to the person. Treatments tend to be the same regardless of the stage of the condition.

Professionals will take the person’s age into account, as well as whether they want to have children and how much pain they are in.

Since endometriosis symptoms fluctuate with a person’s menstrual cycle, doctors may recommend birth control pills to people who are not wanting to get pregnant. Birth control pills can reduce hormone levels and help prevent endometriosis from growing.

Doctors may also recommend gonadotropin-releasing hormone (GnRH), which works by suppressing ovulation and reducing estrogen levels

GnRH causes a temporary menopause, interrupting the implants’ growth and reducing symptoms. When the treatment stops, the person may have a better chance of getting pregnant.

Doctors may also recommend over-the-counter pain relievers, or prescribe medications for stronger pain relief.

People with stage 4 endometriosis may need ongoing treatment to help them manage their symptoms. Everyone experiences endometriosis slightly differently, and the stages will not influence a doctor’s chosen treatment plan.

The NIH explains that not all treatments work for all people all the time, so doctors may change their recommendations depending on the person’s priorities and pain.

Many people find that their symptoms return once they stop taking the medications. Even after surgery to remove implants, people may develop new endometriosis patches that produce severe symptoms.

If a person experiences ongoing pelvic pain or heavy and extremely painful periods that interfere with their daily life, they should contact a doctor.

People are at higher risk of developing endometriosis if they have a close relative with it. The risk increases if a person has heavy menstrual cycles that last for more than 7 days.

This section answers some frequently asked questions about stage 4 endometriosis and its symptoms.

Is stage 4 endometriosis curable?

No, endometriosis is not curable at any stage. However, doctors can prescribe treatments to help the person manage their symptoms.

Treatments include hormonal medication and pain relievers. Hormonal treatments may stop the endometriosis from progressing into more severe stages.

How common is stage 4 endometriosis?

In a 2021 review, researchers explain that most people with endometriosis receive a diagnosis at stage 1.

Researchers did a systematic review and meta-analysis of multiple studies on endometriosis from January 1990 to December 2018.

They found that roughly 2% of people with the condition have stage 4 endometriosis.

Is it possible to have stage 4 endometriosis without symptoms?

Yes. Not everyone with endometriosis experiences symptoms. The staging does not reflect how much pain a person is feeling.

However, the more endometriosis develops and spreads, the higher the risk of developing cysts or blocked tubes.

Stage 4 endometriosis describes how endometriosis implants grow in many places in a person’s body, and how it may affect their organs. Experts associate it with an increased risk of fertility difficulty.

Endometriosis is a chronic disease. Most people experience pain in the pelvic area, but others do not have any symptoms.

Doctors use the severity of a person’s symptoms rather than the staging system as a guide for choosing treatments.