Endometriosis: Symptoms and Signs

Medically Reviewed by Traci C. Johnson, MD on July 11, 2024
Written by Keri Wiginton
12 min read

Many people feel lousy during their period. But if you have endometriosis, the pain may be so intense that it disrupts your daily routine. You might find it hard to go to work or school. Cramps and other symptoms could keep you from enjoying your favorite activities. 

Endometriosis is an ongoing inflammatory condition. It happens when the same type of cells that make up the lining of your uterus (the endometrium) grow outside the uterus and attach to other parts of your body. This can create scar tissue, which may cause your organs to stick together. 

There’s no cure, but recognizing the signs and symptoms of endometriosis is the first step in getting help. If you have any of the following symptoms, work with your doctor to come up with a treatment plan. 

Painful periods are the most common symptom of endometriosis, medically known as dysmenorrhea. Some people call this pain “killer cramps” because it can be severe enough to stop you in your tracks. For many, this monthly pain gets worse as you get older and menstruate more.

Other common endometriosis symptoms include: 

  • Non-period pelvic pain
  • Pain with sex
  • Chronic lower back pain that gets worse during your period
  • Ongoing belly pain
  • Diarrhea or constipation
  • Pain when you pee or poop
  • Long or heavy periods
  • Fatigue
  • Nausea
  • Bloating
  • Trouble getting pregnant 

People with endometriosis may also have: 

  • Migraine or other types of headaches
  • Allergies that get worse around your period
  • Irregular periods
  • Vaginal bleeding between periods (spotting)
  • Shorter menstrual cycles (less than 27 days)
  • Brain fog 
  • Trouble sleeping
  • Depression or anxiety 
  • Hypersensitivity to pain (central sensitization)

People with endometriosis are also more likely to have low body weight and body fat, compared to those without the condition. While experts aren’t entirely sure why this happens, there’s some evidence suggesting the condition may affect how your liver and fat tissue store or use energy. Research in this area is ongoing.

Endometriosis symptoms typically don’t vary by stage. Doctors use the staging system to describe how the disease looks in your body. You get a certain number of points, depending on the size, location, and depth of your lesions and if you have scar tissue called adhesions.

There isn’t a universal set of guidelines to rate endometriosis – there are more than 20 classification systems. Doctors commonly use the four stages (I, II, III, and IV) set up by the American Society for Reproductive Medicine.

Here’s an example of what those stages might include: 

Stage I endometriosis (minimal). A few small lesions around your pelvis that are right on the surface. Little to no scar tissue. No cysts, or endometriomas, on your ovaries.

Stage II endometriosis (mild). You have more lesions than stage 1. They’re bigger and go a little deeper into your tissue.

Stage III endometriosis (moderate). Many deep lesions. Small endometriomas on one or both ovaries. Some scar tissue.

Stage IV endometriosis (severe). Many deep implants. Big cysts on one or both ovaries. Multiple large lesions and lots of scar tissue. Possible damage to your organs. 

It’s important to note that the terms minimal, mild, moderate, and severe don’t refer to how endometriosis makes you feel. There’s no clear link between endometriosis stage and pain levels. In other words, you can have serious pain no matter your stage. 

General pain isn’t a reliable way to determine how far your disease has progressed. But certain symptoms, such as deep pain during sex and pain while pooping, often signal moderate to severe disease. 

Researchers are still trying to figure out why some people have severe pain despite having little endometriosis, while others with advanced disease may have no symptoms. Again, there’s no clear link between lesion location and where you have pain or how much it hurts.

While the cause is poorly understood, endometriosis pain may come from sources such as: 

  • Ongoing inflammation in your pelvic tissue
  • Inflammation in the fluid that surrounds your pelvic and belly organs
  • Pain-producing molecules in your pelvic fluid 
  • Body-wide inflammation
  • Internal bleeding from endometriosis lesions
  • Damage or irritation of pelvic nerves
  • Scarring that pulls, stretches, or distorts your anatomy
  • Heightened pain signals from the brain (central sensitization)
  • New nerves and blood vessels that grow and feed endometriosis (neuroangiogenesis) 
  • Pelvic floor muscles that tighten, spasm, or become tender (pelvic floor dysfunction)

Endometriosis commonly causes:

Pelvic or belly pain. Your cramps may start before your period and last several days. You may have pelvic or belly pain all the time. Over-the-counter medication may not help much.

Endometriosis pelvic or belly pain may feel like:

  • Your insides are being pulled down.
  • A gnawing or throbbing feeling that can be severe 
  • A sharp, shooting pain that hits you suddenly
  • You’re being burned with a hot poker or stabbed with knives.
  • A dull or pulsing ache that may linger for hours, days, or weeks

Backache. Inflammation affecting your pelvic organs can spread to nearby areas, including your lower back. Belly pain that makes you hunch over or tighten the muscles around your pelvis can cause cyclical or ongoing back pain. Rarely, endometriosis can happen on your spine, affecting the nerves in your back. 

Whether or not you have lesions on or near your spine, back pain from endometriosis may include: 

  • Lower backache that gets worse around your period
  • Pain that spreads from your back down your tailbone or legs
  • Pain that mimics another medical problem, like a herniated disk
  • Cyclical pain or numbness from your back down your butt, leg, or foot (sciatica) 

Painful sex. Many people with endometriosis feel pain while having penetrative sex (intercourse). Also called dyspareunia, this pain may go away when you stop having sex.

Endometriosis-related sex pain may be mild or severe and:

  • Hurt at your vaginal opening
  • Get worse with certain positions 
  • Ache or feel sharp or stabbing 
  • Have a pulling, burning, or stinging quality
  • Feel like you have something physically blocking sex 

You may have pain during sex if something presses directly on an endometriosis lesion or nearby scar tissue. General pelvic floor tension is another common cause. But if sex has hurt for a long time, you may have anxiety around intimacy. 

Fear of sex may lead to pain because of: 

  • Lack of arousal and lubrication
  • Vaginal muscles that tighten involuntarily (vaginismus)
  • Anxiety that makes it hard to communicate your needs to your partner

Urinary pain. This may happen because of sensitive nerves and inflammation. A less common reason is lesions in your urinary tract or on your bladder. People with endometriosis are also more likely to have interstitial cystitis (IC), an inflammatory condition that triggers ongoing bladder pain. 

Urinary problems caused by IC or endometriosis may contribute to pelvic pain and cause symptoms such as:

  • Burning or stinging when you pee 
  • Frequent urge to pee or trouble passing urine
  • Pain when your bladder is full or almost full
  • A hard time emptying your bladder
  • Feeling like you need to pee again when you just peed
  • Sudden urge to pee that you may not be able to control (overactive bladder syndrome)

Endometriosis pain in your legs. Anyone who menstruates may get more pelvic pressure around the time of their period. Endometriosis can also lead to inflammation, scarring, or pelvic floor tightness that affects nerves that connect your spine to your groin, hips, or legs.

You may get pain in:

  • One or both legs
  • Your upper thighs
  • Your butt 
  • The backs of your legs
  • Your knee and foot

You may feel pain along with numbness and tingling. Some people get a feeling of a “vice grip” around the hip and thigh. This kind of ache may stay for weeks or come and go with your period. You may limp, have trouble walking, drag your foot, or need to rest often. 

Many people with endometriosis have symptoms that overlap with irritable bowel syndrome (IBS). You can have both at the same time. But unlike IBS, endometriosis-related bowel symptoms tend to change during the month. They usually happen or worsen at certain times of your menstrual cycle, especially around ovulation or your period.

Endometriosis bowel symptoms commonly include:

  • Cramping or belly pain
  • Diarrhea and/or constipation
  • Bloating 
  • Pain with pooping
  • Frequent urge to pass stool even though you already pooped (tenesmus)
  • Nausea or lack of appetite

You may also have: 

  • Rectal pain or bleeding
  • Narrow poops or other stool changes
  • Black poop
  • Blocked bowels (rare)

You can have endometriosis bowel symptoms even without lesions on your bowels. This may be due to inflammation that irritates or scars the intestines. Hormonal changes that come with endometriosis can also affect the intestinal lining and how the gut muscles push food and waste through the body. 

Other causes of endometriosis bowel symptoms may include: 

Visceral hypersensitivity. You may have IBS-like bowel symptoms because the nerves in your gut are extra sensitive. When your pain signals are turned up, even healthy food or normal digestion can cause pain, bloating, or intestinal swelling. 

Endometriosis-related tissue. Anywhere from 3% to 37% of people with endometriosis may have lesions on their bowels. These implants mostly affect the rectum or sigmoid colon, which are the parts of the bowels closest to where poop exits the body

Trouble eating certain foods. Your gut may be sensitive to certain foods. For people with endometriosis, dietary triggers often include wheat/gluten, lactose, and other high-FODMAP foods. 

Pelvic floor dysfunction. The muscles and nerves in your gut work together to contract and move food and poop through your body. If you have endometriosis, this process may not always go smoothly. Your intestines may slow down and lead to constipation or spasm to cause diarrhea. You may have bouts of both. 

Changes to the shape of your bowels. Sometimes, endometriosis lesions or scar tissue can distort your intestines or other organs, making it more difficult to pass stool. This may cause bowel symptoms all month long or only around the time of your period. 

People with endometriosis have more mental health challenges and a lower quality of life than people without the condition, including higher rates of the following:

  • Anxiety 
  • Depression
  • Bipolar disorder
  • Substance use disorders
  • Attention deficit hyperactivity disorder (ADHD) 
  • Sexual dysfunction

Even if you don’t develop a mental health condition, endometriosis symptoms may negatively affect your quality of life in the following ways. You may:

  • Cancel social plans a lot 
  • Avoid joining sports teams or clubs
  • Stop doing things you enjoy
  • Have trouble sleeping 
  • Be unable to manage stress
  • Worry about the cost of medical care
  • Have trouble concentrating or remembering things
  • Have problems with sexual or romantic relationships
  • Fall behind at work or school

The link between endometriosis and poor mental health is complex and likely stems from a mix of the following:

Chronic pain. You’re much more likely to have depression and anxiety symptoms if you also have endometriosis-related pain, including chronic pelvic pain, painful periods, painful sex, and painful pooping. 

Brain changes. Researchers have found evidence that endometriosis seems to change the brain in a way that affects your mood, motivation, or how you think even if you don’t have chronic pain. There’s even a term for it: endometriosis brain. 

Genetics. The genes linked to endometriosis also increase the risk of anxiety, depression, and eating disorders. More research is needed to find out if these shared genes directly cause mood changes or if they just happen to follow the same biological pathways.

Endometriosis treatment. Repeat surgeries can be physically and emotionally stressful. Your odds of depression may go up due to side effects of medication used to suppress your natural menstrual cycle, including gonadotropin-releasing hormone (GnRH) agonists or birth control pills. 

Sleep problems. Endometriosis symptoms may make it hard to fall asleep. You may wake up more often or sleep for shorter periods of time. Poor sleep may increase your pelvic pain or worsen your mood. In turn, depression or anxiety may cause more sleep problems. 

Some experts prefer the term less-commonly recognized instead of uncommon, as extra-pelvic endometriosis isn’t as rare as researchers once thought. Your symptoms depend on which areas are affected, which may include: 

Diaphragm, lungs, or nasal passages. You may have the following symptoms, particularly on or around your period: 

  • Shoulder or chest pain
  • Shortness of breath
  • Nosebleeds
  • Coughing up blood 
  • Lung collapse

Bowel, bladder, kidney, or urinary tract. Endometriosis directly in these areas may cause less common symptoms, such as:

  • Blood in urine or stool 
  • Pain in the upper or middle back 
  • Kidney failure or kidney loss
  • Trouble holding your pee in (incontinence) 
  • Blockage in your urinary tract
  • Severe bloating in the belly
  • Bowel obstruction

Eyes. Endometriosis can sometimes grow in or around the eyes. It’s rare, but this can trigger bloody tears, usually during your period. 

Skin. This may cause pain or soft tissue swelling that comes and goes with your period. Skin endometriosis is more common in people who’ve had open abdominal surgery and may grow in scars left behind after procedures like a cesarean section (C-section).

Very rarely, endometriosis has been found in the brain. This may cause symptoms that mimic those of more common neurological or psychological conditions but usually come and go with your period.

Endometriosis in the brain may cause: 

  • Seizure 
  • Headaches 
  • Mood swings
  • Dizziness

Researchers are also exploring the link between pelvic endometriosis and symptoms like teeth clenching and jaw pain, such as temporomandibular joint pain (TMJ). 

Endometriosis also seems to make it easier for cholesterol to build up in blood vessels, which can raise the odds of having diseases in the heart and blood vessels. But more research is needed to understand the link between heart disease and endometriosis.

With any medical condition, a flare-up typically refers to a short-term worsening of symptoms. There’s no clear cause for endometriosis flare-ups. They may come on suddenly for seemingly no reason or happen because of:

  • What you’re eating 
  • Intense physical activity 
  • Stress, or illness (like when you get an infection). 

Everyone is different. But endometriosis flare-ups may include a ramp-up of symptoms such as:

  • Pelvic pain 
  • Severe period pain
  • Lower back pain
  • Body aches
  • Bladder pain or peeing more often
  • Fatigue or brain fog
  • Depression or anxiety

You may also have: 

  • Nausea or vomiting 
  • Migraine or other headaches
  • Bowel changes, including diarrhea or constipation
  • Painful abdominal swelling (endo belly)

What causes endo belly? Experts aren’t sure. Researchers have only recently started to study it. But triggers may include:

  • Hormonal changes 
  • Inflammation 
  • Food sensitivities 
  • Constipation 
  • Increased gut sensitivity, particularly during the week or two before your period starts. 

Up to half of people with endometriosis may have trouble getting pregnant. Infertility may be due to inflammation, scarring, or immune system and hormonal changes that:

  • Harm your ovaries
  • Damage sperm
  • Block fallopian tubes and keep an egg and sperm from meeting 
  • Stop a fertilized egg from implanting in the lining of your uterus

Many people with endometriosis have successful pregnancies. If you have infertility, your doctor may recommend surgery to remove lesions or scar tissue. Assisted reproductive technologies such as in vitro fertilization, intrauterine insemination, or medications that boost ovulation may also help you conceive.

Endometriosis is when cells similar to the kind that line your uterus grow elsewhere in your body. Commonly, it causes severe period pain, chronic pelvic pain, pain during sex, and infertility. You may also have bowel and bladder symptoms, fatigue, or mood changes. 

There’s no cure for endometriosis, but treatment can help you manage pain or other symptoms and boost your chances of getting pregnant. Ask your doctor if surgery, medication, or pelvic floor therapy might be right for you.

Here are some answers to frequently asked questions about endometriosis. 

Who should seek treatment for endometriosis?

Talk to your doctor if you have severe period pain that’s getting worse. Chronic pelvic pain and trouble getting pregnant are also strong signs of endometriosis. 

How do you know if you have endometriosis?

Your doctor may strongly suspect you have endometriosis based on your symptoms. But the only way to get a diagnosis is through a laparoscopy. This is a type of surgery where your doctor will look for and remove any lesions. Then, they’ll send that tissue to a lab, where someone will confirm endometriosis cells under a microscope. 

What happens if endometriosis is left untreated?

You could get new lesions, and the ones you already have may lead to more pain, inflammation, and damage to nearby areas. But endometriosis is hard to predict. And in some people, endometriosis-related tissue may go away, shrink, or stay the same. 

Can I live a long life with endometriosis?

Endometriosis may negatively affect your quality of life, but there’s no evidence that the disease itself will shorten your lifespan. But some researchers have found that it can slightly raise your odds of getting diseases in your heart and blood vessels, along with some kinds of cancer, including endometrial cancer. 

What does it feel like to live with endometriosis?

Some people have no symptoms, while others have pain they describe as the worst imaginable. You may fall somewhere in between. In general, endometriosis can cause unpredictable physical or emotional symptoms that can interfere with sleep, self-esteem, work, school, relationships, or other parts of your daily life.

How does stage IV endometriosis feel?

Endometriosis symptoms typically don’t vary by stage, so you can have the same symptoms whether you have stage I or stage IV. The most common symptoms for anyone with endometriosis include painful periods, pain with sex, and bowel and bladder problems. 

What is endometriosis pain equivalent to?

Your symptoms may be mild, but some people compare pain from endometriosis to labor contractions, appendicitis, kidney stones, or a urinary tract infection.