How Do Endometriosis Symptoms Feel?

Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus, causing pain, bloating, infertility, and other symptoms. A person with endometriosis could have debilitating symptoms that affect their everyday life or no symptoms at all.

Endometriosis symptoms often include:

• Pain, during menstrual periods but also all month long
• Abnormal, heavy, or irregular bleeding
• Abdominal, pelvic, leg, and back pain
• Pelvic heaviness
• Pain during sex (dyspareunia)
• Infertility
• Bloating (referred to as "endo belly")
• Fatigue
• Constipation or diarrhea
• Pain during bowel movements (dyschezia)
• Pain during urination (dysuria)
• Chest pain and shortness of breath

This article describes various endometriosis symptoms and treatment options.

Common Endometriosis Symptoms

Pain is the most common endometriosis symptom. However, not everyone with endometriosis experiences pain the same way.

Pain

Endometriosis-related pain can be felt in various locations, including the pelvis, abdomen, back, hips, legs, and more. There can also be different triggers for pain, such as sex, urination, bowel movements, menstrual periods, and more.

The frequency of endometriosis pain varies from person to person. Some people are constantly in pain, whereas others may only have pain occasionally.

The severity of endometriosis pain is also individual. Some experience debilitating pain, while others feel only mild discomfort.

Painful Sex, Irregular Bleeding, Infertility

One study interviewed 35 people with endometriosis and examined their responses to learn about the impact of endometriosis on people's lives. According to the results, the most common endometriosis symptoms besides pain were painful sex, irregular bleeding, and infertility.

Endo Belly

Another common endometriosis symptom is painful abdominal bloating and distention (stretching), often referred to by the term "endo belly."

Historically, this symptom was disregarded as being unrelated to endometriosis. However, research indicates it is one of the most common symptoms of endometriosis. As more people with endometriosis advocate for themselves and researchers learn more about the disease, the symptom profile becomes more accurate.

What Are the First Signs of Endometriosis?

The age at which endometriosis symptoms begin differs from person to person. Children and adolescents can have endometriosis. It has even been found in fetuses. However, the average delay to getting an endometriosis diagnosis is 10 years. This is due to many factors, including not promptly recognizing endometriosis symptoms.

Pain and painful periods tend to be the first acknowledged sign of endometriosis. However, other symptoms may occur before or alongside pain. In some cases, no symptoms are felt, and endometriosis is only diagnosed when a person finds they have infertility.

In an interview study of people with endometriosis, this is how they described their first signs of endometriosis:

• "I think I was about 14 years old when I had the symptoms. Yeah, lots and lots of pain, and I couldn't move. There was always constant pain."
• "From the time I was 13, I went through a number of different doctors to try and find the problem; most just told me that some people have heavier periods than others and more pain and don't cope well with the pain and that it was normal."
• "I remember getting the first lot of symptoms like someone had heated a knife and was ripping it up through my stomach. That's how it felt."

Uncommon Endometriosis Symptoms 

According to research, less common endometriosis symptoms include:

• Fatigue or tiredness
• Bloating
• Bowel symptoms
• Bladder symptoms
• Sleep disruption secondary to pain

Some people with endometriosis also experience chest symptoms. This rare symptom could signify thoracic endometriosis (endometriosis lesions in the chest cavity).

As a result, there is limited research on what chest symptoms of endometriosis feel like. However, one case report described symptoms as an unproductive cough, chest pain, and breathlessness during the menstrual cycle.

How Long Do Endometriosis Symptoms Last?

Endometriosis symptoms can last varying lengths of time. According to one study, endometriosis pain has three main patterns: cyclical, constant, and random. In other words, a person with endometriosis may have temporary pain that lasts minutes or chronic, continuous pain.

A person's pattern can also change over time. It usually becomes more severe over time, or it can be constant and flaring up during menstrual periods.

Symptom Intensity Does Not Always Match Disease Extent

The severity of endometriosis symptoms doesn't necessarily match the extent of the disease. Most healthcare providers use the American Society of Reproductive Medicine (ASRM) stages of endometriosis to classify endometriosis. This system is based on the impact of endometriosis on fertility and has no relation to other symptoms.

For example, someone could be in extreme and constant pain with many bowel symptoms but be diagnosed as stage 1. Another person with no pain, bloating, or other symptoms but who is struggling with fertility could be diagnosed as stage 4.

Getting Your Endometriosis Symptoms Validated

If you are experiencing endometriosis symptoms, talk to your healthcare provider. They should listen to your symptoms and concerns and begin a diagnosis process that includes ruling out other possible conditions.

Many people with endometriosis have stories of being told "pain is normal" or "tough it out." Unfortunately, that frame of mind is one of the reasons that most diagnoses of endometriosis are delayed 10 years on average.

If you feel that your healthcare provider is not taking your symptoms seriously, you can seek a second opinion.

What Makes Endo Symptoms Worse?

Certain factors can worsen endometriosis symptoms. Sometimes, the factors that trigger or worsen flare-ups are unavoidable.

Triggers

There are many possible triggers for endometriosis pain, bloating, fatigue, and other symptoms. Not everyone will react to every trigger. Journaling or keeping a record may help you identify your endometriosis symptom triggers. Some endometriosis triggers include:

• Stress
• Poor sleep quality
• Not drinking enough water
• Coffee
• Alcohol
• Inflammatory foods
• Penetration during sex
• Constipation
• Having a full bladder
• Exercise

Menstrual Cycle 

Many people with endometriosis report that their symptoms worsen during their period. According to research, endometriosis pain during the menstrual cycle may feel like:

• Aching
• Cramping
• Squeezing
• Pushing
• Stabbing
• Waves
• Ripping

Associated Gynecologic Conditions

Other gynecologic conditions (conditions involving the female reproductive organs) can occur alongside endometriosis and either worsen symptoms or cause similar and overlapping symptoms.

Some of these conditions include:

• Interstitial cystitis: Chronic bladder pain and discomfort
• Infertility: Difficulty with or inability to conceive
• Polycystic ovary syndrome (PCOS): A hormonal disorder
• Fibroids: Noncancerous growths that often occur in the uterus
• Pelvic inflammatory disorder: Inflammatory infection that spreads within the pelvis
• Adenomyosis: A condition in which the endometrium (the lining of the uterus) grows abnormally into the uterine wall

Treating Endometriosis Symptoms at Home

The symptoms of endometriosis can impact your daily life. While it's impossible to cure your endometriosis with home remedies, there are ways to make yourself feel better and manage your symptoms at home.

Some ways that people treat their endometriosis symptoms at home include:

• Heating pads
• Ice packs
• Warm baths
• Eating noninflammatory foods
• Drinking more water
• Drinking peppermint or chamomile tea
• Massage
• Acupuncture
• Over-the-counter (OTC) pain medication
• Yoga, stretching, or low-impact exercises
• Wearing loose and comfortable clothes

Medical Treatment for Endometriosis Pain

Everyone's pain and symptom management plan for endometriosis is different. Some may be prescribed medications for pain or gastrointestinal symptoms. You may be referred to other specialists like pelvic floor physical therapists, gastroenterologists, urologists, cardiologists, or pain management specialists.

The only way to confirm endometriosis is to have laparoscopic surgery (a surgical technique using small incisions and a camera to see internal structures). During surgery, the possible endometriosis lesions should be excised (cut out) and sent to a disease specialist, like a pathologist, to confirm the tissue is endometriosis.

While endometriosis surgery may be invasive and expensive, the good news is that surgery serves the purpose of diagnosis and treatment. Many people report relief from endometriosis symptoms long-term after excision surgery.

Summary

The most common endometriosis symptom is pain, but the severity and type of pain can vary individually. Other endometriosis symptoms include infertility, irregular bleeding, "endo belly," fatigue, painful urination, painful bowel movements, constipation, diarrhea, sleep disruption, and more. Certain factors can influence endometriosis pain and may be out of your control. Surgery is used to diagnose and treat endometriosis.