Endometriosis is a full-body disease in which tissue similar to the lining of the uterus grows outside the uterus. Pain is the most defining symptom of this disease.
In this article, learn more about where endometriosis pain occurs and how to manage endometriosis pain.
Where Is Endometriosis Pain?
Endometriosis pain can occur in many places in the body. It is commonly associated with chronic (long-term) pelvic pain. People with endometriosis are 13 times more likely to have abdominal pain than those without endometriosis.
A 2021 qualitative study aimed to understand the experience of endometriosis pain by interviewing 20 people with the disease. According to the research, endometriosis pain occurs in the following locations:
PelvisBowelsBladderLungsKidneysNervesUpper bodyLower limbsHead
In most cases, endometriosis lesion location does not relate to pain location. You may experience pain in the lesion location, tissues around lesions, distant sites from the lesions, or as widespread and generalized pain.
What Does Endometriosis Pain Feel Like?
Endometriosis pain is described as follows:
Aching, cramping, or stabbingBeing stuck by needlesBreathlessnessHeavinessNumbness or a dull sensationPushing or squeezingRadiatingRipping or draggingSharp or burningWaves
Pelvis
Over 60% of people with endometriosis have chronic pelvic pain. The sensation may occur in the lower abdomen any time of the month, although some people report worsening pain during menstruation.
Bowels
Bowel pain is common with endometriosis and may be constant or unpredictable, occurring in sharp waves when the bowels are full, in the hours or minutes before a bowel movement, or during bowel movements (also called dyschezia). This pain may occur all month long or worsen during menstruation.
Bladder
Around 70% to 80% of people with endometriosis also have painful bladder syndrome called interstitial cystitis. Endometriosis bladder pain is often felt as dysuria (pain during urination). Compared to other locations of endometriosis pain, bladder pain is described as “burning” and feeling similar to a urinary tract infection (UTI).
While most endometriosis lesion locations do not correspond to the area of pain, bladder pain is an exception. Research has found that painful urination is associated with endometriosis lesions on the surface of the bladder.
Back, Hips, and Legs
Some people feel endometriosis pain in the back, hips, and legs. In one study, people with back pain reported it as constant but worsening during menstruation. Lower body pain associated with endometriosis is frequently described as “radiating” down the lower limbs or feeling like sciatica.
Upper Body
Some people with endometriosis report chest, lung, breast, and neck pain. Upper body pain can lead to breathlessness. Chest pain, in particular, may indicate thoracic endometriosis (endometriosis lesions growth on or around the lungs).
Head
Headaches and migraines, including light and noise sensitivity, are common pain sources that worsen before or during menstruation.
A 2022 study found that people with endometriosis had migraines more frequently than people without endometriosis. People with migraines were also 4.6 times more likely to have severe stage endometriosis, and they were also more likely to have co-occurring adenomyosis.
During or After Sex
About half of the people with endometriosis experience painful sex (dyspareunia), often described as sharp, stabbing, radiating, and dragging. You may experience pain during orgasm or any intercourse or penetration, with pain lasting for days.
Research has found that the severity of pain from sex is related to the endometriosis stage, mainly contributing to the narrowing of the area between the uterus and rectum, known as Pouch of Douglas stenosis.
Surgery
Laparoscopic excision surgery is the gold standard for endometriosis diagnosis and treatment, generally reducing pain and symptoms. However, the surgery can be painful in the short term. Adhesions (scar tissue) from surgery can also cause pain.
Endometriosis Pain Can Be Cyclical or Constant
Endometriosis does not only cause pain during a person’s period. An interview study of people with endometriosis found that endometriosis pain can occur in the following ways:
Cyclically: Pain occurring in a pattern, usually worsening before and during menstruation. Constantly: Some level of pain daily, all month long. Randomly: Pain that occurs in random, unpredictable flares. Changing: A pain pattern that changes over time, usually progressing from cyclical to constant.
Endometriosis Pain Triggers
Some people find that their endometriosis pain is triggered or worsened by unavoidable factors such as menstruation, urination, and defecation. However, you may have more control over some external pain triggers, which can help reduce the frequency or severity of your pain.
Some commonly reported endometriosis pain triggers include:
Certain foods (gluten, dairy, sugar, and inflammatory foods)Certain drinks (coffee, alcohol)StressLack of sleepDehydrationPenetration during sex
Tips for Dealing With Endometriosis Flare-Ups
For people with endometriosis, it is inevitable to experience flare-ups (when pain and other symptoms worsen for a period of time). This can be physically, mentally, and emotionally challenging.
Some tactics that may help you cope with an endometriosis flare-up include:
Over-the-counter (OTC) or prescription pain medication Hot water bottle or heating pad Cold packs Mint tea Comfortable, waist-band free clothes Hot bath Changing position Gentle pelvic stretches
Treatment and Management Options
Your healthcare provider will consider your age, the severity of the disease, your symptoms, and your desire to have children when determining the best treatment option for you. They may recommend medication, surgery, or a combination of the two options.
Healthcare providers use excision surgery to remove all visible endometriosis lesions from the body, restore anatomy, and significantly improve symptoms. However, excision surgery is not accessible to everyone due to high costs and a limited number of specialists. Other management options are available.
Additional options can improve some people’s quality of life in the short term. Some examples of other management options include OTC or prescription pain pills, and hormonal treatments can improve some people’s quality of life. Hormone medications can reduce current endometrial lesion progression and prevent new endometrial tissue growth.
Summary
Endometriosis is a painful condition in which tissue similar to that which lines the uterus grows elsewhere in the body. It is frequently associated with chronic pelvic pain but can also cause pain across the whole body, including the abdomen, bowels, bladder, upper body, head, back, hips, and legs. Endometriosis pain occurs in various patterns, including cyclical (often worsening during menstruation), constant, and random.
