What Does Endometriosis Feel Like?
Pelvic pain is a common symptom of endometriosis. Research shows that over 60% of people with endometriosis experience chronic pelvic pain, and people with endometriosis are 13 times more likely to report abdominal pain than those without endometriosis.
How people experience pain with endometriosis can vary. In a 2020 Endometriosis in America survey, 94% of respondents experienced painful periods, 91% experienced abdominal pain or cramping, and 82% experienced back or flank pain.
When the pain occurs can also differ from person to person. Some people experience no pain or rarely feel pelvic pain. Others can feel pelvic pain right before their periods, during ovulation, or ongoing.
Endometriosis pain may feel:
Deep in your pelvis
Constant or cyclical with periods
Like stinging, stabbing, burning, cramping, or other pain manifestations
This article will discuss what pain associated with endometriosis feels like, the factors influencing pain, pain-relieving measures, and when to talk to your healthcare provider.
Describing Endometriosis Pain
Not everyone with endometriosis experiences pain, but for those who do, symptoms can vary by person. Two people with endometriosis may describe their pain very differently.
The best person to determine the intensity and severity of endometriosis pain is the person experiencing it. The pain levels can't be measured objectively.
People with endometriosis have described their pain with words like:
Cramping during menstruation and/or ovulation tends to be much more intense for people with endometriosis than typical period cramps. Normal cramping during menstruation is light, and discomfort can usually be managed with over-the-counter pain medication.
Cramping due to endometriosis is typically much more intense and can involve:
Heavy, prolonged menstrual bleeding
Blood clots in menstrual blood
Cramps that begin by feeling manageable like normal menstrual cramps but then suddenly and quickly climb to pain levels that are incapacitating
Types of endometriosis lesions (areas of endometriosis tissue) include:
Superficial endometriosis: Typically found on the pelvic peritoneum (the membrane that lines the abdomen and pelvic cavity and surrounds the organs)
Cystic ovarian endometriosis (endometrioma): Menstrual blood-filled cysts (sometimes called chocolate cysts) found in the ovaries
Deep endometriosis: Nodules found in the recto-vaginal septum, bladder, and bowel
Outside the pelvis: Rare, but can happen
Endometriosis lesions can also adhere to organs, such as:
Fibrous tissue can cause organs to stick together (called adhesions).
Pain can be experienced in the organs affected but can also often be felt in areas that are close in proximity to the lesions that are affected by inflammation. For example, pain may be felt in the reproductive organs, and/or it could originate in organs such as the bowel and bladder.
People with endometriosis often also have chronic abdominal pain disorders such as painful bladder syndrome and irritable bowel syndrome (IBS).
Some people with endometriosis experience cyclical pain related to the menstrual cycle. Pain can also be omnipresent and not come on in a pattern or be associated with the menstrual cycle.
Endometriosis is staged according to the severity of the lesions/adhesions, but symptoms don't always correlate to the severity of the condition. Some people with stage 4 (most severe) endometriosis have few to no symptoms. Conversely, small areas of endometriosis tissue can cause a great deal of pain.
Differences In Endometriosis Pain: Influencing Factors
A number of factors can influence how pain due to endometriosis is experienced. These may include:
Location and depth of lesions: Where lesions are and how deeply they have grown into organs or surrounding tissue can affect how pain is felt and other symptoms. Lesions on or around the bladder may cause pain with urination. Lesions that affect the bowel may cause painful bloating or gastrointestinal (GI) problems.
Presence of adhesions: Endometriosis tissue can thicken during the menstrual cycle but isn't shed like normal menstrual blood and tissue. This can lead to inflammation, scarring, cysts, and adhesions (when fibrous tissue causes organs to stick together), all of which can cause pain.
Back, leg, and hip pain: Abdominal pain can sometimes radiate to other areas of the body, including the back, legs, groin, or hips.
Triggers: Pain can be triggered by certain activities (such as during and after sexual intercourse), bodily functions like urinating and bowel movements, or even eating certain foods for some people.
Endometriosis can cause a constellation of symptoms that vary from person to person. You do not need to be experiencing all the telltale signs of endometriosis to have endometriosis.
Symptoms such as pelvic pain and abnormal menstrual cycles are common for people with endometriosis, but some people with endometriosis, even severe endometriosis, can have only a few symptoms or no symptoms at all.
It is also possible that an abnormal period could be occurring without it appearing abnormal. For some people, especially those with endometriosis, menstrual blood can flow backward through the fallopian tubes and into the pelvis, going unnoticed.
Endometriosis can also manifest as mostly GI symptoms instead of symptoms associated with menstruation.
The only way to know for sure if you have endometriosis is for a surgeon to perform an outpatient surgery called a laparoscopy to look for endometriosis lesions.
What to Tell a Healthcare Provider About How Endometriosis Feels
It can help to keep a diary of your symptoms and what was happening before or while they occurred. You may notice patterns that can help you identify triggers or determine that symptoms seem to align with your menstrual cycle.
Writing down all of your symptoms can also help you make sure you give your healthcare provider the full picture without forgetting details.
Be descriptive when talking to your healthcare provider, and don't downplay your pain. It's common for people with endometriosis to think their pain is just part of menstruating and not realize something is wrong. Tell your healthcare provider about your pain in detail, including:
How it feels (stabbing, cramping, etc.)
Where it is felt (specific location, all over, more than one spot?)
The intensity of the pain
How the pain changes (does it come in cycles, start mild and become severe, any other patterns?)
Any other symptoms you may be experiencing, such as heavy periods or constipation
Anything else you feel can help your healthcare provider understand your symptoms
Delayed diagnosis is common. According to a study by the World Endometriosis Research Foundation, the average elapsed time between the first symptoms and the time of diagnosis was seven years among people ages 18 to 45. Some studies put the delay at up to 12 years in the United States.
Getting a prompt, accurate diagnosis and effective treatment can be even worse for some demographic groups, including people of color and Indigenous people.
Part of the reason for this delay is that the pain and other symptoms people with endometriosis experience can be downplayed both by the person experiencing them, who may think it's just part of menstruation, and by healthcare professionals who may be dismissive.
Sometimes endometriosis is mistaken for or missed alongside other conditions such as IBS.
Diagnosis can also be delayed due to the invasive nature of how endometriosis is diagnosed and a lack of understanding about endometriosis within healthcare as a whole.
How Endometriosis Feels During a Flare-Up
Pain during a flare-up is subjective and feels different from one person to the next—and even within the same person's experiences.
People with endometriosis have described the pain in ways such as:
Comes in waves
Takes my breath away
Subtle, almost buzzing sensation
Makes me struggle to talk
Pain Relief for Endometriosis Pain You Can Feel All Over
Treating endometriosis can help with symptom relief, including pain.
Medications that may help include:
Nonsteroidal anti-inflammatory drugs (NSAIDs): NSAIDs such as Advil/Motrin (ibuprofen) or Aleve (naproxen) can help relieve pain.
Prescription medication for pain relief: If over-the-counter pain relievers are not effective, your healthcare provider may recommend prescription medication for pain relief.
Combination oral contraceptives: Hormone control using estrogen and progesterone may be recommended.
Progestins: This form of the hormone progesterone can stop menstrual periods and slow or stop endometrial/endometriosis tissue growth.
Gonadotropin releasing hormone (GnRH) analogues: These lower estrogen levels by inducing menopause (temporarily).
Testosterone: A synthetic version can suppress estrogen and progesterone production.
Several surgical options are available for treating endometriosis, including:
Laparoscopy: Involves a thin tube containing a light and a camera inserted into the abdomen to help eliminate endometriosis tissue using excision (removing endometriosis tissue), or ablation (destroying endometriosis tissue with intense heat)
Laparotomy: Similar to laparoscopy, but uses a bigger incision
Hysterectomy and/or oophorectomy: Hysterectomy removes the uterus, oophorectomy removes the ovaries. The procedures can be performed on their own or together
Things you can do at home to help manage endometriosis pain include:
Apply heat, such a hot water bottle, heating pad, or warm bath
Regular, gentle exercising
Pelvic floor physical therapy (see a physical therapist about exercises you can do at home)
Stress management exercises
Yoga, meditation, and relaxation exercises
Getting enough good quality sleep
How Does Endometriosis Pain Affect Quality of Life?
Endometriosis can significantly impact quality of life. Endometriosis pain can lead to feelings of exhaustion, making it difficult to manage both regular activities and the stress of endometriosis.
Intense pain can be debilitating enough that the person with endometriosis can't engage in their usual routine. Sometimes the person can't get out of bed. This can impact areas such as:
Work or school
Endometriosis can also have psychological consequences. People with endometriosis have reported feeling anxiety, stress, helplessness, and uncertainty. Some note feelings of loss and shame.
Endometriosis can require a lot of time and a financial commitment in terms of medical appointments, treatments, medications, time off work, and more. This can add to the physical and psychological stress.
What Can Be Mistaken for Endometriosis?
Symptoms of endometriosis can overlap with symptoms of other conditions. People with endometriosis can also have comorbid (co-occurring) conditions.
Other conditions that should be considered when endometriosis symptoms are present include:
Overactive bladder syndrome (OAB)
Interstitial cystitis/painful bladder syndrome (IC/PBS)
Pelvic floor dysfunction
Inflammatory bowel disease
Endometriosis symptoms can be experienced at any age after the start of menstruation. It is seen in more than 11% of women aged 15 to 44. It is commonly diagnosed at ages 30 to 40, but symptoms may have been present years earlier.
Pelvic pain is a common symptom of endometriosis. For those that experience it, the pain can be severe and debilitating.
Endometriosis pain is experienced differently from person to person. Some have pain that is associated with their menstrual cycle, while others have pain that does not follow a pattern. The pain can cause different sensations, such as sharp, cramping, or aching.
The intensity of the symptoms does not always correlate with the severity of the condition.
Endometriosis can be treated with medications or surgery. Pain symptoms may be relieved with home remedies such as applying heat, performing gentle exercise, or using relaxation techniques.