Endometriosis: What It Feels Like, Common Symptoms And Pain Explained

Endometriosis is a chronic condition that many women around the world experience and live with. In this article, we describe the common symptoms of endometriosis and how to tell when something is different from normal.

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What exactly is endometriosis?

The tissue that lines the inside of your womb is called endometrium. It grows larger and softer every month, preparing your womb for pregnancy. If you don’t get pregnant, the excess tissue will break down and be shed, creating your period.

In some women, this tissue that lines the womb can start growing in places where it’s not supposed to be, for example, around the ovaries, fallopian tubes, on the outside of the womb, or other places in the abdomen; this is called endometriosis. This misplaced tissue still grows and breaks down according to your cycle, but because it’s in the wrong place, this can cause problems.

As the excess tissue is not where it should be, it bleeds into the pelvic cavity during menstruation. This tissue and blood irritates other organs and results in inflammation that becomes chronic because it occurs with every menstrual cycle.

Does this happen to a lot of women?

A large study conducted in Washington State found that 1.9%¹ of women aged between 16–60 years old get a diagnosis of endometriosis. Other studies have found anywhere between 0.8% to 11%¹ of women have endometriosis, depending on how the study was performed or who it included. These numbers vary greatly, as it can be hard to determine the exact number of people with endometriosis due to difficulty in diagnosing the condition.

We know that endometriosis can affect any woman of reproductive age, but most women are diagnosed with endometriosis when they’re 25 to 29 years old², and it is uncommon for women to be diagnosed after the age of 44.

Common symptoms of endometriosis

So, why is it so hard to identify? It’s because people with endometriosis can have vastly different experiences of the condition. Many known and unknown factors influence the nature and severity of symptoms that occur. These include where the tissue is growing, how it responds to hormones, and how it interacts with the organs around it. This can all influence how it affects a woman and her body.

Some people can have endometriosis and have no symptoms at all, while others can have severe pain and infertility. Studies suggest that roughly 20–25%³ of people with endometriosis don’t actually experience any symptoms of the disease. Although we don’t know what causes these large differences in experience, we do know some symptoms which are frequently reported by people with endometriosis.

So, what does endometriosis feel like? Well, the two most noticeable symptoms of endometriosis are pain and infertility.

There are many different types of pain that are common in people with endometriosis. To a certain extent, it may also be normal to feel pain during your monthly cycle. Even among people with no abnormalities, there are often huge differences in the intensity and duration of the pain.

Endometriosis pain

While it can be difficult to differentiate between normal and abnormal pain, there are some types that are not ever normal and are a common feature in endometriosis.

Women with this condition can feel pain during sexual intercourse, urination, or bowel movements. The majority also feel pain during their period, which tends to have certain characteristics that set it apart from non-endometriosis period pain.

Pain during sexual intercourse

Experiencing deep pain while having sexual intercourse is a common symptom of endometriosis.

Here are some signs to look out for:

  • If this pain occurs often

  • If it happens when having penetrative vaginal sex

  • If it is worse during your period

Half of the women with endometriosis experience something called deep dyspareunia. This is pain during full or partial penetration and is felt around the vaginal or pelvic area; it’s often described as deep internal pain. While there are other possible reasons for women to experience this, the main cause⁴ of this type of pain is endometriosis.

Deep dyspareunia is thought to occur in endometriosis because the organs in your pelvis move around a bit during penetration. Usually, this wouldn’t be a problem, as there is space for this to happen and they are covered in a slippery film called peritoneum, so they can slide over each other without much friction.

However, in endometriosis, there is endometrial tissue growing where it shouldn’t be. The movement may cause tension across areas of peritoneum affected by inflammation and scarring related to the deposits, leading to pain and further inflammation.

It is important to note that there may be other reasons for pain during sex. If the pain occurs during the initial entry to the vagina then it is called superficial dyspareunia.

There are a number of things that can cause this type of pain. For example, it may due to an infection, other inflammatory diseases, a lack of the hormone estrogen in menopause, breastfeeding, or drugs. Another frequent reason for superficial pain during penetration is the spasm of muscles in your pelvic floor, which is common in conditions like endometriosis which causes pain in the pelvis.

If you’re concerned, then it’s important to see your doctor so that they can figure out the true cause of any pain you may be experiencing.

Pain during urination

Some people with endometriosis can also experience pain during urination.

Here are some signs to look out for:

  • If there’s a burning, tingling, or stinging sensation when urinating

  • If you’re finding it hard to urinate when you need to

  • If you need to go to the toilet a lot more often than usual

  • If you notice that the strength of the stream of your urine has decreased a lot

  • If you feel like you haven’t fully emptied your bladder just after you’ve gone

These symptoms can be caused by endometriosis, as the excess tissue can grow on the outside of the bladder or affect it and other parts of the urinary system. However, it’s important to note that these symptoms are very common in other conditions that affect the urinary system more frequently, like bladder infections.

Pain during defecation

People with endometriosis can also experience pain during defecation.

Here are some signs to look out for:

  • A sharp sensation, like being cut, during bowel motions

  • Symptoms like constipation, diarrhea, or both, causing your bowel movements to be irregular

  • Pelvic pain after you have used your bowels, or pain when you get the urge to open your bowels

These symptoms can occur in endometriosis because the excess tissue can grow between your womb and rectum, and apply pressure to both. In more advanced cases, the endometrial tissue may even grow into the wall of your bowel. However, these symptoms can also be caused by many other conditions such as irritable bowel syndrome, inflammatory bowel disease, inadequate diet, and/or hemorrhoids. One thing which may indicate that these symptoms are associated with endometriosis is if they get worse during your period, as there is more likely to be inflammation related to the deposits during that time.

Pain during menstruation

Lastly, the majority of women with endometriosis experience pain during their period. It is perhaps the hardest kind of pain to determine whether it is normal or abnormal. Severe lower abdominal pain, heaviness, and cramping shortly before and during your period can be a common symptoms of endometriosis. 50–90%⁵ of people with endometriosis experience this kind of pain. So how do you tell the difference between what is normal and abnormal? Well, here are some key differences⁶.

Normal menstrual pain will usually:

  • Start within three years after your first period

  • Be more painful when young (15-25 years of age)

  • Gradually improve as you age

  • Improve after giving birth

  • Only be present while on your period

  • Last from four to forty-eight hours

Abnormal menstrual pain will usually:

  • Start five or more years after your first period

  • Get worse as you age

  • Not improve after giving birth

  • Occur during your period, but also at times outside of your period - commonly in the days leading up to bleeding, and sometimes after your period has ended

  • Last one to five days

Endometriosis flare-ups

When people talk about endometriosis, you often hear them mention a flare-up. So what is an endometriosis flare-up? Oxford Languages defines the word flare-up as “a sudden outburst of something, especially violence or hostility.” In the context of endometriosis, you can have a sudden intensification of your symptoms, most commonly pain, for a short amount of time: it may not even occur around the time of your period.

Many women describe this pain as violent and like physical damage because of its strength and severity, and common descriptions are stabbing or twisting pain. This pain can be so intense that many people find it incredibly debilitating.

In one study⁷, a woman describes being “on all fours in the bathroom, just in a ball because it hurts, because you can’t do anything… you feel quite closed down, and closed in… it’s almost like tunnel vision”. However, you must remember that not everyone’s experience is the same, and some women with endometriosis experience no pain at all.

About pain

Pain can be a very broad topic and is a highly individual experience, especially in a condition with such wide variations like endometriosis. Some people with endometriosis have no pain, some have pain that comes and goes, and others have pain that never really stops.

The question is, how long does endometriosis pain last in the long run? Unfortunately, endometriosis is a chronic disease, and there is currently no known cure for it. Treatments are mainly focused on reducing symptoms.

Experiencing pain for a long time can influence many things in a person’s life, ranging from impacts on their emotions, lifestyle, and mental health to even altering how their body perceives pain. Because of this, people with endometriosis may also develop things like fatigue, depression, and anxiety. These can also be indicators of abnormal pain.

Endometriosis and fertility

Sometimes, endometriosis can affect your ovaries, fallopian tubes, womb, or pelvic cavity in a way that leads to problems with fertility. About 21–40%⁸ of women undergoing infertility treatments have endometriosis. Therefore, women who are infertile are six to eight⁹ times more likely to have endometriosis than women who are fertile.

So, if you are having problems trying to get pregnant, it may be worth asking your doctor whether or not endometriosis is contributing to your fertility problems. This is particularly important if you identify with some of the symptoms or experiences discussed in this article.

However, other things can cause infertility, and not everyone struggling with infertility has endometriosis, so it’s important to exercise caution before reaching a conclusion.

How can you tell you have endometriosis?

If you experience some or all of the symptoms discussed here, it’s worth speaking to your doctor. Unfortunately, endometriosis can be a challenging diagnosis to make, and even doctors can have trouble telling if it is endometriosis based on symptoms alone.

The only way to know if someone has endometriosis is through surgery and sending a tissue sample to the laboratory for confirmation. However, this isn’t very practical for most people and is quite invasive.

Doctors can sometimes get a clearer idea using less invasive imaging techniques such as MRI and ultrasound to try and identify endometriosis, but those scans do not always show any evidence of the condition – even when it’s present. Due to the difficulty in diagnosing endometriosis, it’s also important to rule out similar conditions that may be easier to identify to get the right treatment.

These can include a few other conditions that can be mistaken for endometriosis as mentioned earlier, such as infection and irritable bowel syndrome. Other conditions which may have similar presentations to endometriosis are:

  • Adenomyosis

  • Interstitial cystitis

  • Pelvic inflammatory disease

  • Ovarian cyst (benign)

  • Ovarian cancer

  • Pelvic floor tension myalgia

  • Neuropathic pain

  • Uterine myoma (fibroid)

When should you go see a doctor?

As is often the case, there are many potential conditions that can cause symptoms related to periods. Also, because menstrual pain in women can be a normal experience, it’s hard to tell when you should be concerned enough to see a doctor. Here are some tips for recognizing when you might need to seek medical attention.

When to see a doctor:

  • If your menstrual pain is getting worse as you get older

  • If you’ve had to miss work or school because of pain

  • If your menstrual pain occurs when you’re not having your period and isn’t following your usual cycle

  • If you have pain during sexual intercourse and/or are avoiding intercourse because of the pain

  • If you are under 35 and have been trying to get pregnant for a year or more. Or if you’re older than 35 and you have been trying to get pregnant for six¹⁰ months.

The lowdown

Endometriosis is a very complex, chronic condition that affects many women worldwide. Although it varies greatly from person to person, there are some common symptoms of the condition, though they can present as other illnesses. 

If you’re experiencing severe pain that is interfering with your daily life or you’ve had trouble getting pregnant, you may want to see a doctor to explore your symptoms.

Have you considered clinical trials for Endometriosis?

We make it easy for you to participate in a clinical trial for Endometriosis, and get access to the latest treatments not yet widely available - and be a part of finding a cure.

Joining community groups and exercise programs for my condition made me feel empowered – but I want to be part of finding a cure.
Peter, 64

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