Symptoms of Endometriosis

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Symptoms of Endometriosis

Main article: Endometriosis Overview

Key Points:

  • The most common symptoms of endometriosis are pelvic pain, painful periods (dysmenorrhea) and pain during and/or after sexual intercourse (dyspareunia).
  • Endometriosis symptoms can vary significantly from person to person.
  • There is no definitive cure for endometriosis, but symptoms can be managed with medical interventions such as hormonal treatment, pain killers and surgery.

Symptoms of Endometriosis

Endometriosis is a condition in which tissue similar to the uterine lining grows and forms lesions outside of the uterus.

Research suggests that endometriosis affects approximately 10% of women of reproductive age globally, with the most common symptoms being pelvic pain, painful menstrual periods and painful sexual intercourse. However, only a minority of women (2-25%) report experiencing all three of the most common endometriosis specific pain symptoms.

Symptoms of endometriosis can include:

However, not all women with endometriosis are symptomatic, as up to 43% of women with endometriosis have no symptoms, with endometriosis lesions only being found whilst undergoing abdominal surgeries for other conditions. Interestingly, research suggests that the absence of pain is more likely in women with severe endometriosis (Stage 4).

Pelvic Pain

Endometriosis can cause chronic pelvic pain, often worsened during the menstrual period due to hormonal changes.

For most women with endometriosis, pelvic pain begins a couple of days before the menstrual period and lasts until the end of the period. However, some women experience chronic and constant pelvic pain, which can be debilitating.

As well as variation in the duration of pain, severity can range from mild to severe, with some women unable to perform daily activities.

Pelvic pain is most commonly reported in the lower part of the abdomen or back, and may also be more noticeable during and/or after intercourse or when urinating and/or defecating.

Interestingly, the severity of pain is not correlated to the severity of endometriosis lesions, making a diagnosis more difficult. Additionally, pelvic pain is commonly coupled with pain in other areas such as the abdomen and back.

Abdominal Pain

In addition to pelvic pain, endometriosis can cause pain in the abdomen – informally referred to as ‘endo belly’. This pain is often caused by endometrial lesions on or around abdominal organs.

Symptoms often include bloating, discomfort and general pain in the abdomen. Pain can be acute (subsiding in a few hours), but can also be chronic (persisting for weeks) for some women.

The severity of endometriosis-associated abdomen pain varies between women, but can range from very mild to severe and debilitating.

Back Pain

The presence of endometrial lesions in the lower back or pelvic cavity can cause back pain, often worsened during the menstrual period. Pain can be acute or chronic, and can radiate to the pelvis and legs.

Endometriosis-associated lower back pain can be caused by a number of factors. For example, compressed nerves from endometrial lesion growth, inflammation of endometrial lesions or the increase of prostaglandins (hormone-like substances with a role in inflammation, pain and uterine contractions).

Mild back pain can often be managed by over the counter medications. However, severe back pain should be discussed with a medical professional as other medical interventions can be offered.

Period Pain

Discomfort during the menstrual period is common, but should be tolerable so that daily activities can continue. However, endometriosis can cause severe pain that is beyond normal menstrual cramping during the menstrual period.

Endometrial lesions respond to hormonal changes during the menstrual period, which can cause inflammation and result in severe period pain, above what is considered normal.

Although most women experience period pain during menstruation, endometriosis-associated period pain can begin 7-10 days before the period starts. Typically, period pain from endometriosis has similar characteristics to regular menstrual discomfort (sharp and cramping pains), but is more severe.

Over the counter pain killers may help to relieve severe period pain. However, professional medical advice should also be taken, especially if the pain is preventing daily activities from being undertaken.

Ovulation Pain

Endometrial lesions respond to changing hormone levels throughout the menstrual cycle, so some women with endometriosis can experience pain during ovulation caused by lesions surrounding or in the ovaries (endometriomas).

Pain from ovulation in women with endometriosis is commonly in the groin, back, hip or buttocks and can last up to 48 hours.

Ovulation pain due to endometriosis is most commonly experienced together with pelvic pain, however, depending on the location of endometriosis adhesions, this can be an isolated symptom.

Intercourse Pain

A common symptom of endometriosis is pain during or after intercourse (dyspareunia), usually caused by adhesions between the vagina and rectum, which can be irritated by penetration.

Many women describe the pain during intercourse as sudden stabbing, deep in the abdomen and can range from mild to severe. These factors are all dependent upon the person and type of intercourse.

Pain is often worsened during the menstrual period, and may be less severe outside of the menstrual period (follicular and or luteal phase).

Pain during sexual intercourse may also be exacerbated by hormonal medications which can lead to vaginal dryness. It is suggested to use extra lubrication to reduce pain from penetrative intercourse.

Identifying where and when the pain occurs during intercourse can be very helpful when discussing symptoms with a medical professional, as it may aid in identifying the location of potential endometriosis adhesions.

Lastly, pain during intercourse is often one of the first signs of endometriosis, so speaking to a medical professional about it may aid early diagnosis.

Hip Pain

Endometrial lesions can form around the nerves between the hips causing inflammation and hip pain, which commonly feels like a sharp stabbing pain and can spread to other areas of the body. It may also present as a tingling sensation or numbness, depending on which nerves are affected by the lesions.

Hip pain is likely to be worsened during the menstrual period due to changing oestrogen levels, causing inflammation of endometrial lesions. However, pain can also be chronic, lasting over six months, depending on the severity and location of the endometriosis lesions.

Over the counter pain killers can help to alleviate hip pain, as can gentle exercise such as swimming, walking or stretching.

Buttocks Pain

Endometriosis can cause pain in the buttocks, usually when there are endometrial lesions around the sciatic nerve.

Similar to hip pain, the inflammation around the sciatic nerve can cause pain, numbness and a tingling sensation which can radiate to other areas. Pain is often worsened during the menstrual period, but can also be chronic.

Endometriosis-related pain in the buttocks can have significant effects on daily life, and can make standing, walking or sitting painful.

It has been suggested that heat therapy and over the counter medications can help to relieve this pain, but serious medical interventions may be required.

Leg Pain

Endometriosis can cause leg pain which is commonly a stabbing or throbbing pain. This occurs when endometrial lesions form around and irritate the nerves in the pelvis.

Though leg pain alone is frustrating, it can also lead to other issues such as difficulty walking, loss of muscle mass, restless leg syndrome and difficulty sleeping. These are all issues that should be discussed with a healthcare professional.

Leg pain associated with endometriosis often starts in the lower back and/or pelvis, and radiates down the back of the legs. However, this varies between individuals.

Similar to other types of pain associated with endometriosis, leg pain often begins a few days before the menstrual period and is relieved after the cycle due to hormonal changes causing inflammation of lesion.

Stomach Cramps

Endometriosis can cause severe stomach cramps, not only during the menstrual period but also as a long-term (chronic) pain.

Stomach cramps from endometriosis are often reported as sharp and stabbing pains, and are caused by inflammation of endometrial lesions within the abdomen.

Sometimes these symptoms can be hard to diagnose as endometriosis as they can present similarly to other conditions, such as irritable bowel syndrome. However, stomach cramps that are interfering with completing day-to-day activities should be discussed with a medical professional.

Gastrointestinal Issues

Though most people associate endometriosis with painful periods and pain during intercourse, it can also cause gastrointestinal issues such as bloating, diarrhoea and constipation in over 90% of women diagnosed with endometriosis.

Endometriosis-related gastrointestinal issues are most commonly caused by endometrial lesions penetrating the bowel. However, endometrial adhesions nearby the bowel can also cause gastrointestinal issues, even if not directly present on the bowel.

Some gastrointestinal issues caused by endometriosis have similar symptoms to other conditions such as irritable bowel syndrome, making a diagnosis of endometriosis more difficult.

Endometriosis is also associated with Small Intestinal Bacterial Overgrowth (SIBO) as a result of inflammation. This can cause flatulence, bloating, diarrhoea and stomach cramps, but can usually be treated with antibiotics.

There is also research to suggest that there is a link between endometriosis and allergic hypersensitivities, including food intolerances which can cause stomach pain and nausea.

Gastrointestinal issues can have a significant negative effect on daily life, so seeking medical advice is recommended as medical interventions can be prescribed to reduce or relieve symptoms.

Nausea

Women with endometriosis can experience nausea, which is usually worse during the menstrual period or after eating.

Although it is not fully understood how endometriosis leads to nausea, research has found that the presence of endometrial lesions near the bowel is associated with nausea and vomiting. Lesions on the bowel can cause blockages in the gastrointestinal tract, which may contribute to nausea. However, bowel endometriosis is relatively rare, affecting approximately 5-12% of women with endometriosis.

Nausea may also be caused by pain experienced from endometrial lesions, such as cramps and pelvic pain, especially during the menstrual period.

Nausea caused by endometriosis is generally treated similarly to any other type of nausea, including staying hydrated and anti-nausea medications.

Spotting

Spotting is bleeding from the vagina outside of the regular menstrual period, and can be caused by endometriosis.

Spotting can range from light to heavy bleeding, and is commonly associated with abdomen cramps. These symptoms are likely to affect day to day activities, and have a significant impact on an individual’s lifestyle.

Spotting can also be a sign of other medical conditions as well as endometriosis, so should always be discussed with a medical professional, especially if heavy or frequent.

Bleeding After Intercourse

A common symptom of endometriosis is bleeding after sexual intercourse. This usually happens due to penetration causing the uterine tissue to become irritated and sore.

This can be unpleasant and frustrating, and it is recommended to seek medical advice to discuss this with a doctor as it may be a sign of early stage endometriosis.

Heavy Bleeding

The heaviness of a menstrual flow varies significantly between women. However, endometriosis can cause significantly heavier periods (menorrhagia), and can also be significantly longer in duration.

A heavy period can be subjective, but it is considered to be needing to change a pad or tampon every one or two hours. Endometriosis can also cause menstrual periods to contain large blood clots more frequently, which can range from bright red to brown.

If a period is so heavy that it interferes with daily activities, it should be investigated by a medical professional.

Medical management for heavy bleeding due to endometriosis commonly involves hormonal treatment such as a contraceptive pill which can help to lighten menstrual periods.

Rectal Bleeding

Endometrial lesions on the bowel (specifically the rectal wall) can cause rectal bleeding, particularly after a bowel movement. This is commonly associated with painful bowel movements and constipation.

Rectal bleeding from endometrial lesions is also commonly associated with other gastrointestinal issues such as constipation, diarrhoea, nausea, vomiting, bloating and blood-streaked faeces.

Similar to other symptoms of endometriosis, rectal bleeding is often exacerbated during the menstrual period as a result of hormonal fluctuations.

It is recommended to seek medical advice for any kind of rectal bleeding, as it may aid a diagnosis of endometriosis but could also be a symptom of another medical condition that requires investigation.

Blood In The Urine

Endometriosis in the bladder is rare and the exact cause is not yet known. The endometrial lesions can be superficial (on the outside of the bladder) or penetrating (inside the bladder wall).

A symptom of endometriosis in the bladder can be occasional blood in the urine, usually during the menstrual period. This is usually caused by inflammation of endometrial lesions on the bladder, exacerbated by hormonal fluctuations.

Blood in the urine may be a stand-alone symptom, but is likely to be coupled with other symptoms such as abdomen pain and cramping.

Frequent Urination and Bladder Symptoms

Some women with endometriosis also experience the need to urinate frequently. Frequent urination is often a secondary symptom to painful urination caused by penetrating endometrial lesions in the bladder.

Other symptoms of endometriosis in the bladder include bladder irritation, bladder urgency, pain when the bladder is full and blood in the urine.

However, these can also be symptoms of other conditions such as urinary tract infections, urinary tract calculus (hard masses in the urinary tract), interstitial cystitis (bladder pain) and bladder lesions, so it is important to seek medical advice for thorough investigations.

Fatigue

Fatigue is a common symptom of endometriosis, with approximately 54-74% of women with the condition reporting extreme tiredness. This often presents as extremely low energy levels, especially around the menstrual period.

There are numerous ways in which endometriosis can cause fatigue, with the most common cause being the body mounting an immune response to inflammation of the endometrial lesions.

There may also be a link between endometriosis and chronic fatigue syndrome, with 1 in 3 individuals with the syndrome also having endometriosis. However, this is not currently well understood and requires more research into the links between the two conditions.

Anaemia is also a common symptom of endometriosis, as a result of heavy periods and iron loss, which can cause chronic tiredness. Iron supplements are recommended to replace lost iron from heavy bleeding if diagnosed with anaemia.

Weight Gain

Endometriosis can cause hormonal fluctuations, especially during the menstrual period, which can lead to weight gain over time.

Many women report weight gain specifically around the abdomen, but general weight gain is also common. These hormonal fluctuations, specifically increased oestrogen levels, can lead to bloating and can decrease metabolism, making weight maintenance more difficult.

Fluid retention is also associated with endometriosis, and is thought to be due to inflammation of endometrial lesions. Bowel issues from endometriosis may also cause bloating and fluid retention due to constipation.

Additionally, some medications (such as oral contraceptives or an intrauterine device) can lead to an increased appetite and bloating, contributing to weight gain.

Some women also experience chronic stress or depression as a result of endometriosis symptoms, which may lead to weight gain due to lack of activity, overeating or side effects of antidepressant medications.

Infertility

Endometriosis is a common cause of infertility, with up to 30-50% of women with endometriosis experiencing infertility. This is often due to endometrial lesions in or around the reproductive organs such as the ovaries, fallopian tubes and uterus.

Endometrial lesions can form inside the ovary (endometriomas), which can damage the ovary or impede successful ovulation. Similarly, endometriosis in or around the fallopian tubes can cause infertility as the tubes may become blocked, inflamed or scarred.

Other causes of infertility from endometriosis can also include a distorted anatomy of the pelvis, inflammation of pelvic structures, altered immune system function or a suboptimal hormonal environment of the eggs.

Depending on the location and severity of endometriosis, it is still very possible to get pregnant, especially after medical interventions such as surgery or in vitro fertilisation (IVF), but should be discussed with a medical professional.

Early Signs of Endometriosis

The early signs of endometriosis are not always obvious and can vary significantly from person to person.

The most common early symptoms of endometriosis are excessive menstrual cramps, an abnormally heavy menstrual flow and pain during and/or after intercourse. However, early signs can also range from nausea to bowel and urinary disorders.

As symptoms can differ so greatly between women, it is recommended to seek medical advice early on, to aid a quicker diagnosis.

Uncommon symptoms of endometriosis

Uncommon Symptoms of Endometriosis

As symptoms of endometriosis vary greatly from person to person, diagnosis from a healthcare professional can be difficult. However, recognising that endometriosis can present in uncommon symptoms aids in diagnosis, and may help in seeking medical advice sooner.

Uncommon symptoms of endometriosis can include:

Chest Pain

Endometrial lesions can grow in the chest, resulting in thoracic endometriosis syndrome. Though many women have no symptoms, symptoms can include catamenial pneumothorax (recurrent collapsed lung) within 72 hours before or after the onset of menstruation or haemorrhage in the lungs during menstruation.

Nodules on the lung have also been linked with endometriosis, however this is very rare (in less than 5% of women who have chest pain associated with endometriosis).

Breast Pain

Although breast pain is a common symptom associated with menstruation (cyclical breast pain), it can also be a rare symptom of endometriosis.

Breast pain from endometriosis usually occurs when endometrial lesions are present in the ovaries, which can form fluid filled sacs called endometriomas. These sacs can affect hormone production from the ovaries, which can cause breast tenderness and pain.

Belly Button Pain

In very rare cases (around 1% of cases), endometrial lesions can grow in and around the belly button. Symptoms can include swelling or a lump and/or pain around the belly button during the menstrual period. These can also be symptoms of various skin conditions, so receiving advice from a medical professional will aid in correct diagnosis

Headaches

Headaches and migraines are more common in women with severe endometriosis and often worsen during menstruation. The direct link between endometriosis and headaches is not currently known, but research suggests that it could be related to genetic factors.

Heartburn and Acid Reflux

Endometriosis has also been associated with heartburn and acid reflux. This may be caused by endometrial lesions in the gastrointestinal tract, or as a result of regular use of pain medications to relieve endometriosis-related pain.

Night Sweats

Endometriosis can cause night sweats due to hormonal imbalances, in a similar way to pregnancy and menopause. Night sweats are usually caused by increased levels of the hormone oestrogen, which can cause hot flashes. These night sweats can also be associated with red skin and chills after a flash.

Hair Loss

Although there is no clear scientific research to suggest that endometriosis can cause hair loss, there is research to suggest that the consequences of endometriosis may lead to hair loss, such as chronic pain and stress.

Summary

Endometriosis is a complex condition affecting approximately 10% of women of reproductive age, with widely varying symptoms and degrees of severity.

Only a minority of women (2-25%) report experiencing all three of the most common endometriosis-specific pain symptoms (pelvic pain, painful menstrual periods and painful sexual intercourse).

Reaching a diagnosis for endometriosis can be difficult and prolonged, often with misdiagnoses as symptoms are sometimes different between women and can be similar to other conditions, such as irritable bowel syndrome or intestinal cystitis.

Unfortunately there is no easy ‘cure’ for endometriosis, with treatment and symptom management varying between individuals. However, seeking medical advice is important as symptoms can often be managed by medical interventions.

References

Neumeier M S, et al. (2023). Endometriosis Features in Women With and Without Migraine. https://doi.org/10.1089/jwh.2022.0359

Dridi D, et al. (2022). Umbilical Endometriosis: A Systematic Literature Review and Pathogenic Theory Proposal. https://doi.org/10.3390/jcm11040995

Gordon H G, et al. (2022). When pain is not the whole story: Presenting symptoms of women with endometriosis. https://doi.org/10.1111/ajo.13482

Wu Y, et al. (2022). Migraine Is More Prevalent in Advanced-Stage Endometriosis, Especially When Co-Occuring with Adenomoysis. https://doi.org/10.3389/fendo.2021.814474

Becker K, et al. (2021). Real world data on symptomology and diagnostic approaches of 27,840 women living with endometriosis. https://doi.org/10.1038/s41598-021-99681-3

O’Malley J, et al. (2021). Evidence for an Association Between Endometriosis and Allergic and Non-allergic Food Hypersensitivity Is Lacking. https://doi.org/10.3389/frph.2021.726598

Habib N, et al. (2020). Bowel Endometriosis: Current Perspectives on Diagnosis and Treatment. https://doi.org/10.2147/IJWH.S190326

Boneva R S, et al. (2019). Endometriosis as a Comorbid Condition in Chronic Fatigue Syndrome (CFS): Secondary Analysis of Data From a CFS Case-Control Study. https://doi.org/10.3389/fped.2019.00195

Nezhat C, et al. (2019). Thoracic Endometriosis Syndrome: A Review of Diagnosis and Management. https://doi.org/10.4293/JSLS.2019.00029

Surrey E S, et al. (2019). Impact of elagolix treatment on fatigue experienced by women with moderate to severe pain associated with endometriosis. https://doi.org/10.1016/j.fertnstert.2019.02.031

Foti P V, et al. (2018). Endometriosis: clinical features, MR imaging findings and pathologic correlation. https://doi.org/10.1007/s13244-017-0591-0

Ek M, et al. (2015). Gastrointestinal symptoms among endometriosis patients–A case-cohort study. https://doi.org/10.1186/s12905-015-0213-2

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