Table of ContentsView AllTable of ContentsWhere Does it Occur?CausesSymptomsDiagnosis DelaysSee an Endo SpecialistDiagnostic Testing vs. LaparascopyTreatmentRisks and ComplicationsNext in Endometriosis GuideHow Do Endometriosis Symptoms Feel?
Table of ContentsView All
View All
Table of Contents
Where Does it Occur?
Causes
Symptoms
Diagnosis Delays
See an Endo Specialist
Diagnostic Testing vs. Laparascopy
Treatment
Risks and Complications
Next in Endometriosis Guide
Endometriosisis a chronic disease in which inflammatory tissue similar to the lining of the uterus grows outside the uterus.The presence of endometriosis lesions can lead to severe pain, infertility, debilitating bowel and bladder symptoms, and more. The physical and mental symptoms of endometriosis can significantly impact your quality of life.
One in 10 people born with a uterus has endometriosis, yet it is known for a long diagnostic delay, frequent misdiagnosis, and many myths and misinformation surrounding it.
In this article, learn more about endometriosis.
Staras / Getty Images
Where Does Endometriosis Occur?
By definition, endometriosis occurs anywhere in the body that is outside the uterus.
Body locations where endometriosis may occur include:
Experts once believed that endometriosis only occurred on and near reproductive organs. Though this theory has been disproved, the myth persists and can inhibit proper diagnosis.
Endometriosis has been found in every organ, including the heart, brain, lungs, liver, and eyes.For many years, the spleen was the only organ where endometriosis had not been observed, but in 2022, researchers discovered the first case of endometriosis of the spleen.
Bowel endometriosis may occur in up to 12% of cases, most commonly in the rectum and sigmoid colon (parts of the large intestine).
Urinary tract endometriosisoccurs in approximately 1% of cases and is more common in the bladder than the ureters.
Endometriosis within the pelvic cavity is more common than extra-pelvic endometriosis (endometriosis outside the pelvis).
The Endometriosis Advice I Give to My Daughters
What Causes Endometriosis?
Thecause of endometriosisis currently unknown, but there are two primary theories: metaplasia and retrograde menstruation.
Gastrointestinal Symptoms to Never Ignore
Metaplasia
Metaplasiais when a mature cell turns into another type of cell. Theories based on metaplasia are the current leader among endometriosis experts.
The coelomic theory of endometriosis suggests that specialized cells in the body’s inner cavity turn into endometrial lesions.
Both theories could explain why endometriosis has been found in fetuses, people assigned male at birth, prepubescent girls, and outside the pelvis.
Retrograde Menstruation
Most endometriosis specialists have moved away from this theory in recent decades due to various issues, including:
Is Endometriosis Genetic?
Most scientists agree that genetics do contribute to endometriosis.You are at greater risk of endometriosis if you have a first-degree relative (e.g., mother, sister, daughter) with endometriosis. Family history increases the risk for endometriosis and the severity of symptoms and is linked to earlier symptom onset.
According to the largest-ever study on the genetics of endometriosis, published inNaturein 2023, there is a genetic link between endometriosis and 11 other inflammatory pain conditions, including:
Additional Theories
Other theories include genetics and epigenetics, immune system dysfunction, involvement of hormones, oxidative stress, stem cells, direct transplantation, and more.
Researchers and medical professionals don’t unanimously agree on one theory. Some believe that there is more than one cause of endometriosis, which could explain the different presentations and subtypes of the disease.
How Do Endometriosis Symptoms Feel?
Endometriosis Symptoms
Endometriosis can feel different to each person. Pain is the most commonendometriosis symptom. Over 60% of people with endometriosis have chronic pelvic pain.
Symptoms of endometriosis include:
Stages of EndometriosisThere arefour endometriosis stagesbased on the extent and location of endometriosis lesions and how they affect fertility.The endometriosis stage is not related to symptoms. For example, someone with stage 1 endometriosis can have severe symptoms, whereas someone with stage 4 can have no symptoms.
Stages of Endometriosis
There arefour endometriosis stagesbased on the extent and location of endometriosis lesions and how they affect fertility.The endometriosis stage is not related to symptoms. For example, someone with stage 1 endometriosis can have severe symptoms, whereas someone with stage 4 can have no symptoms.
When to See a Healthcare Provider
If you experience any endometriosis symptoms, contact a trusted healthcare provider. Discuss your symptoms and note when they occur or show signs of any possible triggers. Also, mention if you have any family history of endometriosis or unexplained infertility.
Endometriosis Back Pain: Causes and Treatments
Patterns in Endometriosis Diagnosis Delays
People with endometriosis often experience diagnosis delays. Current estimates indicate it can take seven to nine years from symptom onset to reach a correct diagnosis.
Various factors can contribute to these delays, including the following:
It is essential that these diagnostic delays be addressed because delays can contribute to the progression of the disease, infertility, deteriorating physical and mental health, financial strain from incorrect treatments or diagnostic methods, and an overall decline in quality of life.
Whom Should You See if You Suspect You Have Endometriosis?
If you suspect that you have endometriosis, see a surgeon specializing in the condition. It would be best if you aimed to see someone who spends most of their time focusing on endometriosis patients.
As in many fields of medicine, there are subspecialists in obstetrics and gynecology (OB-GYN). Though general OB-GYNs are able to treat endometriosis medically and surgically, there are some gynecologists who have chosen to subspecialize in endometriosis and chronic pelvic pain care. Patients should consider seeking care from subspecialists.
Before committing to an endometriosis specialist, ask them questions about how much of their practice is devoted to endometriosis patients (ideally, most or all of it), how frequently they performendometriosis excision surgery(ideally, multiple surgeries per week), and what their approach is to endometriosis management.
How to Find an Endometriosis Specialist
Diagnostic Testing vs. Exploratory Laparoscopy for Endometriosis
The only way to officiallydiagnose endometriosisis through histopathology (looking at the tissue under a microscope) after surgery.During an exploratorylaparoscopy(a surgical procedure), a sample of suspected endometriosis is excised (cut out). This tissue sample is then sent to apathologist(a doctor specializing in finding disease causes), who looks at it under a microscope to confirm a diagnosis.
However, a healthcare provider may recommend one or more diagnostic tests before surgery to rule out other possible diagnoses or help with surgical planning. Additional tests may include:
Keep in mind that none of those tests can diagnose endometriosis. Negative results (no signs of endometriosis found) also do not rule out endometriosis.
Because extensive testing can be expensive and time-consuming and does not preclude future surgery, some healthcare providers may recommend surgery without other diagnostic tests.
How to Get an Endometriosis Diagnosis
Endometriosis Treatment
Depending on your treatment goals, a healthcare provider may try approaches to manage your symptoms and improve your quality of life without surgery. Those treatment approaches include the following:
Unlike surgery, these medications help manage your symptoms without affecting the endometriosis lesions. Some medications, particularly the GnRH agonists, have severe and long-lasting side effects and can only be taken for limited periods.
Ablation vs. Excision Surgery for Endometriosis
Is Endometriosis Curable?
No, endometriosis is not curable. Some people with endometriosis have experienced lesion recurrence even after excision surgery.
The goals of endometriosis treatment vary from person to person and may include the following:
Complementary and Alternative Treatments
Many people seek out alternative treatments for endometriosis, which may help with symptoms while they wait for surgery or if they decide not to undergo surgery for endometriosis.
Some complementary and alternative treatments for endometriosis include:
Operations for Endometriosis
Risks and Complications Associated With Endometriosis
Leaving endometriosis untreated can impact your quality of life and lead to complications from disease progression.
As endometriosis progresses, it creates inflammation in the body leading to adhesions (scars) that can pull organs and tissues out of alignment, leading toinfertility(difficulty becoming pregnant).
Other possible complications of endometriosis can include:
Endometriosis: What You Need to Know
Summary
Endometriosis is when endometrial-like tissue grows outside the uterus, often causing painful symptoms impacting mental health and overall quality of life. About 10% of people born with a uterus have endometriosis, yet diagnosis takes an average of seven to nine years. Excision surgery is the gold standard treatment for endometriosis. Endometriosis can lead to infertility, poor quality of life, and other complications when left untreated.
22 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Gruber TM, Mechsner S.Pathogenesis of endometriosis: The origin of pain and subfertility.Cells. 2021;10(6). doi:10.3390/cells10061381World Health Organization.Endometriosis.Samani EN, Mamillapalli R, Li F, et al.Micrometastasis of endometriosis to distant organs in a murine model.Oncotarget. 2017;10(23):2282-2291. doi: 10.18632%2Foncotarget.16889Krzeczowski RM, Jackson TN, Kabbani W, et al.Splenic cysts and the case of mistaken identity.Cureus. 14(2):e22012. doi: 10.7759/cureus.22012Habib N, Centini G, Lazzeri L, et al.Bowel endometriosis: Current perspectives on diagnosis and treatment.Int J Womens Health. 2020;12:35-47. doi: 10.2147%2FIJWH.S190326Leonardi M, Espada M, Kho RM, et al.Endometriosis and the urinary tract: From diagnosis to surgical treatment.Diagnostics (Basel). 2020;10(10):771. Published 2020 Sep 30. doi:10.3390/diagnostics10100771Hirata T, Koga K, Osuga Y.Extra‐pelvic endometriosis: A review.Reprod Med Biol. 2020;19(4):323-333. doi: 10.1002%2Frmb2.12340Endometriosis Foundation of America.David Redwine, MD.Sourial S, Tempest N, Hapangama DK.Theories on the pathogenesis of endometriosis.Int J Reprod Med. 2014;2014:179515. doi: 10.1155%2F2014%2F179515Endometriosis Foundation of America.What causes endometriosis?Rahmioglu N, Mortlock S, Ghiasi M, et al.The genetic basis of endometriosis and comorbidity with other pain and inflammatory conditions.Nat Genet. 2023;55(3):423-436. doi: 10.1038/s41588-023-01323-zMaddern J, Grundy L, Castro J, Brierley SM.Pain in endometriosis.Front Cell Neurosci. 2020;14:590823. doi:10.3389/fncel.2020.590823Johnson NP, Hummelshoj L, Adamson GD, et al.World Endometriosis Society consensus on the classification of endometriosis.Hum Reprod. 2017;32(2):315-324. doi:10.1093/humrep/dew293Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519Mak J, Leonardi M, Condous G.‘Seeing is believing’: Arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117Weisberg E, Fraser I.Contraception and endometriosis: challenges, efficacy, and therapeutic importance.Open Access J Contracept. 2015;6:105-115. Published 2015 Jul 27. doi:10.2147/OAJC.S56400Dun EC, Taylor HS.Elagolix: A promising oral GnRH antagonist for endometriosis-associated pain.Oncotarget. 2017;8(59):99219-99220. doi:10.18632/oncotarget.22381Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008Kong S, Zhang YH, Liu CF, et al.The complementary and alternative medicine for endometriosis: a review of utilization and mechanism.Evid Based Complement Alternat Med. 2014;2014:146383. doi: 10.1155%2F2014%2F146383National Health Service.Complications.
22 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Gruber TM, Mechsner S.Pathogenesis of endometriosis: The origin of pain and subfertility.Cells. 2021;10(6). doi:10.3390/cells10061381World Health Organization.Endometriosis.Samani EN, Mamillapalli R, Li F, et al.Micrometastasis of endometriosis to distant organs in a murine model.Oncotarget. 2017;10(23):2282-2291. doi: 10.18632%2Foncotarget.16889Krzeczowski RM, Jackson TN, Kabbani W, et al.Splenic cysts and the case of mistaken identity.Cureus. 14(2):e22012. doi: 10.7759/cureus.22012Habib N, Centini G, Lazzeri L, et al.Bowel endometriosis: Current perspectives on diagnosis and treatment.Int J Womens Health. 2020;12:35-47. doi: 10.2147%2FIJWH.S190326Leonardi M, Espada M, Kho RM, et al.Endometriosis and the urinary tract: From diagnosis to surgical treatment.Diagnostics (Basel). 2020;10(10):771. Published 2020 Sep 30. doi:10.3390/diagnostics10100771Hirata T, Koga K, Osuga Y.Extra‐pelvic endometriosis: A review.Reprod Med Biol. 2020;19(4):323-333. doi: 10.1002%2Frmb2.12340Endometriosis Foundation of America.David Redwine, MD.Sourial S, Tempest N, Hapangama DK.Theories on the pathogenesis of endometriosis.Int J Reprod Med. 2014;2014:179515. doi: 10.1155%2F2014%2F179515Endometriosis Foundation of America.What causes endometriosis?Rahmioglu N, Mortlock S, Ghiasi M, et al.The genetic basis of endometriosis and comorbidity with other pain and inflammatory conditions.Nat Genet. 2023;55(3):423-436. doi: 10.1038/s41588-023-01323-zMaddern J, Grundy L, Castro J, Brierley SM.Pain in endometriosis.Front Cell Neurosci. 2020;14:590823. doi:10.3389/fncel.2020.590823Johnson NP, Hummelshoj L, Adamson GD, et al.World Endometriosis Society consensus on the classification of endometriosis.Hum Reprod. 2017;32(2):315-324. doi:10.1093/humrep/dew293Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519Mak J, Leonardi M, Condous G.‘Seeing is believing’: Arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117Weisberg E, Fraser I.Contraception and endometriosis: challenges, efficacy, and therapeutic importance.Open Access J Contracept. 2015;6:105-115. Published 2015 Jul 27. doi:10.2147/OAJC.S56400Dun EC, Taylor HS.Elagolix: A promising oral GnRH antagonist for endometriosis-associated pain.Oncotarget. 2017;8(59):99219-99220. doi:10.18632/oncotarget.22381Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008Kong S, Zhang YH, Liu CF, et al.The complementary and alternative medicine for endometriosis: a review of utilization and mechanism.Evid Based Complement Alternat Med. 2014;2014:146383. doi: 10.1155%2F2014%2F146383National Health Service.Complications.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Gruber TM, Mechsner S.Pathogenesis of endometriosis: The origin of pain and subfertility.Cells. 2021;10(6). doi:10.3390/cells10061381World Health Organization.Endometriosis.Samani EN, Mamillapalli R, Li F, et al.Micrometastasis of endometriosis to distant organs in a murine model.Oncotarget. 2017;10(23):2282-2291. doi: 10.18632%2Foncotarget.16889Krzeczowski RM, Jackson TN, Kabbani W, et al.Splenic cysts and the case of mistaken identity.Cureus. 14(2):e22012. doi: 10.7759/cureus.22012Habib N, Centini G, Lazzeri L, et al.Bowel endometriosis: Current perspectives on diagnosis and treatment.Int J Womens Health. 2020;12:35-47. doi: 10.2147%2FIJWH.S190326Leonardi M, Espada M, Kho RM, et al.Endometriosis and the urinary tract: From diagnosis to surgical treatment.Diagnostics (Basel). 2020;10(10):771. Published 2020 Sep 30. doi:10.3390/diagnostics10100771Hirata T, Koga K, Osuga Y.Extra‐pelvic endometriosis: A review.Reprod Med Biol. 2020;19(4):323-333. doi: 10.1002%2Frmb2.12340Endometriosis Foundation of America.David Redwine, MD.Sourial S, Tempest N, Hapangama DK.Theories on the pathogenesis of endometriosis.Int J Reprod Med. 2014;2014:179515. doi: 10.1155%2F2014%2F179515Endometriosis Foundation of America.What causes endometriosis?Rahmioglu N, Mortlock S, Ghiasi M, et al.The genetic basis of endometriosis and comorbidity with other pain and inflammatory conditions.Nat Genet. 2023;55(3):423-436. doi: 10.1038/s41588-023-01323-zMaddern J, Grundy L, Castro J, Brierley SM.Pain in endometriosis.Front Cell Neurosci. 2020;14:590823. doi:10.3389/fncel.2020.590823Johnson NP, Hummelshoj L, Adamson GD, et al.World Endometriosis Society consensus on the classification of endometriosis.Hum Reprod. 2017;32(2):315-324. doi:10.1093/humrep/dew293Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519Mak J, Leonardi M, Condous G.‘Seeing is believing’: Arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117Weisberg E, Fraser I.Contraception and endometriosis: challenges, efficacy, and therapeutic importance.Open Access J Contracept. 2015;6:105-115. Published 2015 Jul 27. doi:10.2147/OAJC.S56400Dun EC, Taylor HS.Elagolix: A promising oral GnRH antagonist for endometriosis-associated pain.Oncotarget. 2017;8(59):99219-99220. doi:10.18632/oncotarget.22381Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008Kong S, Zhang YH, Liu CF, et al.The complementary and alternative medicine for endometriosis: a review of utilization and mechanism.Evid Based Complement Alternat Med. 2014;2014:146383. doi: 10.1155%2F2014%2F146383National Health Service.Complications.
Gruber TM, Mechsner S.Pathogenesis of endometriosis: The origin of pain and subfertility.Cells. 2021;10(6). doi:10.3390/cells10061381
World Health Organization.Endometriosis.
Samani EN, Mamillapalli R, Li F, et al.Micrometastasis of endometriosis to distant organs in a murine model.Oncotarget. 2017;10(23):2282-2291. doi: 10.18632%2Foncotarget.16889
Krzeczowski RM, Jackson TN, Kabbani W, et al.Splenic cysts and the case of mistaken identity.Cureus. 14(2):e22012. doi: 10.7759/cureus.22012
Habib N, Centini G, Lazzeri L, et al.Bowel endometriosis: Current perspectives on diagnosis and treatment.Int J Womens Health. 2020;12:35-47. doi: 10.2147%2FIJWH.S190326
Leonardi M, Espada M, Kho RM, et al.Endometriosis and the urinary tract: From diagnosis to surgical treatment.Diagnostics (Basel). 2020;10(10):771. Published 2020 Sep 30. doi:10.3390/diagnostics10100771
Hirata T, Koga K, Osuga Y.Extra‐pelvic endometriosis: A review.Reprod Med Biol. 2020;19(4):323-333. doi: 10.1002%2Frmb2.12340
Endometriosis Foundation of America.David Redwine, MD.
Sourial S, Tempest N, Hapangama DK.Theories on the pathogenesis of endometriosis.Int J Reprod Med. 2014;2014:179515. doi: 10.1155%2F2014%2F179515
Endometriosis Foundation of America.What causes endometriosis?
Rahmioglu N, Mortlock S, Ghiasi M, et al.The genetic basis of endometriosis and comorbidity with other pain and inflammatory conditions.Nat Genet. 2023;55(3):423-436. doi: 10.1038/s41588-023-01323-z
Maddern J, Grundy L, Castro J, Brierley SM.Pain in endometriosis.Front Cell Neurosci. 2020;14:590823. doi:10.3389/fncel.2020.590823
Johnson NP, Hummelshoj L, Adamson GD, et al.World Endometriosis Society consensus on the classification of endometriosis.Hum Reprod. 2017;32(2):315-324. doi:10.1093/humrep/dew293
Ghai V, Jan H, Shakir F, et al.Diagnostic delay for superficial and deep endometriosis in the United Kingdom.J Obstet Gynaecol. 2020;40(1):83-89. DOI: 10.1080/01443615.2019.1603217
Ellis K, Munro D, Clarke J.Endometriosis is undervalued: a call to action.Front Glob Womens Health. 2022;3. doi: 10.3389/fgwh.2022.902371
McKinnon BD, Nirgianakis K, Ma L, et al.Computer-aided histopathological characterisation of endometriosis lesions.J Pers Med. 2022;12(9):1519. DOI: 10.3390/jpm12091519
Mak J, Leonardi M, Condous G.‘Seeing is believing’: Arguing for diagnostic laparoscopy as a diagnostic test for endometriosis.Reprod Fertil. 2022;3(3):C23-C28. doi: 10.1530/RAF-21-0117
Weisberg E, Fraser I.Contraception and endometriosis: challenges, efficacy, and therapeutic importance.Open Access J Contracept. 2015;6:105-115. Published 2015 Jul 27. doi:10.2147/OAJC.S56400
Dun EC, Taylor HS.Elagolix: A promising oral GnRH antagonist for endometriosis-associated pain.Oncotarget. 2017;8(59):99219-99220. doi:10.18632/oncotarget.22381
Pundir J, Omanwa K, Kovoor E, et al.Laparoscopic excision versus ablation for endometriosis-associated pain: an updated systematic review and meta-analysis.Journal of Minimally Invasive Gynecology. 2017;24(5):747-756. doi:10.1016/j.jmig.2017.04.008
Kong S, Zhang YH, Liu CF, et al.The complementary and alternative medicine for endometriosis: a review of utilization and mechanism.Evid Based Complement Alternat Med. 2014;2014:146383. doi: 10.1155%2F2014%2F146383
National Health Service.Complications.
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