Endometriosis

{{Short description|Disease of the female reproductive system}}

{{Distinguish|Endometritis}}

{{Use dmy dates|date=June 2024}}

{{cs1 config |name-list-style=vanc |display-authors=6}}

{{Infobox medical condition (new)

| name = Endometriosis

| image = Blausen 0349 Endometriosis.png

| caption =

| field = Gynecology

| symptoms = Pelvic pain, infertility

| complications =

| onset = Unknown. The first symptoms appear before the age of 20–30 years old.{{cite journal | vauthors = Horne AW, Missmer SA | title = Pathophysiology, diagnosis, and management of endometriosis | journal = BMJ | volume = 379 | pages = e070750 | date = November 2022 | pmid = 36375827 | doi = 10.1136/bmj-2022-070750 | hdl-access = free | hdl = 20.500.11820/a2c07717-cf08-4119-b0f4-b7f8aa50193e }}{{cite book| vauthors = McGrath PJ, Stevens BJ, Walker SM, Zempsky WT |title=Oxford Textbook of Paediatric Pain|date=2013|publisher=OUP Oxford|isbn=978-0-19-964265-6|page=300|url=https://books.google.com/books?id=xWyrAAAAQBAJ&pg=PA300|url-status=live|archive-url=https://web.archive.org/web/20170910181816/https://books.google.com/books?id=xWyrAAAAQBAJ&pg=PA300|archive-date=10 September 2017}}

| duration = Long term

| causes = Unknown

| risks = Family history

| diagnosis = Based on symptoms, medical imaging, tissue biopsy

| differential = Pelvic inflammatory disease, irritable bowel syndrome, interstitial cystitis, fibromyalgia

| prevention = Combined birth control pills, exercise, avoiding alcohol and caffeine

| treatment = NSAIDs, continuous birth control pills, intrauterine device with progestogen, surgery

| medication =

| prognosis =

| frequency = 10–15% of all women of reproductive age{{cite journal| vauthors=Parasar P, Ozcan P, Terry KL| title=Endometriosis: Epidemiology, Diagnosis and Clinical Management |journal=Curr Obstet Gynecol Rep |year=2017 |volume=6 |issue=1 |pages=34–41 |pmid=29276652 |doi=10.1007/s13669-017-0187-1 |pmc=5737931}}

| deaths = ≈100 (0.0 to 0.1 per 100,000, 2015){{cite journal |vauthors=Wang H, Naghavi M, Allen C, Barber RM, Bhutta ZA, Carter A, etal |collaboration=GBD 2015 Mortality and Causes of Death Collaborators |title=Global, regional, and national life expectancy, all-cause mortality, and cause-specific mortality for 249 causes of death, 1980-2015: a systematic analysis for the Global Burden of Disease Study 2015 |journal=Lancet |volume=388 |issue=10053 |pages=1459–1544 |date=October 2016 |pmid=27733281 |pmc=5388903 |doi=10.1016/S0140-6736(16)31012-1}}

| alt =

}}

Endometriosis is a disease in which tissue similar to the endometrium, the lining of the uterus, grows in other places in the body, outside the uterus.{{cite web|url=https://www.nichd.nih.gov/health/topics/endometri/Pages/default.aspx|title=Endometriosis: Overview|website=nichd.nih.gov|access-date=20 May 2017|url-status=live|archive-url=https://web.archive.org/web/20170518203025/https://www.nichd.nih.gov/health/topics/endometri/Pages/default.aspx|archive-date=18 May 2017}}{{cite web|url=https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/Pages/default.aspx|title=Endometriosis: Condition Information|website=nichd.nih.gov|access-date=20 May 2017|url-status=live|archive-url=https://web.archive.org/web/20170430215956/https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/Pages/default.aspx|archive-date=30 April 2017}} It occurs in women and a limited number of other female mammals. Endometrial tissue most often grows on or around reproductive organs such as the ovaries and fallopian tubes, on the outside surface of the uterus, or the tissues surrounding the uterus and the ovaries (peritoneum). It can also grow on other organs in the pelvic region like the bowels, stomach, bladder, or the cervix.{{Cite web |title=Endometriosis |url=https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis |access-date=2025-01-11 |website=Johns Hopkins Medicine}} Rarely, it can also occur in other parts of the body.

Symptoms can be very different from person to person, varying in range and intensity. About 25% of individuals have no symptoms,{{cite journal |vauthors=Koninckx PR, Meuleman C, Demeyere S, Lesaffre E, Cornillie FJ |date=April 1991 |title=Suggestive evidence that pelvic endometriosis is a progressive disease, whereas deeply infiltrating endometriosis is associated with pelvic pain |journal=Fertility and Sterility |volume=55 |issue=4 |pages=759–65 |doi=10.1016/s0015-0282(16)54244-7 |pmid=2010001 |s2cid=29998004 |doi-access=free |title-link=doi}} while for some it can be a debilitating disease.{{Cite web |title=What is endometriosis? |url=https://www.endometriosis-uk.org/what-endometriosis |access-date=2025-01-11 |website=Endometriosis UK}} Common symptoms include pelvic pain, heavy and painful periods, pain with bowel movements, painful urination, pain during sexual intercourse and infertility.{{cite journal |vauthors=Bulletti C, Coccia ME, Battistoni S, Borini A |date=August 2010 |title=Endometriosis and infertility |journal=Journal of Assisted Reproduction and Genetics |volume=27 |issue=8 |pages=441–7 |doi=10.1007/s10815-010-9436-1 |pmc=2941592 |pmid=20574791}}{{cite web |title=Endometriosis Is More Than Just 'Painful Periods' |url=https://www.yalemedicine.org/news/endometriosis-is-more-than-painful-periods |access-date=12 October 2023 |website=Yale Medicine |language=en}} Nearly half of those affected have chronic pelvic pain, while 70% feel pain during menstruation. Up to half of affected individuals are infertile. Besides physical symptoms, endometriosis can affect a person's mental health and social life.{{cite journal |vauthors=Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, Raine-Fenning N |title=The social and psychological impact of endometriosis on women's lives: a critical narrative review |journal=Human Reproduction Update |volume=19 |issue=6 |pages=625–39 |date=1 November 2013 |pmid=23884896 |doi=10.1093/humupd/dmt027 |doi-access=free |title-link=doi |hdl=2086/8845 |hdl-access=free}}

Diagnosis is usually based on symptoms and medical imaging; however, a definitive diagnosis is made through laparoscopy excision for biopsy. Other causes of similar symptoms include pelvic inflammatory disease, irritable bowel syndrome, interstitial cystitis, and fibromyalgia. Endometriosis is often misdiagnosed and many patients report being incorrectly told their symptoms are trivial or normal. Patients with endometriosis see an average of seven physicians before receiving a correct diagnosis, with an average delay of 6.7 years between the onset of symptoms and surgically obtained biopsies for diagnosing the condition.{{cite journal | vauthors = Nnoaham KE, Hummelshoj L, Webster P, d'Hooghe T, de Cicco Nardone F, de Cicco Nardone C, Jenkinson C, Kennedy SH, Zondervan KT | title = Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries | journal = Fertility and Sterility | volume = 96 | issue = 2 | pages = 366–373.e8 | date = August 2011 | pmid = 21718982 | pmc = 3679489 | doi = 10.1016/j.fertnstert.2011.05.090 }}

Worldwide, around 10% of the female population of reproductive age (190 million women) are affected by endometriosis.{{Cite web |title=Endometriosis |url=https://www.who.int/news-room/fact-sheets/detail/endometriosis |access-date=2025-01-11 |website=WHO |language=en}} Ethnic differences have been observed in endometriosis, as Southeast Asian and East Asian women are significantly more likely than White women to be diagnosed with endometriosis.

The exact cause of endometriosis is not known. Possible causes include problems with menstrual period flow, genetic factors, hormones, and problems with the immune system. Endometriosis is associated with elevated levels of the female sex hormone estrogen, as well as estrogen receptor sensitivity.{{cite journal | vauthors = Chantalat E, Valera MC, Vaysse C, Noirrit E, Rusidze M, Weyl A, Vergriete K, Buscail E, Lluel P, Fontaine C, Arnal JF, Lenfant F | title = Estrogen Receptors and Endometriosis | journal = International Journal of Molecular Sciences | volume = 21 | issue = 8 | page = 2815 | date = April 2020 | pmid = 32316608 | pmc = 7215544 | doi = 10.3390/ijms21082815 | publisher = MDPI AG | quote = "These mechanisms might act in unison to cause endometriosis, but the main trophic factor in endometriosis is estrogen and estrogen exposure plays a crucial role in the development of the disease via estrogen receptors (ERs) [1]." | doi-access = free }} Estrogen exposure worsens the inflammatory symptoms of endometriosis by stimulating an immune response.

While there is no cure for endometriosis, several treatments may improve symptoms. This may include pain medication, hormonal treatments or surgery. The recommended pain medication is usually a non-steroidal anti-inflammatory drug (NSAID), such as naproxen. Taking the active component of the birth control pill continuously or using an intrauterine device with progestogen may also be useful. Gonadotropin-releasing hormone agonist (GnRH agonist) may improve the ability of those who are infertile to conceive. Surgical removal of endometriosis may be used to treat those whose symptoms are not manageable with other treatments.{{cite web |url=https://www.womenshealth.gov/a-z-topics/endometriosis |title=Endometriosis |website=Office on Women's Health|date=13 February 2017|access-date=20 May 2017 |url-status=live|archive-url=https://web.archive.org/web/20170513091846/https://www.womenshealth.gov/a-z-topics/endometriosis |archive-date=13 May 2017}} Surgeons use ablation or excision to remove endometriosis lesions. Excision is the most complete treatment for endometriosis, as it involves cutting out the lesions, as opposed to ablation, which is the burning of the lesions, which leaves no samples for biopsy to confirm endometriosis.

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Signs and symptoms

Pain and infertility are common symptoms, although 20–25% of affected women are asymptomatic. The presence of pain symptoms is associated with the type of endometrial lesions, as 50% of women with typical lesions, 10% of women with cystic ovarian lesions, and 5% of women with deep endometriosis do not have pain.{{cite journal | vauthors = Koninckx PR, Ussia A, Mashiach R, Vilos G, Martin DC | title = Endometriosis Can Cause Pain at a Distance | journal = Journal of Obstetrics and Gynaecology Canada | volume = 43 | issue = 9 | pages = 1035–1036 | date = September 2021 | pmid = 34481578 | doi = 10.1016/j.jogc.2021.06.002 | publisher = Elsevier BV | s2cid = 237422801 | doi-access = free | title-link = doi }}

=Pelvic pain=

A major symptom of endometriosis is recurring pelvic pain. The pain can range from mild to severe cramping or stabbing pain that occurs on both sides of the pelvis, in the lower back and rectal area, and even down the legs. The amount of pain a person feels correlates weakly with the extent or stage (1 through 4) of endometriosis, with some individuals having little or no pain despite having extensive endometriosis or endometriosis with scarring, while others may have severe pain even though they have only a few small areas of endometriosis.{{cite journal | vauthors = Stratton P, Berkley KJ | title = Chronic pelvic pain and endometriosis: translational evidence of the relationship and implications | journal = Human Reproduction Update | volume = 17 | issue = 3 | pages = 327–46 | year = 2011 | pmid = 21106492 | pmc = 3072022 | doi = 10.1093/humupd/dmq050 }} The most severe pain is typically associated with menstruation. Pain can also start a week before a menstrual period, during, and even a week after a menstrual period, or it can be constant. The pain can be debilitating and result in emotional stress.{{cite journal|vauthors=Colette S, Donnez J|date=July 2011|title=Are aromatase inhibitors effective in endometriosis treatment?|journal=Expert Opinion on Investigational Drugs|volume=20|issue=7|pages=917–31|doi=10.1517/13543784.2011.581226|pmid=21529311|s2cid=19463907}} Symptoms of endometriosis-related pain may include:

  • Dysmenorrhea (64%){{cite journal | vauthors = Gałczyński K, Jóźwik M, Lewkowicz D, Semczuk-Sikora A, Semczuk A | title = Ovarian endometrioma - a possible finding in adolescent girls and young women: a mini-review | journal = Journal of Ovarian Research | volume = 12 | issue = 1 | page = 104 | date = November 2019 | pmid = 31699129 | pmc = 6839067 | doi = 10.1186/s13048-019-0582-5 | doi-access = free | title-link = doi }}50px Text was copied from this source, which is available under a [https://creativecommons.org/licenses/by/4.0/ Creative Commons Attribution 4.0 International License] {{Webarchive|url=https://web.archive.org/web/20171016050101/https://creativecommons.org/licenses/by/4.0/ |date=16 October 2017 }}. – painful, sometimes disabling cramps during the menstrual period; pain may get worse over time (progressive pain), also lower back pains linked to the pelvis
  • Chronic pelvic pain – typically accompanied by lower back pain or abdominal pain
  • Dyspareunia – painful sexual intercourse
  • Dysuria – urinary urgency, frequency, and sometimes painful voiding{{cite web|url=https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/symptoms|title=What are the symptoms of endometriosis?|author=|website=National Institutes of Health|access-date=4 October 2018|archive-date=27 January 2021|archive-url=https://web.archive.org/web/20210127204323/https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/symptoms|url-status=live}}{{Failed verification|date=December 2024|reason=The reference mentions neither urgency nor frequency, only painful voiding}}
  • Mittelschmerz – pain associated with ovulation{{cite journal | vauthors = Brown J, Farquhar C | title = Endometriosis: an overview of Cochrane Reviews | journal = The Cochrane Database of Systematic Reviews | issue = 3 | pages = CD009590 | date = March 2014 | volume = 2014 | pmid = 24610050 | doi = 10.1002/14651858.cd009590.pub2 | pmc = 6984415 }}
  • Bodily movement pain – present during exercise, standing, or walking

Compared with patients with superficial endometriosis, those with deep disease appear to be more likely to report shooting rectal pain and a sense of their insides being pulled down.{{cite journal | vauthors = Ballard K, Lane H, Hudelist G, Banerjee S, Wright J | title = Can specific pain symptoms help in the diagnosis of endometriosis? A cohort study of women with chronic pelvic pain | journal = Fertility and Sterility | volume = 94 | issue = 1 | pages = 20–7 | date = June 2010 | pmid = 19342028 | doi = 10.1016/j.fertnstert.2009.01.164 | doi-access = free | title-link = doi }} Individual pain areas and intensity appear to be unrelated to the surgical diagnosis, and the area of pain is unrelated to the area of endometriosis.

There are multiple causes of pain. Endometriosis lesions react to hormonal stimulation and may "bleed" during menstruation. The blood accumulates locally if not cleared shortly by the immune, circulatory, and lymphatic systems. This accumulation can lead to swelling, which triggers inflammation via cytokines, resulting in pain. Another source of pain is organ dislocation that arises from adhesion binding internal organs together. The ovaries, the uterus, the oviducts, the peritoneum, and the bladder can all be bound together. Pain triggered in this way can last throughout the menstrual cycle, not just during menstrual periods.{{page needed|date=April 2015}}{{cite book|vauthors=Murray MT, Pizzorno J |title=The Encyclopedia of Natural Medicine|date=2012|publisher=Simon and Schuster|location=New York, NY|edition=3rd}}

Additionally, endometriotic lesions can develop an independent nerve supply, creating a direct and two-way interaction between lesions and the central nervous system. This interaction can produce a variety of individual differences in pain that, in some cases, become independent of the disease itself. Nerve fibers and blood vessels are thought to grow into endometriosis lesions by a process known as neuroangiogenesis.{{cite journal | vauthors = Asante A, Taylor RN | title = Endometriosis: the role of neuroangiogenesis | journal = Annual Review of Physiology | volume = 73 | pages = 163–82 | date = 2011 | pmid = 21054165 | doi = 10.1146/annurev-physiol-012110-142158 }}

=Infertility=

{{Main|Endometriosis and infertility}}

About a third of women with infertility have endometriosis. Among those with endometriosis, about 40% are infertile. The pathogenesis of infertility varies by disease stage: in early-stage disease, it is hypothesised to result from an inflammatory response that impairs various aspects of conception, whereas in later stages, distorted pelvic anatomy and adhesions contribute to impaired fertilisation.{{cite web|url=https://www.uptodate.com/contents/treatment-of-infertility-in-women-with-endometriosis|title=Treatment of infertility in women with endometriosis|website=uptodate.com|access-date=18 December 2017|archive-date=8 August 2020|archive-url=https://web.archive.org/web/20200808155241/https://www.uptodate.com/contents/treatment-of-infertility-in-women-with-endometriosis|url-status=live}}

=Other=

Bowel endometriosis may include symptoms like diarrhea, constipation, tenesmus, dyschezia, and, rarely, rectal bleeding. Other symptoms include chronic fatigue, nausea and vomiting, migraines, low-grade fevers, heavy (44%) and/or irregular periods (60%), and hypoglycemia.{{cite journal | vauthors = Wolthuis AM, Meuleman C, Tomassetti C, D'Hooghe T, de Buck van Overstraeten A, D'Hoore A | title = Bowel endometriosis: colorectal surgeon's perspective in a multidisciplinary surgical team | journal = World Journal of Gastroenterology | volume = 20 | issue = 42 | pages = 15616–23 | date = November 2014 | pmid = 25400445 | pmc = 4229526 | doi = 10.3748/wjg.v20.i42.15616 | doi-access = free | title-link = doi }} Endometriosis is associated with certain types of cancers, notably some types of ovarian cancer,{{cite journal | vauthors = Pearce CL, Templeman C, Rossing MA, Lee A, Near AM, Webb PM, Nagle CM, Doherty JA, Cushing-Haugen KL, Wicklund KG, Chang-Claude J, Hein R, Lurie G, Wilkens LR, Carney ME, Goodman MT, Moysich K, Kjaer SK, Hogdall E, Jensen A, Goode EL, Fridley BL, Larson MC, Schildkraut JM, Palmieri RT, Cramer DW, Terry KL, Vitonis AF, Titus LJ, Ziogas A, Brewster W, Anton-Culver H, Gentry-Maharaj A, Ramus SJ, Anderson AR, Brueggmann D, Fasching PA, Gayther SA, Huntsman DG, Menon U, Ness RB, Pike MC, Risch H, Wu AH, Berchuck A | title = Association between endometriosis and risk of histological subtypes of ovarian cancer: a pooled analysis of case-control studies | journal = The Lancet. Oncology | volume = 13 | issue = 4 | pages = 385–94 | date = April 2012 | pmid = 22361336 | pmc = 3664011 | doi = 10.1016/S1470-2045(11)70404-1 }} non-Hodgkin's lymphoma and brain cancer.{{cite journal | vauthors = Audebert A | title = [Women with endometriosis: are they different from others?] | language = fr | journal = Gynécologie, Obstétrique & Fertilité | volume = 33 | issue = 4 | pages = 239–46 | date = April 2005 | pmid = 15894210 | doi = 10.1016/j.gyobfe.2005.03.010 | trans-title = Women with endometriosis: are they different from others? }} Endometriosis is however unrelated to endometrial cancer.{{cite journal | vauthors = Rowlands IJ, Nagle CM, Spurdle AB, Webb PM | title = Gynecological conditions and the risk of endometrial cancer | journal = Gynecologic Oncology | volume = 123 | issue = 3 | pages = 537–41 | date = December 2011 | pmid = 21925719 | doi = 10.1016/j.ygyno.2011.08.022 }}

Rarely, endometriosis can cause endometrium-like tissue to be found in other parts of the body. Thoracic endometriosis occurs when endometrium-like tissue implants in the lungs or pleura. Manifestations of this include coughing up blood, a collapsed lung, or bleeding into the pleural space.{{cite journal | vauthors = Rousset P, Rousset-Jablonski C, Alifano M, Mansuet-Lupo A, Buy JN, Revel MP | title = Thoracic endometriosis syndrome: CT and MRI features | journal = Clinical Radiology | volume = 69 | issue = 3 | pages = 323–330 | date = March 2014 | pmid = 24331768 | doi = 10.1016/j.crad.2013.10.014 }} Endometriosis may also affect the nearby colon, which in rare situations may progress to partial obstruction, requiring emergency surgery.{{cite journal | vauthors = Sarofim M, Attwell-Heap A, Trautman J, Kwok A, Still A | title = Unusual case of acute large bowel obstruction: endometriosis mimicking sigmoid malignancy | journal = ANZ Journal of Surgery | volume = 89 | issue = 11 | pages = E542–E543 | date = November 2019 | pmid = 30277298 | doi = 10.1111/ans.14869 | s2cid = 52902719 }}

Stress may be a contributing factor or a consequence of endometriosis.{{cite journal |vauthors=Reis FM, Coutinho LM, Vannuccini S, Luisi S, Petraglia F |title=Is Stress a Cause or a Consequence of Endometriosis? |journal=Reproductive Sciences |volume=27 |issue=1 |pages=39–45 |date=January 2020 |pmid=32046437 |doi=10.1007/s43032-019-00053-0 |s2cid=209896867}}

=Complications=

== Physical health ==

Complications of endometriosis include internal scarring, adhesions, pelvic cysts, ovarian chocolate cysts, ruptured cysts, and bowel and ureter obstruction resulting from pelvic adhesions.{{cite journal |vauthors=Acosta S, Leandersson U, Svensson SE, Johnsen J |title=Fallbeskrivning. Endometrios orsakade kolonileus, uretärobstruktion och hypertoni |language=sv |journal=Läkartidningen |volume=98 |issue=18 |pages=2208–2212 |date=May 2001 |pmid=11402601 |url=https://lup.lub.lu.se/search/publication/1121619 |trans-title=A case report. Endometriosis caused colonic ileus, ureteral obstruction and hypertension}} Endometriosis-associated infertility may result from scar formation and anatomical distortions caused by the condition.

Ovarian endometriosis may complicate pregnancy through decidualization, abscess formation, and/or rupture.{{cite journal | vauthors = Ueda Y, Enomoto T, Miyatake T, Fujita M, Yamamoto R, Kanagawa T, Shimizu H, Kimura T |date=June 2010 |title=A retrospective analysis of ovarian endometriosis during pregnancy |journal=Fertility and Sterility |volume=94 |issue=1 |pages=78–84 |pmid=19356751 |doi=10.1016/j.fertnstert.2009.02.092 |doi-access=free |title-link=doi}}

Thoracic endometriosis can be associated with recurrent thoracic endometriosis syndrome which manifests during menstrual periods. It includes catamenial pneumothorax in 73% of women, catamenial hemothorax in 14%, catamenial hemoptysis in 7%, and pulmonary nodules in 6%.{{cite journal | vauthors = Visouli AN, Zarogoulidis K, Kougioumtzi I, Huang H, Li Q, Dryllis G, Kioumis I, Pitsiou G, Machairiotis N, Katsikogiannis N, Papaiwannou A, Lampaki S, Zaric B, Branislav P, Porpodis K, Zarogoulidis P | title = Catamenial pneumothorax | journal = Journal of Thoracic Disease | volume = 6 | issue = Suppl 4 | pages = S448-60 | date = October 2014 | pmid = 25337402 | pmc = 4203986 | doi = 10.3978/j.issn.2072-1439.2014.08.49 }}

A 20-year study involving 12,000 women with endometriosis found that individuals under 40 are three times more likely to develop heart problems compared to their healthy peers.{{cite journal |vauthors=Wise J |title=Women with endometriosis show higher risk for heart disease |journal=BMJ |volume=353 |pages=i1851 |date=April 2016 |pmid=27036948 |doi=10.1136/bmj.i1851 |s2cid=28699291}}

A study indicated that 39% of women with surgically confirmed non-graded endometriosis had a 270% higher risk for ectopic pregnancy and a 76% higher risk for miscarriage compared to their peers. For women with deep endometriosis (>5 mm invasion, ASRM Stage II and higher), the risk of miscarriage increased by 298%.{{cite journal | vauthors = Schliep KC, Farland LV, Pollack AZ, Buck Louis G, Stanford JB, Allen-Brady K, Varner MW, Kah K, Peterson CM | title = Endometriosis diagnosis, staging and typology and adverse pregnancy outcome history | journal = Paediatric and Perinatal Epidemiology | volume = 36 | issue = 6 | pages = 771–781 | date = November 2022 | pmid = 35570746 | pmc = 9588543 | doi = 10.1111/ppe.12887 }}{{cite web |date=2015 |title=ESHRE2015: Endometriosis associated with a greater risk of complications in pregnancy |url=https://endometriosis.org/news/congress-highlights/eshre2015-endometriosis-associated-with-a-greater-risk-of-complications-in-pregnancy/#:~:text=After%20adjustments%20for%20age%20and%20previous%20pregnancy%2C%20results,three%20times%20higher%20for%20ectopic%20pregnancy%20%28OR%202.7%29 |url-status=live |archive-url=https://web.archive.org/web/20240213213247/https://endometriosis.org/news/congress-highlights/eshre2015-endometriosis-associated-with-a-greater-risk-of-complications-in-pregnancy/#:~:text=After%20adjustments%20for%20age%20and%20previous%20pregnancy%2C%20results,three%20times%20higher%20for%20ectopic%20pregnancy%20%28OR%202.7%29 |archive-date=13 February 2024 |access-date=14 February 2024 |website=endometriosis.org |publisher=European Society of Human Reproduction and Embryology |vauthors=Saraswat L}}

Women with endometriosis also face a significantly increased risk of experiencing ante- and postpartum hemorrhage as well as a 170% increased risk of severe pre-eclampsia during pregnancy.

Endometriosis slightly increases the risk (about 1% or less) of developing ovarian, breast, and thyroid cancers compared to women without the condition.{{cite journal | vauthors = Kvaskoff M, Mahamat-Saleh Y, Farland LV, Shigesi N, Terry KL, Harris HR, Roman H, Becker CM, As-Sanie S, Zondervan KT, Horne AW, Missmer SA | title = Endometriosis and cancer: a systematic review and meta-analysis | journal = Human Reproduction Update | volume = 27 | issue = 2 | pages = 393–420 | date = February 2021 | pmid = 33202017 | doi = 10.1093/humupd/dmaa045 | publisher = Oxford University Press (OUP) | hdl = 20.500.11820/fa3c779d-3cc7-4d0d-b93a-d7176fd8244d | hdl-access = free }}

The mortality rates associated with endometriosis are low, with unadjusted and age-standardized death rates of 0.1 and 0.0 per 100,000, respectively.{{cite journal | vauthors = Vos T, Allen C, Arora M, Barber RM, Bhutta ZA, Brown A, Carter A, Casey DC, Charlson FJ, Chen AZ, Coggeshall M, Cornaby L, Dandona L, Dicker DJ, Dilegge T, Erskine HE, Ferrari AJ, Fitzmaurice C, Fleming T, Forouzanfar MH, Fullman N, Gething PW, Goldberg EM, Graetz N, Haagsma JA, Hay SI, Johnson CO, Kassebaum NJ, Kawashima T, Kemmer L | title = Global, regional, and national incidence, prevalence, and years lived with disability for 310 diseases and injuries, 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015 | journal = Lancet | volume = 388 | issue = 10053 | pages = 1545–1602 | date = October 2016 | pmid = 27733282 | pmc = 5055577 | doi = 10.1016/S0140-6736(16)31678-6 | title-link = doi | doi-access = free }}

Sciatic endometriosis, also called catamenial or cyclical sciatica, is a rare form where endometriosis affects the sciatic nerve. Diagnosis is usually confirmed through MRI or CT-myelography.{{cite journal | vauthors = Gandhi J, Wilson AL, Liang R, Weissbart SJ, Khan SA | title=Sciatic endometriosis: A narrative review of an unusual neurogynecologic condition | journal=Journal of Endometriosis and Pelvic Pain Disorders | publisher=SAGE Publications | volume=13 | issue=1 | date=11 November 2020 | issn=2284-0265 | doi=10.1177/2284026520970813 | pages=3–9| s2cid=228834273 }}

Endometriosis can also impact a woman's fetus or neonate, increasing the risks for congenital malformations, preterm delivery, and higher neonatal death rates.{{cite journal | vauthors = Berlac JF, Hartwell D, Skovlund CW, Langhoff-Roos J, Lidegaard Ø | title = Endometriosis increases the risk of obstetrical and neonatal complications | journal = Acta Obstetricia et Gynecologica Scandinavica | volume = 96 | issue = 6 | pages = 751–760 | date = June 2017 | pmid = 28181672 | doi = 10.1111/aogs.13111 }}

Endometriosis can lead to ovarian cysts (endometriomas), adhesions, and damage to the fallopian tubes or ovaries, all of which can interfere with ovulation and fertilization. Treatment for endometriosis often includes hormonal therapies, pain management, and in some cases, surgery to remove the endometrial tissue. For women who struggle with infertility due to endometriosis, assisted reproductive technologies such as in vitro fertilization (IVF) may be recommended, sometimes in combination with surgical treatment to improve fertility outcomes.

== Mental health ==

"Endometriosis is associated with an elevated risk of developing depression and anxiety disorders".{{cite journal | vauthors = Jia SZ, Leng JH, Shi JH, Sun PR, Lang JH | title = Health-related quality of life in women with endometriosis: a systematic review | journal = Journal of Ovarian Research | volume = 5 | issue = 1 | pages = 29 | date = October 2012 | pmid = 23078813 | pmc = 3507705 | doi = 10.1186/1757-2215-5-29 | title-link = doi | doi-access = free }} Studies suggest this is partially due to the pelvic pain experienced by endometriosis patients. {{blockquote| "It has been demonstrated that pelvic pain has significant negative effects on women's mental health and quality of life; in particular, women who suffer from pelvic pain report high levels of anxiety and depression, loss of working ability, limitations in social activities and a poor quality of life" {{cite journal | vauthors = Low WY, Edelmann RJ, Sutton C | title = A psychological profile of endometriosis patients in comparison to patients with pelvic pain of other origins | journal = Journal of Psychosomatic Research | volume = 37 | issue = 2 | pages = 111–116 | date = February 1993 | pmid = 8463987 | doi = 10.1016/0022-3999(93)90077-S }}

}}

Mental health concerns like depression and anxiety can also result due to poor diagnostic procedures related to cultural norms where women's concerns are devalued or ignored, especially by medical professionals.Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, et al. (1 November 2013). "The social and psychological impact of endometriosis on women's lives: a critical narrative review". Human Reproduction Update. 19 (6): 625–39. doi:10.1093/humupd/dmt027. hdl:2086/8845. PMID 23884896.Nnoaham KE, Hummelshoj L, Webster P, d'Hooghe T, de Cicco Nardone F, de Cicco Nardone C, et al. (August 2011). "Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries". Fertility and Sterility. 96 (2): 366–373.e8. doi:10.1016/j.fertnstert.2011.05.090. PMC 3679489. PMID 21718982.

Risk factors

=Genetics=

Endometriosis is a heritable condition influenced by both genetic and environmental factors, a genetic disorder of polygenic/multifactorial inheritance{{cite journal | vauthors = Bischoff F, Simpson JL | title = Genetics of endometriosis: heritability and candidate genes | journal = Best Practice & Research. Clinical Obstetrics & Gynaecology | volume = 18 | issue = 2 | pages = 219–232 | date = April 2004 | pmid = 15157639 | doi = 10.1016/j.bpobgyn.2004.01.004 }} acquired via affected genes from either a person's father or mother. For example, children or siblings of women with endometriosis are at higher risk of developing endometriosis themselves; low progesterone levels may be genetic, and may contribute to a hormone imbalance.Kapoor D, Davila W (2005). [http://www.emedicine.com/med/topic3419.htm Endometriosis], {{webarchive |url=https://web.archive.org/web/20071111045258/http://www.emedicine.com/MED/topic3419.htm |date=11 November 2007 }} eMedicine. Individuals with an affected first-degree relative have an approximate six-fold increase incidence of endometriosis.{{cite journal | vauthors = Giudice LC, Kao LC | title = Endometriosis | journal = Lancet | volume = 364 | issue = 9447 | pages = 1789–1799 | year = 2004 | pmid = 15541453 | doi = 10.1016/S0140-6736(04)17403-5 | s2cid = 208788714 }}

Inheritance is significant but not the sole risk factor for endometriosis. Studies attribute 50% of the risk to genetics, the other 50% to environmental factors.{{cite journal | vauthors = Montgomery GW, Mortlock S, Giudice LC | title = Should Genetics Now Be Considered the Pre-eminent Etiologic Factor in Endometriosis? | journal = Journal of Minimally Invasive Gynecology | volume = 27 | issue = 2 | pages = 280–286 | date = February 2020 | pmid = 31683028 | pmc = 7863762 | doi = 10.1016/j.jmig.2019.10.020 }} It has been proposed that endometriosis may result from multiple mutations within target genes, in a mechanism similar to the development of cancer. In this case, the mutations may be either somatic or heritable.

A 2019 genome-wide association study (GWAS) review enumerated 36 genes with mutations associated with endometriosis development.{{cite journal | vauthors = Vassilopoulou L, Matalliotakis M, Zervou MI, Matalliotaki C, Krithinakis K, Matalliotakis I, Spandidos DA, Goulielmos GN | title = Defining the genetic profile of endometriosis | journal = Experimental and Therapeutic Medicine | volume = 17 | issue = 5 | pages = 3267–3281 | date = May 2019 | pmid = 30988702 | pmc = 6447774 | doi = 10.3892/etm.2019.7346 }} Nine chromosome loci were robustly replicated:{{cite journal | vauthors = Rahmioglu N, Nyholt DR, Morris AP, Missmer SA, Montgomery GW, Zondervan KT | title = Genetic variants underlying risk of endometriosis: insights from meta-analysis of eight genome-wide association and replication datasets | journal = Human Reproduction Update | volume = 20 | issue = 5 | pages = 702–716 | date = September 2014 | pmid = 24676469 | pmc = 4132588 | doi = 10.1093/humupd/dmu015 }}{{cite web|url=https://www.ncbi.nlm.nih.gov/gene/94025|title=MUC16 mucin 16, cell surface associated [Homo sapiens (human)] - Gene - NCBI|website=ncbi.nlm.nih.gov|access-date=13 November 2018|archive-date=13 November 2018|archive-url=https://web.archive.org/web/20181113225150/https://www.ncbi.nlm.nih.gov/gene/94025|url-status=live}}{{cite web|url=https://www.ncbi.nlm.nih.gov/gene/2335|title=FN1 fibronectin 1 [Homo sapiens (human)] - Gene - NCBI|website=ncbi.nlm.nih.gov|access-date=13 November 2018|archive-date=8 June 2019|archive-url=https://web.archive.org/web/20190608083214/https://www.ncbi.nlm.nih.gov/gene/2335|url-status=live}}{{cite journal | vauthors = Sapkota Y, Steinthorsdottir V, Morris AP, Fassbender A, Rahmioglu N, De Vivo I, Buring JE, Zhang F, Edwards TL, Jones S, O D, Peterse D, Rexrode KM, Ridker PM, Schork AJ, MacGregor S, Martin NG, Becker CM, Adachi S, Yoshihara K, Enomoto T, Takahashi A, Kamatani Y, Matsuda K, Kubo M, Thorleifsson G, Geirsson RT, Thorsteinsdottir U, Wallace LM, Yang J, Velez Edwards DR, Nyegaard M, Low SK, Zondervan KT, Missmer SA, D'Hooghe T, Montgomery GW, Chasman DI, Stefansson K, Tung JY, Nyholt DR | title = Meta-analysis identifies five novel loci associated with endometriosis highlighting key genes involved in hormone metabolism | journal = Nature Communications | volume = 8 | issue = 1 | pages = 15539 | date = May 2017 | pmid = 28537267 | pmc = 5458088 | doi = 10.1038/ncomms15539 | publisher = Springer Science and Business Media LLC | bibcode = 2017NatCo...815539S }}

class="wikitable"
Chromosome

!Gene/cytoband

!Gene Product

!Function

1

|WNT4/1p36.12

|Wingless-type MMTV integration site family member 4

|Vital for the development of the female reproductive organs

2

|GREB1/2p25.1

|Growth regulation by estrogen in breast cancer 1/Fibronectin 1

|Early response gene in the estrogen regulation pathway/Cell adhesion and migration processes

2

|ETAA1/2p14

|(ETAA1 Activator Of ATR Kinase) is a protein-coding gene.

|Diseases associated with ETAA1 include Adult Lymphoma and Restless Legs Syndrome

2

|IL1A/2q13

|Interleukin 1 alpha (IL-1α) is encoded by the IL1A gene.

|Interleukin 1 alpha (IL-1α) is encoded by the IL1A gene.

4

|KDR/4q12

|KDR is the human gene encoding kinase insert domain receptor also known as vascular endothelial growth factor receptor 2 (VEGFR-2)

|Primary mediator of VEGF-induced endothelial proliferation, survival, migration, tubular morphogenesis and sprouting{{cite web |title=GeneCards®: The Human Gene Database |url=https://www.genecards.org/cgi-bin/carddisp.pl?gene=KDR&keywords=kdr |website=www.genecards.org |publisher=Weizmann Institute of Science |access-date=7 February 2024 |archive-date=7 February 2024 |archive-url=https://web.archive.org/web/20240207163420/https://www.genecards.org/cgi-bin/carddisp.pl?gene=KDR&keywords=kdr |url-status=live }}

6

|ID4/6p22.3

|Inhibitor of DNA binding 4

|Ovarian oncogene, biological function unknown

7

|7p15.2

|Transcription factors

|Influence transcriptional regulation of uterine development

9

|CDKN2BAS/9p21.3

|Cyclin-dependent kinase inhibitor 2B antisense RNA

|Regulation of tumour suppressor genes

12

|VEZT/12q22

|Vezatin, an adherens junction transmembrane protein

|Tumor suppressor gene

There are many findings of altered gene expression and epigenetics, but both of these can also be a secondary result of, for example, environmental factors and altered metabolism. Examples of altered gene expression include that of miRNAs.

=Environmental toxins=

Some factors associated with endometriosis include:

  • Prolonged exposure to naturally synthesized estrogen; for example, from late menopause{{cite journal | vauthors = Giudice LC | title = Clinical practice. Endometriosis | journal = The New England Journal of Medicine | volume = 362 | issue = 25 | pages = 2389–98 | date = June 2010 | pmid = 20573927 | pmc = 3108065 | doi = 10.1056/NEJMcp1000274 }} or early menarche{{cite journal | vauthors = Treloar SA, Bell TA, Nagle CM, Purdie DM, Green AC | title = Early menstrual characteristics associated with subsequent diagnosis of endometriosis | journal = American Journal of Obstetrics and Gynecology | volume = 202 | issue = 6 | pages = 534.e1–6 | date = June 2010 | pmid = 20022587 | doi = 10.1016/j.ajog.2009.10.857 | url = http://hdl.cqu.edu.au/10018/58278 | url-access = subscription }}{{Dead link|date=March 2024 |bot=InternetArchiveBot |fix-attempted=yes }}{{cite journal | vauthors = Nnoaham KE, Webster P, Kumbang J, Kennedy SH, Zondervan KT | title = Is early age at menarche a risk factor for endometriosis? A systematic review and meta-analysis of case-control studies | journal = Fertility and Sterility | volume = 98 | issue = 3 | pages = 702–712.e6 | date = September 2012 | pmid = 22728052 | pmc = 3502866 | doi = 10.1016/j.fertnstert.2012.05.035 }}
  • Obstruction of menstrual outflow; for example, in Müllerian anomalies

Potential toxins:

  • Dioxins - Several studies have investigated the potential link between exposure to dioxins and endometriosis, but evidence is equivocal and potential mechanisms are poorly understood.{{cite journal | vauthors = Anger DL, Foster WG | title = The link between environmental toxicant exposure and endometriosis | journal = Frontiers in Bioscience | volume = 13 | issue = 13| pages = 1578–93 | date = January 2008 | pmid = 17981650 | doi = 10.2741/2782 | s2cid = 12813384 | doi-access = free | title-link = doi }} A 2004 review of studies of dioxin and endometriosis concluded that "the human data supporting the dioxin-endometriosis association are scanty and conflicting",{{cite journal | vauthors = Guo SW | title = The link between exposure to dioxin and endometriosis: a critical reappraisal of primate data | journal = Gynecologic and Obstetric Investigation | volume = 57 | issue = 3 | pages = 157–73 | year = 2004 | pmid = 14739528 | doi = 10.1159/000076374 | s2cid = 29701466 }} and a 2009 follow-up review also found that there was "insufficient evidence" in support of a link between dioxin exposure and developing endometriosis.{{cite journal | vauthors = Guo SW, Simsa P, Kyama CM, Mihályi A, Fülöp V, Othman EE, D'Hooghe TM | title = Reassessing the evidence for the link between dioxin and endometriosis: from molecular biology to clinical epidemiology | journal = Molecular Human Reproduction | volume = 15 | issue = 10 | pages = 609–24 | date = October 2009 | pmid = 19744969 | doi = 10.1093/molehr/gap075 | doi-access = free | title-link = doi }}
  • Endocrine-disrupting chemicals (EDCs)- A wider class of hormonally active agents, to which dioxin belongs, consists of both natural and manmade compounds, e.g., bisphenols, phthalates, pesticides (chlorpyrifos, hexachlorobenzene) and polychlorinated biphenyls (PCBs).{{cite journal | vauthors = Ahn C, Jeung EB | title = Endocrine-Disrupting Chemicals and Disease Endpoints | journal = International Journal of Molecular Sciences | volume = 24 | issue = 6 | page = 5342 | date = March 2023 | pmid = 36982431 | pmc = 10049097 | doi = 10.3390/ijms24065342 | doi-access = free }} Dietary uptake represents a significant source of EDC exposure via consumption of food, water and beverages, but exposure can also occur through ingestion of EDC dust and inhalation of its gases or particles in the air. Most EDCs are lipophilic, allowing them to bioaccumulate in adipose tissue (body fat) and increase in concentration. Bisphenol A (BPA), bisphenol S (BPS), phthalates, pesticides and PCBs all have a suspected linkage to endometriosis, though have not been definitively proven as being causative.{{cite book | vauthors = Rumph JT, Stephens VR, Archibong AE, Osteen KG, Bruner-Tran KL | chapter = Environmental Endocrine Disruptors and Endometriosis | title = Advances in Anatomy, Embryology, and Cell Biology | volume = 232 | pages = 57–78 | date = 2020 | pmid = 33278007 | pmc = 7978485 | doi = 10.1007/978-3-030-51856-1_4 | isbn = 978-3-030-51855-4 | series = Advances in Anatomy, Embryology and Cell Biology }}

Pathophysiology

File:Peritoneal endometriosis.jpg image of endometriotic lesions at the peritoneum of the pelvic wall]]

While the exact cause of endometriosis remains unknown, many theories have been presented to understand and explain its development. These concepts do not necessarily exclude each other. The pathophysiology of endometriosis is likely to be multifactorial and to involve an interplay between several factors.

=Formation=

The main theories for the formation of the ectopic endometrium-like tissue include retrograde menstruation, Müllerianosis, coelomic metaplasia, vascular dissemination of stem cells, and surgical transplantation, which were postulated as early as 1870. Each is further described below.{{cite journal | vauthors = van der Linden PJ | title = Theories on the pathogenesis of endometriosis | journal = Human Reproduction | volume = 11 | issue = Suppl 3 | pages = 53–65 | date = November 1996 | pmid = 9147102 | doi = 10.1093/humrep/11.suppl_3.53 | doi-access = free | title-link = doi }}{{cite journal | vauthors = Hufnagel D, Li F, Cosar E, Krikun G, Taylor HS | title = The Role of Stem Cells in the Etiology and Pathophysiology of Endometriosis | journal = Seminars in Reproductive Medicine | volume = 33 | issue = 5 | pages = 333–40 | date = September 2015 | pmid = 26375413 | pmc = 4986990 | doi = 10.1055/s-0035-1564609 }}

==Retrograde menstruation theory==

The theory of retrograde menstruation (also called the implantation theory or transplantation theory) is the most commonly accepted theory for the dissemination and transformation of ectopic endometrium into endometriosis. It suggests that during a woman's menstrual flow, some of the endometrial debris flow backward through the fallopian tubes and into the peritoneal cavity, attaching itself to the peritoneal surface (the lining of the abdominal cavity) where it can proceed to invade the tissue as or transform into endometriosis. It is unclear at what stage the transformation of endometrium, or any cell of origin such as stem cells or coelomic cells (see those theories below), to endometriosis begins.{{cite journal | vauthors = Fauser BC, Diedrich K, Bouchard P, Domínguez F, Matzuk M, Franks S, Hamamah S, Simón C, Devroey P, Ezcurra D, Howles CM | title = Contemporary genetic technologies and female reproduction | journal = Human Reproduction Update | volume = 17 | issue = 6 | pages = 829–47 | year = 2011 | pmid = 21896560 | pmc = 3191938 | doi = 10.1093/humupd/dmr033 }}{{cite journal | vauthors = Koninckx PR, Barlow D, Kennedy S | title = Implantation versus infiltration: the Sampson versus the endometriotic disease theory | journal = Gynecologic and Obstetric Investigation | volume = 47 | issue = Supplement 1 | pages = 3–9; discussion 9–10 | date = 1999 | pmid = 10087422 | doi = 10.1159/000052853 | s2cid = 29718095 }}

Proofs in support of the theory are based on retrospective epidemiological studies that an association with endometrial implants attached to the peritoneal cavity, which would develop into endometrial lesions and retrograde menstruation; and the fact that animals like rodents and non-human primates whose endometrium is not shed during the estrous cycle don't develop naturally endometriosis contrary to animals that have a natural menstrual cycle like rhesus monkeys and baboons.{{cite journal | vauthors = Malvezzi H, Marengo EB, Podgaec S, Piccinato CA | title = Endometriosis: current challenges in modeling a multifactorial disease of unknown etiology | journal = Journal of Translational Medicine | volume = 18 | issue = 1 | page = 311 | date = August 2020 | pmid = 32787880 | pmc = 7425005 | doi = 10.1186/s12967-020-02471-0 | publisher = Springer Science and Business Media LLC | doi-access = free | title-link = doi }}

Retrograde menstruation alone is not able to explain all instances of endometriosis, and additional factors such as genetics, immunology, stem cell migration, and coelomic metaplasia (see "Other theories" on this page) are needed to account for disseminated disease and why many individuals with retrograde menstruation are not diagnosed with endometriosis. In addition, endometriosis has shown up in people who have never experienced menstruation including cisgender men,{{cite journal | vauthors = Pinkert TC, Catlow CE, Straus R | title = Endometriosis of the urinary bladder in a man with prostatic carcinoma | journal = Cancer | volume = 43 | issue = 4 | pages = 1562–7 | date = April 1979 | pmid = 445352 | doi = 10.1002/1097-0142(197904)43:4<1562::aid-cncr2820430451>3.0.co;2-w | doi-access = free | title-link = doi }} fetuses, and prepubescent girls.{{cite journal | vauthors = Mok-Lin EY, Wolfberg A, Hollinquist H, Laufer MR | title = Endometriosis in a patient with Mayer-Rokitansky-Küster-Hauser syndrome and complete uterine agenesis: evidence to support the theory of coelomic metaplasia | journal = Journal of Pediatric and Adolescent Gynecology | volume = 23 | issue = 1 | pages = e35-7 | date = February 2010 | pmid = 19589710 | doi = 10.1016/j.jpag.2009.02.010 }}{{cite journal | vauthors = Marsh EE, Laufer MR | title = Endometriosis in premenarcheal girls who do not have an associated obstructive anomaly | journal = Fertility and Sterility | volume = 83 | issue = 3 | pages = 758–60 | date = March 2005 | pmid = 15749511 | doi = 10.1016/j.fertnstert.2004.08.025 | doi-access = free | title-link = doi }} Further theoretical additions are needed to complement the retrograde menstruation theory to explain why cases of endometriosis show up in the brain{{cite journal | vauthors = Thibodeau LL, Prioleau GR, Manuelidis EE, Merino MJ, Heafner MD | title = Cerebral endometriosis. Case report | journal = Journal of Neurosurgery | volume = 66 | issue = 4 | pages = 609–10 | date = April 1987 | pmid = 3559727 | doi = 10.3171/jns.1987.66.4.0609 | doi-access = free | title-link = doi }} and lungs.{{cite journal | vauthors = Rodman MH, Jones CW | title = Catamenial hemoptysis due to bronchial endometriosis | journal = The New England Journal of Medicine | volume = 266 | issue = 16 | pages = 805–8 | date = April 1962 | pmid = 14493132 | doi = 10.1056/nejm196204192661604 }}

Researchers are investigating the possibility that the immune system may be unable to cope with the cyclic onslaught of retrograde menstrual fluid. In this context there is interest in studying the relationship of endometriosis to autoimmune disease, allergic reactions, and the impact of toxic materials.{{cite journal|author-link1=Norbert Gleicher | vauthors = Gleicher N, el-Roeiy A, Confino E, Friberg J | title = Is endometriosis an autoimmune disease? | journal = Obstetrics and Gynecology | volume = 70 | issue = 1 | pages = 115–22 | date = July 1987 | pmid = 3110710 }}{{cite journal | vauthors = Capellino S, Montagna P, Villaggio B, Sulli A, Soldano S, Ferrero S, Remorgida V, Cutolo M | title = Role of estrogens in inflammatory response: expression of estrogen receptors in peritoneal fluid macrophages from endometriosis | journal = Annals of the New York Academy of Sciences | volume = 1069 | pages = 263–7 | date = June 2006 | issue = 1 | pmid = 16855153 | doi = 10.1196/annals.1351.024 | bibcode = 2006NYASA1069..263C | s2cid = 35601442 }} It is still unclear what, if any, causal relationship exists between toxic materials or autoimmune disease and endometriosis. There are immune system changes in people with endometriosis, such as an increase in macrophage-derived secretion products, but it is unknown if these contribute to the disorder or are reactions to it.{{cite journal | vauthors = Young VJ, Brown JK, Saunders PT, Horne AW | title = The role of the peritoneum in the pathogenesis of endometriosis | journal = Human Reproduction Update | volume = 19 | issue = 5 | pages = 558–69 | year = 2013 | pmid = 23720497 | doi = 10.1093/humupd/dmt024 | doi-access = free | title-link = doi }}

Endometriotic lesions differ in their biochemistry, hormonal response, immunology, and inflammatory response compared to the endometrium.{{cite journal |vauthors=Redwine DB |title=Was Sampson wrong? |journal=Fertility and Sterility |volume=78 |issue=4 |pages=686–93 |date=October 2002 |pmid=12372441 |doi=10.1016/S0015-0282(02)03329-0 |doi-access=free |title-link=doi}} This is likely because the cells that give rise to endometriosis are a side population of cells. Similarly, there are changes in, for example, the mesothelium of the peritoneum in people with endometriosis, such as loss of tight junctions. It is unknown if these are causes or effects of the disorder.

In rare cases where imperforate hymen does not resolve itself before the first menstrual cycle and goes undetected, blood and endometrium are trapped within the uterus until the problem is resolved by surgical incision. Many health care practitioners never encounter this defect, and due to the flu-like symptoms, it is often misdiagnosed or overlooked until multiple menstrual cycles have passed. By the time a correct diagnosis has been made, endometrium and other fluids have filled the uterus and Fallopian tubes with results similar to retrograde menstruation, resulting in endometriosis. The initial stage of endometriosis may vary based on the time elapsed between onset and surgical procedure.{{citation needed|date=March 2016}}

The theory of retrograde menstruation as a cause of endometriosis was first proposed by John A. Sampson.{{cite journal |vauthors=Sampson JA |title=Metastatic or Embolic Endometriosis, due to the Menstrual Dissemination of Endometrial Tissue into the Venous Circulation |journal=Am. J. Pathol. |volume=3 |issue=2 |pages=93–110.43 |date=March 1927 |pmid=19969738 |pmc=1931779 }}

==Other theories==

  • Stem cells: Endometriosis may arise from stem cells from bone marrow and potentially other sources. In particular, this theory explains endometriosis found in areas remote from the pelvis, such as the brain or lungs. Stem cells may be from local cells such as the peritoneum (see coelomic metaplasia below) or cells disseminated in the bloodstream (see vascular dissemination below) such as those from the bone marrow.{{cite journal | vauthors = Sampson JA |year= 1927 |title= Peritoneal endometriosis due to the menstrual dissemination of endometrial tissue into the peritoneal cavity |journal= Am J Obstet Gynecol |volume= 14 |issue= 4 |pages= 422–469 |doi= 10.1016/S0002-9378(15)30003-X}}
  • Vascular dissemination: Vascular dissemination is a 1927 theory that has been revived with new studies of bone marrow stem cells involved in pathogenesis.
  • Environment: Environmental toxins (e.g., dioxin, nickel) may cause endometriosis.{{cite journal | vauthors = Bruner-Tran KL, Yeaman GR, Crispens MA, Igarashi TM, Osteen KG | title = Dioxin may promote inflammation-related development of endometriosis | journal = Fertility and Sterility | volume = 89 | issue = 5 Suppl | pages = 1287–98 | date = May 2008 | pmid = 18394613 | pmc = 2430157 | doi = 10.1016/j.fertnstert.2008.02.102 }}{{cite journal | vauthors = Yuk JS, Shin JS, Shin JY, Oh E, Kim H, Park WI | title = Nickel Allergy Is a Risk Factor for Endometriosis: An 11-Year Population-Based Nested Case-Control Study | journal = PLOS ONE | volume = 10 | issue = 10 | pages = e0139388 | date = 2015 | pmid = 26439741 | pmc = 4594920 | doi = 10.1371/journal.pone.0139388 | doi-access = free | title-link = doi | bibcode = 2015PLoSO..1039388Y }} Toxins such as dioxins and dioxin-like compounds tend to bioaccumulate within the human body. Further research is needed but "it is plausible that inflammatory-like processes, caused by dioxin-like environmental chemicals, can alter normal endometrial and immune cell physiology allowing persistence and development of endometrial tissue within the peritoneal cavity, normally cleared by immune system cells".{{cite journal | vauthors = Soave I, Caserta D, Wenger JM, Dessole S, Perino A, Marci R | title = Environment and Endometriosis: a toxic relationship | journal = European Review for Medical and Pharmacological Sciences | volume = 19 | issue = 11 | pages = 1964–72 | date = 2015 | pmid = 26125255 | url = https://pubmed.ncbi.nlm.nih.gov/26125255/ | archive-date = 21 July 2021 | access-date = 21 July 2021 | archive-url = https://web.archive.org/web/20210721001415/https://pubmed.ncbi.nlm.nih.gov/26125255/ | url-status = live }}
  • Müllerianosis: A theory supported by foetal autopsy is that cells with the potential to become endometrial, which are laid down in tracts during embryonic development called the female reproductive (Müllerian) tract as it migrates downward at 8–10 weeks of embryonic life, could become dislocated from the migrating uterus and act like seeds or stem cells.{{cite journal | vauthors = Signorile PG, Baldi F, Bussani R, D'Armiento M, De Falco M, Baldi A | title = Ectopic endometrium in human foetuses is a common event and sustains the theory of müllerianosis in the pathogenesis of endometriosis, a disease that predisposes to cancer | journal = Journal of Experimental & Clinical Cancer Research | volume = 28 | page = 49 | date = April 2009 | issue = 1 | pmid = 19358700 | pmc = 2671494 | doi = 10.1186/1756-9966-28-49 | doi-access = free | title-link = doi }}
  • Coelomic metaplasia: Coelomic cells which are the common ancestor of endometrial and peritoneal cells may undergo metaplasia (transformation) from one type of cell to the other, perhaps triggered by inflammation.{{cite journal | vauthors = Wellbery C | title = Diagnosis and treatment of endometriosis | journal = American Family Physician | volume = 60 | issue = 6 | pages = 1753–62, 1767–8 | date = October 1999 | pmid = 10537390 | url = http://www.aafp.org/afp/991015ap/1753.html | access-date = 26 July 2011 | publisher = American Academy of Family Physicians | url-status = live | archive-url = https://web.archive.org/web/20110606032508/http://www.aafp.org/afp/991015ap/1753.html | archive-date = 6 June 2011 }}
  • Vasculogenesis: Up to 37% of the microvascular endothelium of ectopic endometrial tissue originates from endothelial progenitor cells, which result in de novo formation of microvessels by the process of vasculogenesis rather than the conventional process of angiogenesis.{{cite journal | vauthors = Laschke MW, Giebels C, Menger MD | title = Vasculogenesis: a new piece of the endometriosis puzzle | journal = Human Reproduction Update | volume = 17 | issue = 5 | pages = 628–36 | year = 2011 | pmid = 21586449 | doi = 10.1093/humupd/dmr023 | doi-access = free | title-link = doi }}{{clarify|reason=what's the theory here? |date=March 2016}}
  • Neural growth: An increased expression of new nerve fibres is found in endometriosis, but does not fully explain the formation of ectopic endometriotic tissue and is not definitely correlated with the amount of perceived pain.{{cite journal | vauthors = Morotti M, Vincent K, Brawn J, Zondervan KT, Becker CM | title = Peripheral changes in endometriosis-associated pain | journal = Human Reproduction Update | volume = 20 | issue = 5 | pages = 717–36 | year = 2014 | pmid = 24859987 | pmc = 4337970 | doi = 10.1093/humupd/dmu021 }}{{clarify|reason=what's the theory here? |date=March 2016}}
  • Autoimmune: Graves disease is an autoimmune disease characterized by hyperthyroidism, goiter, ophthalmopathy, and dermopathy. People with endometriosis had higher rates of Graves' disease. One of these potential links between Graves disease and endometriosis is autoimmunity.{{cite journal | vauthors = Yuk JS, Park EJ, Seo YS, Kim HJ, Kwon SY, Park WI | title = Graves Disease Is Associated With Endometriosis: A 3-Year Population-Based Cross-Sectional Study | journal = Medicine | volume = 95 | issue = 10 | pages = e2975 | date = March 2016 | pmid = 26962803 | doi = 10.1097/MD.0000000000002975 | pmc = 4998884 }}{{cite journal | vauthors = Giudice LC, Kao LC | title = Endometriosis | journal = Lancet | volume = 364 | issue = 9447 | pages = 1789–99 | date = 2004 | pmid = 15541453 | doi = 10.1016/S0140-6736(04)17403-5 | s2cid = 208788714 }}
  • Oxidative stress: Influx of iron is associated with the local destruction of the peritoneal mesothelium, leading to the adhesion of ectopic endometriotic cells. Peritoneal iron overload has been suggested to be caused by the destruction of erythrocytes, which contain the iron-binding protein hemoglobin, or a deficiency in the peritoneal iron metabolism system.{{cite journal | vauthors = Scutiero G, Iannone P, Bernardi G, Bonaccorsi G, Spadaro S, Volta CA, Greco P, Nappi L | title = Oxidative Stress and Endometriosis: A Systematic Review of the Literature | journal = Oxidative Medicine and Cellular Longevity | volume = 2017 | page = 7265238 | date = 2017 | pmid = 29057034 | pmc = 5625949 | doi = 10.1155/2017/7265238 | doi-access = free | title-link = doi }} Oxidative stress activity and reactive oxygen species (ROS) (such as superoxide anions and peroxide levels) are reported to be higher than normal in people with endometriosis. Oxidative stress and the presence of excess ROS can damage tissue and induce rapid cellular division. Mechanistically, there are several cellular pathways by which oxidative stress may lead to or may induce proliferation of endometriotic lesions, including the mitogen activated protein (MAP) kinase pathway and the extracellular signal-related kinase (ERK) pathway. Activation of both of the MAP and ERK pathways lead to increased levels of c-Fos and c-Jun, which are proto-oncogenes that are associated with high-grade lesions.
  • Microbiome: Some studies have reported differences in gut microbial composition in individuals with endometriosis compared to healthy controls. These findings have led to suggestions that alterations in the gut microbiome may contribute to the pathophysiology of endometriosis, though further research is needed to clarify this relationship.{{Cite journal |last1=Torraco |first1=Astrid |last2=Di Nicolantonio |first2=Sara |last3=Cardisciani |first3=Martina |last4=Ortu |first4=Eleonora |last5=Pietropaoli |first5=Davide |last6=Altamura |first6=Serena |last7=Del Pinto |first7=Rita |date=2025-05-14 |title=Meta-Analysis of 16S rRNA Sequencing Reveals Altered Fecal but Not Vaginal Microbial Composition and Function in Women with Endometriosis |journal=Medicina |language=en |volume=61 |issue=5 |pages=888 |doi=10.3390/medicina61050888 |doi-access=free |issn=1648-9144|pmc=12112980 }}

=Localization=

Most often, endometriosis is found on the:

  • Ovaries
  • Fallopian tubes
  • Tissues that hold the uterus in place (ligaments)
  • Outer surface of the uterus

Less common pelvic sites are:

Rectovaginal or bowel endometriosis affects approximately 5-12% of those with endometriosis, and can cause severe pain with bowel movements.{{cite journal | vauthors = Weed JC, Ray JE | title = Endometriosis of the bowel | journal = Obstetrics and Gynecology | volume = 69 | issue = 5 | pages = 727–30 | date = May 1987 | pmid = 3574800 }}{{Citation needed|reason=correct information but dated 1987|date=November 2020}}

Deep infiltrating endometriosis (DIE) has been defined as the presence of endometrial glands and stroma infiltrating more than 5 mm in the subperitoneal tissue. The prevalence of DIE is estimated to be 1 to 2% in women of reproductive age. Deep endometriosis typically presents as a single nodule in the vesicouterine fold or the lower 20 cm of the bowel. Deep endometriosis can be associated with severe pain. However, it can be present without severe levels of pain.{{cite journal | vauthors = Van den Bosch T, Van Schoubroeck D | title = Ultrasound diagnosis of endometriosis and adenomyosis: State of the art | journal = Best Practice & Research. Clinical Obstetrics & Gynaecology | volume = 51 | pages = 16–24 | date = August 2018 | pmid = 29506961 | doi = 10.1016/j.bpobgyn.2018.01.013 | s2cid = 3759091 | url = https://lirias.kuleuven.be/handle/123456789/621035 | url-access = subscription }}

==Extrapelvic endometriosis==

Rarely, endometriosis appears in extrapelvic parts of the body, such as the lungs, brain, and skin.{{cite journal | vauthors = McCann MR, Schenk WB, Nassar A, Maimone S | title = Thoracic endometriosis presenting as a catamenial hemothorax with discordant video-assisted thoracoscopic surgery | journal = Radiology Case Reports | volume = 15 | issue = 9 | pages = 1419–1422 | date = September 2020 | pmid = 32642009 | pmc = 7334551 | doi = 10.1016/j.radcr.2020.05.064 }} Risk factors for scar endometriosis include previous abdominal surgeries, such as a hysterotomy or cesarean section, or ectopic pregnancies, salpingostomy puerperal sterilization, laparoscopy, amniocentesis, appendectomy, episiotomy, vaginal hysterectomies, and hernia repair.{{cite journal | vauthors = Dwivedi AJ, Agrawal SN, Silva YJ | title = Abdominal wall endometriomas | journal = Digestive Diseases and Sciences | volume = 47 | issue = 2 | pages = 456–461 | date = February 2002 | pmid = 11855568 | doi = 10.1023/a:1013711314870 | s2cid = 7362461 }}{{cite journal | vauthors = Kaunitz A, Di Sant'Agnese PA | title = Needle tract endometriosis: an unusual complication of amniocentesis | journal = Obstetrics and Gynecology | volume = 54 | issue = 6 | pages = 753–755 | date = December 1979 | pmid = 160025 }}{{cite journal | vauthors = Koger KE, Shatney CH, Hodge K, McClenathan JH | title = Surgical scar endometrioma | journal = Surgery, Gynecology & Obstetrics | volume = 177 | issue = 3 | pages = 243–246 | date = September 1993 | pmid = 8356497 }}

Less commonly, lesions can be found on the diaphragm or lungs. Diaphragmatic endometriosis is rare, almost always on the right hemidiaphragm, and may cause the cyclic pain of the right scapula (shoulder) or cervical area (neck) during a menstrual period.{{cite journal | vauthors = Andres MP, Arcoverde FV, Souza CC, Fernandes LF, Abrão MS, Kho RM | title = Extrapelvic Endometriosis: A Systematic Review | journal = Journal of Minimally Invasive Gynecology | volume = 27 | issue = 2 | pages = 373–389 | date = February 2020 | pmid = 31618674 | doi = 10.1016/j.jmig.2019.10.004 | title-link = doi | doi-access = free }} Pulmonary endometriosis can be associated with a thoracic endometriosis syndrome that can include catamenial (occurs during menstruation) pneumothorax seen in 73% of women with the syndrome, catamenial hemothorax in 14%, catamenial hemoptysis in 7%, and pulmonary nodules in 6%.

Diagnosis

A health history and a physical examination can lead the health care practitioner to suspect endometriosis. There is a clear benefit for performing a transvaginal ultrasound (TVUS) as a first step of testing for endometriosis.

Definitive diagnosis is based on the morphology (form and structure) of the pelvic region, determined by observation (surgical or non-invasive imaging), and classified into four different stages of endometriosis. The American Society of Reproductive Medicine's scale, revised in 1996, gives higher scores to deep, thick lesions or intrusions on the ovaries and dense, enveloping adhesions on the ovaries or fallopian tubes. Additionally, histological studies, when performed, should show specific findings.

For many patients, there are significant delays in diagnosis. Studies show an average delay of 11.7 years in the United States. Patients in the UK have an average delay of 8 years and in Norway of 6.7 years.{{cite journal | vauthors = Pugsley Z, Ballard K | title = Management of endometriosis in general practice: the pathway to diagnosis | journal = The British Journal of General Practice | volume = 57 | issue = 539 | pages = 470–6 | date = June 2007 | pmid = 17550672 | pmc = 2078174 }} A third of women had consulted their GP six or more times before being diagnosed.

The most common sites of endometriosis are the ovaries, followed by the Douglas pouch, the posterior leaves of the broad ligaments, and the sacrouterine ligaments.

As for deep infiltrating endometriosis, TVUS, TRUS and MRI are the techniques of choice for non-invasive diagnosis with a high sensitivity and specificity.{{cite journal | vauthors = Zhang X, He T, Shen W | title = Comparison of physical examination, ultrasound techniques and magnetic resonance imaging for the diagnosis of deep infiltrating endometriosis: A systematic review and meta-analysis of diagnostic accuracy studies | journal = Experimental and Therapeutic Medicine | volume = 20 | issue = 4 | pages = 3208–3220 | date = October 2020 | pmid = 32855690 | pmc = 7444323 | doi = 10.3892/etm.2020.9043 | publisher = Spandidos Publications }}

=Laparoscopy=

File:Endometrioma.jpg showing a 67 x 40 mm endometrioma as distinguished from other types of ovarian cysts by a somewhat grainy and not completely anechoic content]]

Laparoscopy, a surgical procedure where a camera is used to look inside the abdominal cavity, is the only way to accurately diagnose the extent and severity of pelvic/abdominal endometriosis.{{cite journal | vauthors = Nisenblat V, Bossuyt PM, Farquhar C, Johnson N, Hull ML | title = Imaging modalities for the non-invasive diagnosis of endometriosis | journal = The Cochrane Database of Systematic Reviews | volume = 2016 | pages = CD009591 | date = February 2016 | issue = 2 | pmid = 26919512 | doi = 10.1002/14651858.cd009591.pub2 | pmc = 7100540 }} Laparoscopy is not an applicable test for extrapelvic sites such as umbilicus, hernia sacs, abdominal wall, lung, or kidneys.

Reviews in 2019 and 2020 concluded that 1) with advances in imaging, endometriosis diagnosis should no longer be considered synonymous with immediate laparoscopy for diagnosis, and 2) endometriosis should be classified as a syndrome that requires confirmation of visible lesions seen at laparoscopy in addition to characteristic symptoms.{{cite journal |vauthors=Chapron C, Marcellin L, Borghese B, Santulli P |title=Rethinking mechanisms, diagnosis and management of endometriosis |journal=Nat Rev Endocrinol |volume=15 |issue=11 |pages=666–682 |date=November 2019 |pmid=31488888 |doi=10.1038/s41574-019-0245-z |s2cid=201838966 }}{{cite web |url=https://blogs.bmj.com/bmj/2020/08/11/reclassifying-endometriosis-as-a-syndrome-would-benefit-patient-care/ |title=Reclassifying endometriosis as a syndrome would benefit patient care - The BMJ |date=11 August 2020 |access-date=17 August 2020 |archive-date=13 August 2020 |archive-url=https://web.archive.org/web/20200813021150/https://blogs.bmj.com/bmj/2020/08/11/reclassifying-endometriosis-as-a-syndrome-would-benefit-patient-care/ |url-status=live }}

Laparoscopy permits lesion visualization unless the lesion is visible externally (e.g., an endometriotic nodule in the vagina) or is extra-abdominal. If the growths (lesions) are not visible, a biopsy must be taken to determine the diagnosis. Surgery for diagnoses also allows for surgical treatment of endometriosis at the same time.

During a laparoscopic procedure, lesions can appear dark blue, powder-burn black, red, white, yellow, brown, or non-pigmented. Lesions vary in size. Some within the pelvic walls may not be visible, as the normal-appearing peritoneum of infertile women reveals endometriosis on biopsy in 6–13% of cases.{{cite journal | vauthors = Nisolle M, Paindaveine B, Bourdon A, Berlière M, Casanas-Roux F, Donnez J | title = Histologic study of peritoneal endometriosis in infertile women | journal = Fertility and Sterility | volume = 53 | issue = 6 | pages = 984–8 | date = June 1990 | pmid = 2351237 | doi = 10.1016/s0015-0282(16)53571-7 | doi-access = free | title-link = doi }} Early endometriosis typically occurs on the surfaces of organs in the pelvic and intra-abdominal areas.{{cite journal |vauthors=Hsu AL, Khachikyan I, Stratton P |title=Invasive and noninvasive methods for the diagnosis of endometriosis |journal=Clin Obstet Gynecol |volume=53 |issue=2 |pages=413–9 |date=June 2010 |pmid=20436318 |pmc=2880548 |doi=10.1097/GRF.0b013e3181db7ce8 }} Health care providers may call areas of endometriosis by different names, such as implants, lesions, or nodules. Larger lesions may be seen within the ovaries as endometriomas or "chocolate cysts"; "chocolate" because they contain a thick brownish fluid, mostly old blood.

Frequently, during diagnostic laparoscopy, no lesions are found in individuals with chronic pelvic pain, a symptom common to other disorders including adenomyosis, pelvic adhesions, pelvic inflammatory disease, congenital anomalies of the reproductive tract, and ovarian or tubal masses.{{cite journal |title=Treatment of pelvic pain associated with endometriosis: a committee opinion |journal=Fertility and Sterility |volume=101 |issue=4 |pages=927–35 |date=April 2014 |pmid=24630080 |doi=10.1016/j.fertnstert.2014.02.012 |author1=Practice Committee of the American Society for Reproductive Medicine |doi-access=free |title-link=doi}}

= Ultrasound =

Vaginal ultrasound can be used to diagnosis endometriosis, or for localizing endometrioma before surgery.{{cite web|url=https://www.sbu.se/en/publications/sbu-assesses/endometriosis--diagnosis-treatment-and-patient-experiences/|title=Endometriosis – Diagnosis, treatment and patient experiences|date=4 May 2018|publisher=Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU)|access-date=13 June 2018|archive-date=19 January 2021|archive-url=https://web.archive.org/web/20210119024015/https://www.sbu.se/en/publications/sbu-assesses/endometriosis--diagnosis-treatment-and-patient-experiences/|url-status=live}} This can be used to identify the spread of disease in individuals with well-established clinical suspicion of endometriosis. Vaginal ultrasound is inexpensive, easily accessible, has no contraindications and requires no preparation. By extending the ultrasound assessment into the posterior and anterior pelvic compartments a sonographer can evaluate structural mobility and look for deep infiltrating endometriotic nodules.{{cite journal |vauthors=Fang J, Piessens S |title=A step-by-step guide to sonographic evaluation of deep infiltrating endometriosis |journal=Sonography |date=June 2018 |volume=5 |issue=2 |pages=67–75 |doi=10.1002/sono.12149 |doi-access=free |title-link=doi}} Better sonographic detection of deep infiltrating endometriosis could reduce the number of diagnostic laparoscopies, as well as guide disease management and enhance patient quality of life.

= Magnetic resonance imaging =

MRI is another means of detecting lesions in a non-invasive manner. MRI is not widely used due to its cost and limited availability, although it can be used to detect the most common form of endometriosis (endometrioma) with sufficient accuracy. A 2020 article recommended administering an anti-spasmodic agent (i.e., hyoscine butylbromide) and a big glass of water (if the bladder is empty) and scanning in the supine position with an abdominal strap for better image quality.{{cite journal |vauthors=Wild M, Pandhi S, Rendle J, Swift I, Ofuasia E |title=MRI for the diagnosis and staging of deeply infiltrating endometriosis: a national survey of BSGE accredited endometriosis centres and review of the literature |journal=Br J Radiol |volume=93 |issue=1114 |page=20200690 |date=October 2020 |pmid=32706984 |doi=10.1259/bjr.20200690 |pmc=7548358 }} It also recommended using pelvic-phased array coils and T1 (spin-lattice) weighted scanning, with and without suppression of fat for endometriomas, and sagittal, axial and oblique 2D T2 (spin-spin) weighting for deep infiltrating endometriosis. {{See also|MRI sequence}}

=Stages of disease=

By surgical observation, endometriosis can be classified as stage I–IV by the 1996 scale of the American Society of Reproductive Medicine (ASRM).{{cite journal | title = Revised American Society for Reproductive Medicine classification of endometriosis: 1996 | journal = Fertility and Sterility | volume = 67 | issue = 5 | pages = 817–21 | date = May 1997 | pmid = 9130884 | doi = 10.1016/S0015-0282(97)81391-X | last1 = American Society For Reproductive | doi-access = free | title-link = doi }} The scale uses a point system that assesses lesions and adhesions in the pelvic organs. It is important to note that staging assesses physical disease only, not the level of pain or infertility.{{cite journal | vauthors = Vercellini P, Fedele L, Aimi G, Pietropaolo G, Consonni D, Crosignani PG | title = Association between endometriosis stage, lesion type, patient characteristics and severity of pelvic pain symptoms: a multivariate analysis of over 1000 patients | journal = Human Reproduction | volume = 22 | issue = 1 | pages = 266–71 | date = January 2007 | pmid = 16936305 | doi = 10.1093/humrep/del339 | doi-access = free | title-link = doi }} A person with Stage I endometriosis may have a little disease and severe pain, while a person with Stage IV endometriosis may have severe disease and no pain or vice versa. The various stages are summarized by:

Stage I (Minimal)

: Findings restricted to only superficial lesions and possibly a few filmy adhesions.

Stage II (Mild)

: In addition, some deep lesions are present in the cul-de-sac.

Stage III (Moderate)

: As above, plus the presence of endometriomas on the ovary and more adhesions.

Stage IV (Severe)

: As above, plus large endometriomas and extensive adhesions. Implants and adhesions may be found beyond the uterus. Large ovarian cysts are common.

=Markers=

An area of research is the search for endometriosis markers.

In 2010, essentially all proposed biomarkers for endometriosis were of unclear medical use, although some appear to be promising.{{cite journal | vauthors = May KE, Conduit-Hulbert SA, Villar J, Kirtley S, Kennedy SH, Becker CM | title = Peripheral biomarkers of endometriosis: a systematic review | journal = Human Reproduction Update | volume = 16 | issue = 6 | pages = 651–74 | year = 2010 | pmid = 20462942 | pmc = 2953938 | doi = 10.1093/humupd/dmq009 }} The one biomarker that has been in use over the last 20 years is CA-125. A 2016 review found that this biomarker was present in those with symptoms of endometriosis; and, once ovarian cancer has been ruled out, a positive CA-125 may confirm the diagnosis.{{cite journal | vauthors = Hirsch M, Duffy J, Davis CJ, Nieves Plana M, Khan KS | title = Diagnostic accuracy of cancer antigen 125 for endometriosis: a systematic review and meta-analysis | journal = BJOG | volume = 123 | issue = 11 | pages = 1761–8 | date = October 2016 | pmid = 27173590 | doi = 10.1111/1471-0528.14055 | s2cid = 22744182 | url = https://ora.ox.ac.uk/objects/uuid:d413105f-9fa2-43c8-9ee8-438c77725589 | archive-date = 26 April 2022 | access-date = 29 September 2020 | archive-url = https://web.archive.org/web/20220426034925/https://ora.ox.ac.uk/objects/uuid:d413105f-9fa2-43c8-9ee8-438c77725589 | url-status = live }} Its performance in ruling out endometriosis is low. CA-125 levels appear to fall during endometriosis treatment, but it has not shown a correlation with disease response.

Another review in 2011 identified several putative biomarkers upon biopsy, including findings of small sensory nerve fibers or defectively expressed β3 integrin subunit.{{cite journal | vauthors = May KE, Villar J, Kirtley S, Kennedy SH, Becker CM | title = Endometrial alterations in endometriosis: a systematic review of putative biomarkers | journal = Human Reproduction Update | volume = 17 | issue = 5 | pages = 637–53 | year = 2011 | pmid = 21672902 | doi = 10.1093/humupd/dmr013 | doi-access = free | title-link = doi }} It has been postulated a future diagnostic tool for endometriosis will consist of a panel of several specific and sensitive biomarkers, including both substance concentrations and genetic predisposition.

A 2016 review of endometrial biomarkers for diagnosing endometriosis was unable to draw conclusions due to the low quality of the evidence.{{cite journal | vauthors = Gupta D, Hull ML, Fraser I, Miller L, Bossuyt PM, Johnson N, Nisenblat V | title = Endometrial biomarkers for the non-invasive diagnosis of endometriosis | journal = The Cochrane Database of Systematic Reviews | volume = 2016 | pages = CD012165 | date = April 2016 | issue = 4 | pmid = 27094925 | pmc = 6953323 | doi = 10.1002/14651858.CD012165 }}

MicroRNAs have the potential to be used in diagnostic and therapeutic decisions.{{cite journal |vauthors=Taghavipour M, Sadoughi F, Mirzaei H, Yousefi B, Moazzami B, Chaichian S, Mansournia MA, Asemi Z |title=Apoptotic functions of microRNAs in pathogenesis, diagnosis, and treatment of endometriosis |date=2020 |journal=Cell & Bioscience |pmid=32082539 |doi=10.1186/s13578-020-0381-0 |volume=10 |pmc=7014775 |page=12 |doi-access = free | title-link = doi }}

=Histopathology=

For a histopathological diagnosis, at least two of the following three criteria should be present:{{cite web | vauthors = Han L, Garcia R, Busca A, Parra-Herran C | date = November 2023 | veditors = Turashvili G, Skala SL | url = http://www.pathologyoutlines.com/topic/ovarynontumorendometriosis.html | title = Ovary - nontumor - Nonneoplastic cysts / other - Endometriosis | website = Pathology Outlines | access-date = 18 March 2020 | archive-date = 7 August 2020 | archive-url = https://web.archive.org/web/20200807014147/http://www.pathologyoutlines.com/topic/ovarynontumorendometriosis.html | url-status = live }}

Immunohistochemistry is useful in diagnosing endometriosis as stromal cells have a peculiar surface antigen, CD10, thus allowing the pathologist go straight to a staining area and confirm the presence of stromal cells and sometimes glandular tissue is identified that was missed on routine H&E staining.{{cite conference | vauthors = McMaster-Fay R, Osborn R, Chandraratnam E | title = The Clinical Utility Of CD10 Immunohistochemical Staining In The Diagnosis Of Endometriosis. | conference = 10th World Congress of Endometriosis | location = Melbourne, Australia. | url = http://www.rfay.com.au/docs/cd10poster.pdf |access-date=18 July 2013 |url-status=live |archive-url=https://web.archive.org/web/20130502131226/http://rfay.com.au/docs/cd10poster.pdf |archive-date=2 May 2013 }}

File:Endometriosis, abdominal wall.jpg|Endometriosis, abdominal wall

File:Endometriosis of the ovary.jpg|Micrograph showing endometriosis (right) and ovarian stroma (left)

File:Endometrioma1.jpg|Micrograph of the wall of an endometrioma. All features of endometriosis are present (endometrial glands, endometrial stroma and hemosiderin-laden macrophages).

=Pain quantification=

The most common pain scale for quantification of endometriosis-related pain is the visual analogue scale (VAS); VAS and numerical rating scale (NRS) were the best adapted pain scales for pain measurement in endometriosis. For research purposes, and more detailed pain measurement in clinical practice, VAS or NRS for each type of typical pain related to endometriosis (dysmenorrhea, deep dyspareunia and non-menstrual chronic pelvic pain), combined with the clinical global impression (CGI) and a quality of life scale, are used.{{cite journal | vauthors = Bourdel N, Alves J, Pickering G, Ramilo I, Roman H, Canis M | title = Systematic review of endometriosis pain assessment: how to choose a scale? | journal = Human Reproduction Update | volume = 21 | issue = 1 | pages = 136–52 | year = 2014 | pmid = 25180023 | doi = 10.1093/humupd/dmu046 | doi-access = free | title-link = doi }}

Prevention

Limited evidence indicates that the use of combined oral contraceptives is associated with a reduced risk of endometriosis, as is regular exercise and the avoidance of alcohol and caffeine. There is little known information on preventing endometriosis.{{cite web |title=Endometriosis |url=https://www.who.int/news-room/fact-sheets/detail/endometriosis |access-date=24 November 2023 |website=www.who.int |language=en |archive-date=4 December 2023 |archive-url=https://web.archive.org/web/20231204160817/https://www.who.int/news-room/fact-sheets/detail/endometriosis |url-status=live }}

Management

While there is no cure for endometriosis, there are treatments for pain and endometriosis-associated infertility.{{cite web | title =What are the treatments for endometriosis | publisher =Eunice Kennedy Shriver National Institute of Child Health and Human Development | url =http://www.nichd.nih.gov/health/topics/endometri/conditioninfo/Pages/treatment.aspx | access-date =20 August 2013 | url-status =live | archive-url =https://web.archive.org/web/20130803030403/http://www.nichd.nih.gov/health/topics/endometri/conditioninfo/Pages/treatment.aspx | archive-date =3 August 2013 }} Pain can be treated with hormones, painkillers, or, in severe cases, surgery.{{Cite web |date=2020-02-21 |title=What are the treatments for endometriosis? |url=https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/treatment |access-date=2025-01-12 |website=NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development |language=en}}

In most cases, the symptoms disappear or improve with menopause (natural or surgical).{{cite journal | vauthors = Moen MH, Rees M, Brincat M, Erel T, Gambacciani M, Lambrinoudaki I, Schenck-Gustafsson K, Tremollieres F, Vujovic S, Rozenberg S | title = EMAS position statement: Managing the menopause in women with a past history of endometriosis | journal = Maturitas | volume = 67 | issue = 1 | pages = 94–7 | date = September 2010 | pmid = 20627430 | doi = 10.1016/j.maturitas.2010.04.018 | doi-access = free | title-link = doi }} In the reproductive years, endometriosis is merely managed: the goal is to provide pain relief, to restrict the progression of the process, and to restore or preserve fertility where needed. In younger individuals, some surgical treatments attempt to remove endometriotic tissue and preserve the ovaries without damaging normal tissue.{{cite journal |vauthors=Wellbery C |title=Diagnosis and treatment of endometriosis |journal=American Family Physician |volume=60 |issue=6 |pages=1753–62, 1767–8 |date=October 1999 |pmid=10537390 |url=http://www.aafp.org/afp/1999/1015/p1753.html |archive-url = https://web.archive.org/web/20131029215107/http://www.aafp.org/afp/1999/1015/p1753.html |url-status=live |archive-date=29 October 2013}}

Pharmacotherapy for pain management can be initiated based on the presence of symptoms, examination, and ultrasound findings that rule out other potential causes.{{cite web | title=Update on pharmacologic treatment for endometriosis- related pain | website=Women's Healthcare | date=7 June 2020 | url=https://www.npwomenshealthcare.com/update-on-pharmacologic-treatment-for-endometriosis-related-pain/ | access-date=3 October 2021 | archive-date=3 October 2021 | archive-url=https://web.archive.org/web/20211003205203/https://www.npwomenshealthcare.com/update-on-pharmacologic-treatment-for-endometriosis-related-pain/ | url-status=live }}

In general, the diagnosis of endometriosis is confirmed during surgery, at which time removal can be performed. Further steps depend on circumstances: someone without infertility can manage symptoms with pain medication and hormonal medication that suppresses the natural cycle, while an infertile individual may be treated expectantly after surgery, with fertility medication, or with in vitro fertilisation (IVF).

A 2020 Cochrane systematic review found that for all types of endometriosis, "it is uncertain whether laparoscopic surgery improves overall pain compared to diagnostic laparoscopy".{{cite journal |vauthors=Bafort C, Beebeejaun Y, Tomassetti C, Bosteels J, Duffy JM |title=Laparoscopic surgery for endometriosis |journal=The Cochrane Database of Systematic Reviews |volume=2020 |issue=10 |pages=CD011031 |date=October 2020 |pmid=33095458 |doi=10.1002/14651858.cd011031.pub3 |publisher=Wiley |pmc=8428328}}

=Surgery=

{{See also|Endometrioma#Surgery}}

Based on strong evidence, experts recommend that surgery be performed laparoscopically (through keyhole surgery) rather than open.{{cite journal |vauthors=Johnson NP, Hummelshoj L |title=Consensus on current management of endometriosis |journal=Human Reproduction |volume=28 |issue=6 |pages=1552–68 |date=June 2013 |pmid=23528916 |doi=10.1093/humrep/det050 |doi-access=free |title-link=doi}} Treatment consists of the ablation or excision of the endometriosis, electrocoagulation, lysis of adhesions, resection of endometriomas, and restoration of normal pelvic anatomy as much as is possible.{{cite book|vauthors=Speroff L, Glass RH, Kase NG |title=Clinical Gynecologic Endocrinology and Infertility |publisher=Lippincott Willimas Wilkins |edition=6th |page=1057 |isbn=0-683-30379-1 |year=1999}} When laparoscopic surgery is used, small instruments are inserted through the incisions to remove the endometriosis tissue and adhesions. Because the incisions are tiny, there will only be small scars on the skin after the procedure, and most individuals recover from surgery quickly and have a reduced risk of adhesions.{{cite web |title=Endometriosis and Infertility: Can Surgery Help? |year=2008 |publisher=American Society for Reproductive Medicine |url=http://www.asrm.org/uploadedFiles/ASRM_Content/Resources/Patient_Resources/Fact_Sheets_and_Info_Booklets/endometriosis_infertility.pdf |access-date=31 October 2010 |url-status=live |archive-url=https://web.archive.org/web/20101011155943/http://www.asrm.org/uploadedFiles/ASRM_Content/Resources/Patient_Resources/Fact_Sheets_and_Info_Booklets/endometriosis_infertility.pdf |archive-date=11 October 2010}} Many endometriosis specialists believe that excision is the ideal surgical method to treat endometriosis.{{cite web |title=UNC Center for Endometriosis |url=https://www.med.unc.edu/obgyn/migs/our-services/unc-center-for-endometriosis/ |access-date=14 July 2021 |website=UNC Department of Obstetrics & Gynecology |archive-date=14 July 2021 |archive-url=https://web.archive.org/web/20210714043254/https://www.med.unc.edu/obgyn/migs/our-services/unc-center-for-endometriosis/ |url-status=dead }} A 2017 literature review found that excision improved some outcomes over ablation.{{cite journal|pmid=28456617 |date=2017 |vauthors=Pundir J, Omanwa K, Kovoor E, Pundir V, Lancaster G, Barton-Smith P |title=Laparoscopic Excision Versus Ablation for Endometriosis-associated Pain: An Updated Systematic Review and Meta-analysis |journal=Journal of Minimally Invasive Gynecology |volume=24 |issue=5 |pages=747–756 |doi=10.1016/j.jmig.2017.04.008}} In the United States, some specialists trained in excision for endometriosis do not accept health insurance because insurance companies do not reimburse the higher costs of this procedure over ablation.{{cite news |vauthors=Muraskin A |title=Endometriosis, a painful and often overlooked disease, gets attention in a new film |publisher=NPR |date=16 July 2023 |url=https://www.npr.org/sections/health-shots/2023/07/16/1186533247/endometriosis-a-painful-and-often-overlooked-disease-gets-attention-in-a-new-fil |archive-date=17 July 2023 |access-date=17 July 2023 |archive-url=https://web.archive.org/web/20230717173453/https://www.npr.org/sections/health-shots/2023/07/16/1186533247/endometriosis-a-painful-and-often-overlooked-disease-gets-attention-in-a-new-fil |url-status=live }}

As for deep endometriosis, a segmental resection or shaving of nodules is effective but is associated with an increased rate of complications, of which about 4.6% are major.{{cite journal | vauthors = Dunselman GA, Vermeulen N, Becker C, Calhaz-Jorge C, D'Hooghe T, De Bie B, Heikinheimo O, Horne AW, Kiesel L, Nap A, Prentice A, Saridogan E, Soriano D, Nelen W | title = ESHRE guideline: management of women with endometriosis | journal = Human Reproduction | volume = 29 | issue = 3 | pages = 400–12 | date = March 2014 | pmid = 24435778 | doi = 10.1093/humrep/det457 | publisher = Oxford University Press (OUP) | doi-access = free | title-link = doi }}

Historically, a hysterectomy (removal of the uterus) was thought to be a cure for endometriosis in individuals who do not wish to conceive. Removal of the uterus may be beneficial as part of the treatment if the uterus itself is affected by adenomyosis. However, this should only be done in combination with the removal of the endometriosis by excision. If endometriosis is not also removed at the time of hysterectomy, pain may persist. A study of hysterectomy patients found that those with endometriosis did not use less pain medication three years after the procedure.Brunes, M, Altman, D, Pålsson, M, Söderberg, MW, Ek, M. Impact of hysterectomy on analgesic, psychoactive and neuroactive drug use in women with endometriosis: nationwide cohort study. BJOG 2021; 128: 846– 855. [https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.16469] {{Webarchive|url=https://web.archive.org/web/20230717173454/https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.16469|date=17 July 2023}}

Presacral neurectomy may be performed where the nerves to the uterus are cut. However, this technique is not usually used due to the high incidence of associated complications, including presacral hematoma and irreversible problems with urination and constipation.

==Recurrence==

The underlying process that causes endometriosis may not cease after a surgical or medical intervention. Even though surgery can improve symptoms, the resurgence of pain is common.{{Cite journal |date=2024-12-04 |title=Endometriosis, fibroids and heavy periods: long-term research supports treatment decisions |url=https://evidence.nihr.ac.uk/collection/endometriosis-fibroids-and-heavy-periods-long-term-research-supports-treatment-decisions/ |journal=NIHR Evidence |publisher=National Institute for Health and Care Research |doi=10.3310/nihrevidence_64953|doi-access=free }} A study has shown that dysmenorrhea recurs at a rate of 30 percent within a year following laparoscopic surgery. Resurgence of lesions tends to appear in the same location if the lesions were not completely removed during surgery. It has been shown that laser ablation resulted in higher and earlier recurrence rates when compared with endometrioma cystectomy, and recurrence after repetitive laparoscopy was similar to that after the first surgery. Endometriosis has a 10% recurrence rate after hysterectomy and bilateral salpingo-oophorectomy.{{cite journal | vauthors = Selçuk İ, Bozdağ G | title = Recurrence of endometriosis; risk factors, mechanisms and biomarkers; review of the literature| journal = J Turk Ger Gynecol Assoc| date = 2013 | volume = 14| issue = 2| pages = 98–103| doi = 10.5152/jtgga.2013.52385| pmid = 24592083 | pmc = 3881735}}

Endometriosis recurrence following conservative surgery is estimated as 21.5% at 2 years and 40–50% at 5 years.{{cite journal | vauthors = Guo SW | title = Recurrence of endometriosis and its control | journal = Human Reproduction Update | volume = 15 | issue = 4 | pages = 441–61 | year = 2009 | pmid = 19279046 | doi = 10.1093/humupd/dmp007 | doi-access = free | title-link = doi }}

The recurrence rate for DIE after surgery is less than 1%.{{cite journal | vauthors = Koninckx PR, Ussia A, Keckstein J, Adamyan LV, Zupi E, Wattiez A, Gomel V | title = Evidence-Based Medicine: Pandora's Box of Medical and Surgical Treatment of Endometriosis | journal = Journal of Minimally Invasive Gynecology | volume = 25 | issue = 3 | pages = 360–365 | year = 2018 | pmid = 29180308 | doi = 10.1016/j.jmig.2017.11.012 | publisher = Elsevier BV }}

==Risks and safety of pelvic surgery==

The risk of developing complications following surgery depends on the type of lesion that has undergone surgery.{{cite journal | vauthors = Vercellini P, Viganò P, Somigliana E, Fedele L | title = Endometriosis: pathogenesis and treatment | journal = Nature Reviews. Endocrinology | volume = 10 | issue = 5 | pages = 261–75 | date = May 2014 | pmid = 24366116 | doi = 10.1038/nrendo.2013.255 | publisher = Springer Science and Business Media LLC | s2cid = 13050344 }} 55% to 100% of individuals develop adhesions following pelvic surgery,{{cite journal | vauthors = Liakakos T, Thomakos N, Fine PM, Dervenis C, Young RL | title = Peritoneal adhesions: etiology, pathophysiology, and clinical significance. Recent advances in prevention and management | journal = Digestive Surgery | volume = 18 | issue = 4 | pages = 260–73 | year = 2001 | pmid = 11528133 | doi = 10.1159/000050149 | s2cid = 30816909 }} which can result in infertility, chronic abdominal and pelvic pain, and difficult reoperative surgery. Trehan's temporary ovarian suspension, a technique in which the ovaries are suspended for a week after surgery, may be used to reduce the incidence of adhesions after endometriosis surgery.{{cite journal | vauthors = Trehan AK | title = Temporary ovarian suspension | journal = Gynaecological Endoscopy | volume = 11 | pages = 309–314 | year = 2002 | doi=10.1046/j.1365-2508.2002.00520.x | issue=1}}{{cite journal | vauthors = Abuzeid MI, Ashraf M, Shamma FN | title = Temporary ovarian suspension at laparoscopy for prevention of adhesions | journal = The Journal of the American Association of Gynecologic Laparoscopists | volume = 9 | issue = 1 | pages = 98–102 | date = February 2002 | pmid = 11821616 | doi = 10.1016/S1074-3804(05)60114-4 }} Removal of cysts on the ovary without removing the ovary is a safe procedure.

=Hormonal medications=

{{See also|High-dose estrogen}}

  • Hormonal birth control therapy: Birth control pills reduce the menstrual pain and recurrence rate for endometrioma following conservative surgery for endometriosis.{{cite journal | vauthors = Zorbas KA, Economopoulos KP, Vlahos NF | title = Continuous versus cyclic oral contraceptives for the treatment of endometriosis: a systematic review | journal = Archives of Gynecology and Obstetrics | volume = 292 | issue = 1 | pages = 37–43 | date = July 2015 | pmid = 25644508 | doi = 10.1007/s00404-015-3641-1 | s2cid = 23340983 }} A 2018 Cochrane systematic review found that there is insufficient evidence to make a judgement on the effectiveness of the combined oral contraceptive pill compared with placebo or other medical treatment for managing pain associated with endometriosis partly because of lack of included studies for data analysis (only two for COCP vs placebo).{{cite journal | vauthors = Brown J, Crawford TJ, Datta S, Prentice A | title = Oral contraceptives for pain associated with endometriosis | journal = The Cochrane Database of Systematic Reviews | volume = 2018 | issue = 5 | pages = CD001019 | date = May 2018 | pmid = 29786828 | pmc = 6494634 | doi = 10.1002/14651858.cd001019.pub3 | publisher = Wiley }}
  • Progestogens: Progesterone counteracts estrogen and inhibits the growth of the endometrium.{{cite journal | vauthors = Patel B, Elguero S, Thakore S, Dahoud W, Bedaiwy M, Mesiano S | title = Role of nuclear progesterone receptor isoforms in uterine pathophysiology | journal = Human Reproduction Update | volume = 21 | issue = 2 | pages = 155–73 | year = 2014 | pmid = 25406186 | pmc = 4366574 | doi = 10.1093/humupd/dmu056 }} Danazol and gestrinone are suppressive steroids with some androgenic activity. Both agents inhibit the growth of endometriosis but their use has declined, due in part to virilizing side effects such as excessive hair growth and voice changes.{{cite web|url=https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/017557s033s039s040s041s042lbl.pdf|title=DANOCRINE : Brand of DANAZOL CAPSULES, USP|website=Accessdata.fda.gov|access-date=3 March 2022|archive-date=2 April 2021|archive-url=https://web.archive.org/web/20210402121305/https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/017557s033s039s040s041s042lbl.pdf|url-status=dead}} There is tentative evidence based on cohort studies that dienogest and norethisterone acetate (NETA) may help patients with DIE in terms of pain.{{cite journal | vauthors = D'Alterio MN, D'Ancona G, Raslan M, Tinelli R, Daniilidis A, Angioni S | title = Management Challenges of Deep Infiltrating Endometriosis | journal = International Journal of Fertility & Sterility | volume = 15 | issue = 2 | pages = 88–94 | date = April 2021 | pmid = 33687160 | pmc = 8052801 | doi = 10.22074/IJFS.2020.134689 }} There is tentative evidence based on a prospective study that vaginal danazol reduces pain in those affected by DIE.
  • Gonadotropin-releasing hormone (GnRH) modulators: These drugs include GnRH agonists such as leuprorelin, and GnRH antagonists such as elagolix and are thought to work by decreasing estrogen levels. A 2010 Cochrane review found that GnRH modulators were more effective for pain relief in endometriosis than no treatment or placebo, but were not more effective than danazol or intrauterine progestogen, and had more side effects than danazol.{{cite journal | vauthors = Brown J, Pan A, Hart RJ | title = Gonadotrophin-releasing hormone analogues for pain associated with endometriosis | journal = The Cochrane Database of Systematic Reviews | issue = 12 | pages = CD008475 | date = December 2010 | volume = 2010 | pmid = 21154398 | pmc = 7388859 | doi = 10.1002/14651858.CD008475.pub2 }} A 2018 Swedish systematic review found that GnRH modulators had similar pain-relieving effects to gestagen but also decreased bone density.
  • Aromatase inhibitors are medications that block the formation of estrogen and have become of interest for researchers who are treating endometriosis.{{cite journal | vauthors = Attar E, Bulun SE | title = Aromatase inhibitors: the next generation of therapeutics for endometriosis? | journal = Fertility and Sterility | volume = 85 | issue = 5 | pages = 1307–18 | date = May 2006 | pmid = 16647373 | doi = 10.1016/j.fertnstert.2005.09.064 | doi-access = free | title-link = doi }} Examples of aromatase inhibitors include anastrozole and letrozole. Evidence for aromatase inhibitors is confirmed by numerous controlled studies that show benefit in terms of pain control and quality of life when used in combination with gestagens or oral contraceptives, with fewer side effects when used in combination with oral contraceptives like norethisterone acetate.{{cite journal | vauthors = Słopień R, Męczekalski B | title = Aromatase inhibitors in the treatment of endometriosis | journal = Przeglad Menopauzalny = Menopause Review | volume = 15 | issue = 1 | pages = 43–7 | date = March 2016 | pmid = 27095958 | pmc = 4828508 | doi = 10.5114/pm.2016.58773 | publisher = Termedia Sp. z.o.o. }} Despite multiple benefits, there are a lot of things to consider before using aromatase inhibitors for endometriosis, as it is common for them to induce functional cysts as an adverse effect. Moreover, dosages, treatment length, appropriate add-back therapies and mode of administration is still being investigated.{{cite journal | vauthors = Garzon S, Laganà AS, Barra F, Casarin J, Cromi A, Raffaelli R, Uccella S, Franchi M, Ghezzi F, Ferrero S | title = Aromatase inhibitors for the treatment of endometriosis: a systematic review about efficacy, safety and early clinical development | journal = Expert Opinion on Investigational Drugs | volume = 29 | issue = 12 | pages = 1377–1388 | date = December 2020 | pmid = 33096011 | doi = 10.1080/13543784.2020.1842356 | publisher = Informa UK Limited | s2cid = 225058751 }}
  • Progesterone receptor modulators like mifepristone and gestrinone have the potential (based on only one randomized controlled trial each) to be used as a treatment to manage pain caused by endometriosis.{{cite journal | vauthors = Fu J, Song H, Zhou M, Zhu H, Wang Y, Chen H, Huang W | title = Progesterone receptor modulators for endometriosis | journal = The Cochrane Database of Systematic Reviews | volume = 2017 | issue = 7 | pages = CD009881 | date = July 2017 | pmid = 28742263 | pmc = 6483151 | doi = 10.1002/14651858.cd009881.pub2 | publisher = Wiley }}

=Other medicines=

  • Opioids: Morphine sulphate tablets and other opioid painkillers work by mimicking the action of naturally occurring pain-reducing chemicals called "endorphins". Different long-acting and short-acting medications can be used alone or in combination to provide appropriate pain control.{{med cn|date=April 2025}}
  • Chinese herbal medicine was reported to have comparable benefits to gestrinone and danazol in patients who had had laparoscopic surgery, though the review notes that the two trials were small and of "poor methodological quality" and results should be "interpreted cautiously" as better quality research is needed.{{cite journal | vauthors = Flower A, Liu JP, Lewith G, Little P, Li Q | title = Chinese herbal medicine for endometriosis | journal = The Cochrane Database of Systematic Reviews | issue = 5 | pages = CD006568 | date = May 2012 | volume = 2012 | pmid = 22592712 | doi = 10.1002/14651858.CD006568.pub3 }}
  • Serrapeptase, a digestive enzyme found in the intestines of silkworms. Serrapeptase is widely used in Japan and Europe as an anti-inflammatory treatment.{{cite journal | vauthors = Tiwari M | title = The role of serratiopeptidase in the resolution of inflammation | journal = Asian Journal of Pharmaceutical Sciences | volume = 12 | issue = 3 | pages = 209–215 | date = May 2017 | pmid = 32104332 | pmc = 7032259 | doi = 10.1016/j.ajps.2017.01.003 }} More research is needed but serrapeptase may be used by endometriosis patients to reduce inflammation.{{cite journal| vauthors = Ethiraj S, Gopinath S |title=Production, purification, characterization, immobilization, and application of Serrapeptase: a review| doi = 10.1007/s11515-017-1461-3 |journal=Frontiers in Biology|year=2017|volume=12|issue=5|pages=333–348|s2cid=89694879}}
  • Angiogenesis inhibitors lack clinical evidence of efficacy in endometriosis therapy.{{cite journal | vauthors = Laschke MW, Menger MD | title = Anti-angiogenic treatment strategies for the therapy of endometriosis | journal = Human Reproduction Update | volume = 18 | issue = 6 | pages = 682–702 | year = 2012 | pmid = 22718320 | doi = 10.1093/humupd/dms026 | doi-access = free | title-link = doi }} Under experimental in vitro and in vivo conditions, compounds that have been shown to exert inhibitory effects on endometriotic lesions include growth factor inhibitors, endogenous angiogenesis inhibitors, fumagillin analogues, statins, cyclo-oxygenase-2 inhibitors, phytochemical compounds, immunomodulators, dopamine agonists, peroxisome proliferator-activated receptor agonists, progestins, danazol and gonadotropin-releasing hormone agonists. However, many of these agents are associated with undesirable side effects, and more research is necessary. An ideal therapy would diminish inflammation and underlying symptoms without being contraceptive.{{cite journal | vauthors = Canny GO, Lessey BA | title = The role of lipoxin A4 in endometrial biology and endometriosis | journal = Mucosal Immunology | volume = 6 | issue = 3 | pages = 439–50 | date = May 2013 | pmid = 23485944 | pmc = 4062302 | doi = 10.1038/mi.2013.9 }}{{cite journal | vauthors = Streuli I, de Ziegler D, Santulli P, Marcellin L, Borghese B, Batteux F, Chapron C | title = An update on the pharmacological management of endometriosis | journal = Expert Opinion on Pharmacotherapy | volume = 14 | issue = 3 | pages = 291–305 | date = February 2013 | pmid = 23356536 | doi = 10.1517/14656566.2013.767334 | s2cid = 10052884 }}
  • Pentoxifylline, an immunomodulating agent, has been theorized to improve pain as well as improve pregnancy rates in individuals with endometriosis. There is not enough evidence to support the effectiveness or safety of either of these uses.{{cite journal|vauthors=Grammatis AL, Georgiou EX, Becker CM|date=August 2021|title=Pentoxifylline for the treatment of endometriosis-associated pain and infertility|journal=The Cochrane Database of Systematic Reviews|volume=2021|issue=8|pages=CD007677|doi=10.1002/14651858.CD007677.pub4|pmid=34431079|pmc=8407096|s2cid=237294362}} Current American Congress of Obstetricians and Gynecologists (ACOG) guidelines do not include immunomodulators, such as pentoxifylline, in standard treatment protocols.{{cite journal | title = Practice bulletin no. 114: management of endometriosis | journal = Obstetrics and Gynecology | volume = 116 | issue = 1 | pages = 223–36 | date = July 2010 | pmid = 20567196 | doi = 10.1097/AOG.0b013e3181e8b073 }}
  • NSAIDs are anti-inflammatory medications commonly used for endometriosis patients despite unproven efficacy and unintended adverse effects.{{cite journal | vauthors = Brown J, Crawford TJ, Allen C, Hopewell S, Prentice A | title = Nonsteroidal anti-inflammatory drugs for pain in women with endometriosis | journal = The Cochrane Database of Systematic Reviews | volume = 1 | issue = 1 | pages = CD004753 | date = January 2017 | pmid = 28114727 | pmc = 6464974 | doi = 10.1002/14651858.CD004753.pub4 }}
  • Neuromodulators like gabapentin did not prove to be superior to placebo in managing pain caused by endometriosis.{{cite journal | vauthors = Saunders PT, Horne AW | title = Endometriosis: Etiology, pathobiology, and therapeutic prospects | journal = Cell | volume = 184 | issue = 11 | pages = 2807–2824 | date = May 2021 | pmid = 34048704 | doi = 10.1016/j.cell.2021.04.041 | publisher = Elsevier BV | hdl = 20.500.11820/bb7ded31-cc3d-449e-a0dc-ce4b1a0531d2 | s2cid = 235226513 | doi-access = free | title-link = doi | hdl-access = free }}

Manual physical therapy's effectiveness in treating endometriosis is unclear.{{cite journal | vauthors = Valiani M, Ghasemi N, Bahadoran P, Heshmat R | title = The effects of massage therapy on dysmenorrhea caused by endometriosis | journal = Iranian Journal of Nursing and Midwifery Research | volume = 15 | issue = 4 | pages = 167–71 | year = 2010 | pmid = 21589790 | pmc = 3093183 }}

=Comparison of interventions=

A 2021 meta-analysis found that GnRH analogs and combined hormonal contraceptives were the best treatment for reducing dyspareunia and menstrual and non-menstrual pelvic pain.{{cite journal | vauthors = Samy A, Taher A, Sileem SA, Abdelhakim AM, Fathi M, Haggag H, Ashour K, Ahmed SA, Shareef MA, AlAmodi AA, Keshta NH, Shatat HB, Salah DM, Ali AS, El Kattan EA, Elsherbini M | title = Medical therapy options for endometriosis related pain, which is better? A systematic review and network meta-analysis of randomized controlled trials | journal = Journal of Gynecology Obstetrics and Human Reproduction | volume = 50 | issue = 1 | pages = 101798 | date = January 2021 | pmid = 32479894 | doi = 10.1016/j.jogoh.2020.101798 | publisher = Elsevier BV | s2cid = 219173190 }} A 2018 Swedish systematic review found several studies but a general lack of scientific evidence for most treatments. There was only one study of sufficient quality and relevance comparing the effect of surgery and non-surgery.{{cite web|url=https://www.sbu.se/sv/publikationer/SBU-utvarderar/endometrios--diagnostik-behandling-och-bemotande/|title=Endometrios – diagnostik, behandling och bemötande|date=4 May 2018|website=sbu.se|publisher=Statens beredning för medicinsk och social utvärdering (SBU); Swedish Agency for Health Technology Assessment and Assessment of Social Services|page=121|language=sv|access-date=13 June 2018|archive-date=13 June 2018|archive-url=https://web.archive.org/web/20180613134401/https://www.sbu.se/sv/publikationer/SBU-utvarderar/endometrios--diagnostik-behandling-och-bemotande/|url-status=live}} Cohort studies indicate that surgery is effective in decreasing pain. Most complications occurred in cases of low intestinal anastomosis, while risk of fistula occurred in cases of combined abdominal or vaginal surgery, and urinary tract problems were common in intestinal surgery. The evidence was found to be insufficient regarding surgical intervention.

The advantages of physical therapy techniques are decreased cost, absence of major side-effects, it does not interfere with fertility, and near-universal increase of sexual function.{{primary source inline|date=April 2015}} {{cite journal | vauthors =Wurn BF, Wurn LJ, Patterson K, King CR, Scharf ES | title =Decreasing dyspareunia and dysmenorrhea in women with endometriosis via a manual physical therapy: Results from two independent studies | journal =Journal of Endometriosis and Pelvic Pain Disorders | volume =3 | issue = 4| pages =188–196 | year =2011 | url =http://www.j-endometriosis.com/article/decreasing-dyspareunia-and-dysmenorrhea-in-women-with-endometriosis-via-a-manual-physical-therapy--results-from-two-independent-studies-je-11-0029 | doi =10.5301/JE.2012.9088 | pmc =6154826 | url-status =live | archive-url =https://web.archive.org/web/20131029202014/http://www.j-endometriosis.com/article/decreasing-dyspareunia-and-dysmenorrhea-in-women-with-endometriosis-via-a-manual-physical-therapy--results-from-two-independent-studies-je-11-0029 | archive-date =29 October 2013 }} Disadvantages are that there are no large or long-term studies of its use for treating pain or infertility related to endometriosis.

=Treatment of infertility=

{{Main|Endometriosis and infertility}}

Surgery is more effective than medicinal intervention for addressing infertility associated with endometriosis. Surgery attempts to remove endometrium-like tissue and preserve the ovaries without damaging normal tissue. Receiving hormonal suppression therapy after surgery might be positive regarding endometriosis recurrence and pregnancy.{{cite journal | vauthors = Chen I, Veth VB, Choudhry AJ, Murji A, Zakhari A, Black AY, Agarpao C, Maas JW | title = Pre- and postsurgical medical therapy for endometriosis surgery | journal = The Cochrane Database of Systematic Reviews | volume = 11 | issue = 12 | pages = CD003678 | date = November 2020 | pmid = 33206374 | pmc = 8127059 | doi = 10.1002/14651858.CD003678.pub3 }} In vitro fertilization (IVF) procedures are effective in improving fertility in many individuals with endometriosis.

During fertility treatment, the ultralong pretreatment with GnRH-agonist has a higher chance of resulting in pregnancy for individuals with endometriosis compared to the short pretreatment.

Epidemiology

Determining how many people have endometriosis is challenging because a definitive diagnosis requires surgical visualization through laparoscopic surgery.{{cite journal |vauthors=Shafrir AL, Farland LV, Shah DK, Harris HR, Kvaskoff M, Zondervan K, Missmer SA |date=August 2018 |title=Risk for and consequences of endometriosis: A critical epidemiologic review |url=https://ora.ox.ac.uk/objects/uuid:39cf959c-3942-4d04-b99f-7be23c31217f |journal=Best Practice & Research. Clinical Obstetrics & Gynaecology |volume=51 |pages=1–15 |doi=10.1016/j.bpobgyn.2018.06.001 |pmid=30017581 |s2cid=51679656 |archive-date=23 October 2020 |access-date=23 August 2020 |archive-url=https://web.archive.org/web/20201023011153/https://ora.ox.ac.uk/objects/uuid:39cf959c-3942-4d04-b99f-7be23c31217f |url-status=live }} Criteria that are commonly used to establish a diagnosis include pelvic pain, infertility, surgical assessment, and in some cases, magnetic resonance imaging. An ultrasound can identify large clumps of tissue as potential endometriosis lesions and ovarian cysts, but it is not effective for all patients, especially in cases with smaller, superficial lesions.{{cite web |title=Endometriosis Ultrasound: Procedure, Diagnosis, & Follow Up |url=https://my.clevelandclinic.org/health/diagnostics/21814-endometriosis-ultrasound |access-date=7 March 2022 |website=Cleveland Clinic |archive-date=7 March 2022 |archive-url=https://web.archive.org/web/20220307193518/https://my.clevelandclinic.org/health/diagnostics/21814-endometriosis-ultrasound |url-status=live }}

Ethnic differences in endometriosis have been observed. The condition is more common in women of East Asian and Southeast Asian descent than in White women. Risk factors include having a family history of the condition.{{cite journal | vauthors = Velarde MC, Bucu ME, Habana MA | title = Endometriosis as a highly relevant yet neglected gynecologic condition in Asian women | journal = Endocrine Connections | volume = 12 | issue = 11 | pages = e230169 | date = November 2023 | pmid = 37676242 | pmc = 10563646 | doi = 10.1530/EC-23-0169 | doi-access = free }} "Compared with Caucasian women, Asian women are more likely to be diagnosed with endometriosis (odds ratio (OR) 1.63, 95% CI 1.03–2.58) (14). Filipinos, Indians, Japanese, and Koreans are among the top Asian ethnicities who are more likely to have endometriosis than Caucasian women (17)."

One estimate is that 10.8 million people are affected globally {{as of|2015|lc=y}}. Other sources estimate 6 to 10% of the general female population and 2 to 11% of asymptomatic women are affected. In addition, 11% of women in a general population have undiagnosed endometriosis that can be seen on magnetic resonance imaging (MRI).{{cite journal |vauthors=Buck Louis GM, Hediger ML, Peterson CM, Croughan M, Sundaram R, Stanford J, Chen Z, Fujimoto VY, Varner MW, Trumble A, Giudice LC |date=August 2011 |title=Incidence of endometriosis by study population and diagnostic method: the ENDO study |journal=Fertil. Steril. |volume=96 |issue=2 |pages=360–5 |pmc=3143230 |pmid=21719000 |doi=10.1016/j.fertnstert.2011.05.087}} Endometriosis is most common in those in their thirties and forties; however, it can begin in girls as early as eight years old. It results in few deaths with unadjusted and age-standardized death rates of 0.1 and 0.0 per 100,000. Endometriosis was first determined to be a separate condition in the 1920s.{{cite book |url=https://books.google.com/books?id=Wu0gfwFUfz8C&pg=PA3 |title=Endometriosis: Science and Practice |vauthors=Brosens I |date=2012 |publisher=John Wiley & Sons |isbn=978-1-4443-9849-6 |page=3}} Before that time, endometriosis and adenomyosis were considered together. It is unclear who first described the disease.

It chiefly affects adults from premenarche to postmenopause, regardless of race or ethnicity or whether or not they have had children, and is estimated to affect over 190 million women in their reproductive years.{{cite journal | vauthors = Nothnick WB | title = The emerging use of aromatase inhibitors for endometriosis treatment | journal = Reproductive Biology and Endocrinology | volume = 9 | page = 87 | date = June 2011 | pmid = 21693036 | pmc = 3135533 | doi = 10.1186/1477-7827-9-87 | doi-access = free | title-link = doi }} Incidences of endometriosis have occurred in postmenopausal individuals,{{cite journal | vauthors = Bulun SE, Zeitoun K, Sasano H, Simpson ER | title = Aromatase in aging women | journal = Seminars in Reproductive Endocrinology | volume = 17 | issue = 4 | pages = 349–58 | year = 1999 | pmid = 10851574 | doi = 10.1055/s-2007-1016244 | s2cid = 25628258 }} and in less common cases, individuals may have had endometriosis symptoms before they even reach menarche.{{cite journal | vauthors = Batt RE, Mitwally MF | title = Endometriosis from thelarche to midteens: pathogenesis and prognosis, prevention and pedagogy | journal = Journal of Pediatric and Adolescent Gynecology | volume = 16 | issue = 6 | pages = 337–47 | date = December 2003 | pmid = 14642954 | doi = 10.1016/j.jpag.2003.09.008 }}

The rate of recurrence of endometriosis is estimated to be 40-50% for adults over five years.{{cite journal | vauthors = Guo SW | title = Recurrence of endometriosis and its control | journal = Human Reproduction Update | volume = 15 | issue = 4 | pages = 441–61 | date = 11 March 2009 | pmid = 19279046 | doi = 10.1093/humupd/dmp007 | doi-access = free | title-link = doi }} The rate of recurrence has been shown to increase with time from surgery and is not associated with the stage of the disease, initial site, surgical method used, or post-surgical treatment.

History

Endometriosis was first discovered microscopically by Karl von Rokitansky in 1860,{{cite book| vauthors = Batt RE |title=A history of endometriosis|year=2011|publisher=Springer|location=London|isbn=978-0-85729-585-9|pages=13–38|doi=10.1007/978-0-85729-585-9}} although the earliest antecedents may have stemmed from concepts published almost 4,000 years ago.{{cite journal | vauthors = Nezhat C, Nezhat F, Nezhat C | title = Endometriosis: ancient disease, ancient treatments | journal = Fertility and Sterility | volume = 98 | issue = 6 Suppl | pages = S1-62 | date = December 2012 | pmid = 23084567 | doi = 10.1016/j.fertnstert.2012.08.001 | doi-access = free | title-link = doi }} The Hippocratic Corpus outlines symptoms similar to endometriosis, including uterine ulcers, adhesions, and infertility. Historically, women with these symptoms were treated with leeches, straitjackets, bloodletting, chemical douches, genital mutilation, pregnancy (as a form of treatment), hanging upside down, surgical intervention, and even killing due to suspicion of demonic possession. Hippocratic doctors recognized and treated chronic pelvic pain as a true organic disorder 2,500 years ago, but during the Middle Ages, there was a shift into believing that women with pelvic pain were mad, immoral, imagining the pain, or simply misbehaving. The symptoms of inexplicable chronic pelvic pain were often attributed to imagined madness, female weakness, promiscuity, or hysteria. The historical diagnosis of hysteria, which was thought to be a psychological disease, may have indeed been endometriosis. The idea that chronic pelvic pain was related to mental illness influenced modern attitudes regarding individuals with endometriosis, leading to delays in correct diagnosis and indifference to the patients' true pain throughout the 20th and into the 21st century.

Hippocratic doctors believed that delaying childbearing could trigger diseases of the uterus, which caused endometriosis-like symptoms. Women with dysmenorrhea were encouraged to marry and have children at a young age. The fact that Hippocratics were recommending changes in marriage practices due to an endometriosis-like illness implies that this disease was likely common, with rates higher than the 5-15% prevalence that is often cited today. If indeed this disorder was so common historically, this may point away from modern theories that suggest links between endometriosis and dioxins, PCBs, and chemicals.

The early treatment of endometriosis was surgical and included oophorectomy (removal of the ovaries) and hysterectomy (removal of the uterus).{{cite journal | vauthors = Meigs JV | title = Endometriosis—Its Significance | journal = Ann. Surg. | volume = 114 | issue = 5 | pages = 866–74 | date = November 1941 | pmid = 17857917 | pmc = 1385984 | doi = 10.1097/00000658-194111000-00007 }} In the 1940s, the only available hormonal therapies for endometriosis were high-dose testosterone and high-dose estrogen therapy.{{cite journal | vauthors = Barbieri RL | title = Hormonal therapy of endometriosis | journal = Infertility and Reproductive Medicine Clinics of North America | volume = 3 | issue = 1 | pages = 187–200 | date = January 1992 | quote = The hormonal therapy of endometriosis continues to evolve. In the 1940s and 1950s, high-dose testosterone and diethylstilbestrol regimens were the only hormonal agents available in the treatment of endometriosis. These agents, although efficacious, were associated with intolerable side effects. The current armamentarium of hormonal GnRH analogues, danazol, and synthetic progestins is efficacious and has fewer side effects.}} High-dose estrogen therapy with diethylstilbestrol for endometriosis was first reported by Karnaky in 1948 and was the main pharmacological treatment for the condition in the early 1950s.{{cite book | vauthors = Aiman J |title=Infertility: Diagnosis and Management|url=https://books.google.com/books?id=D4_TBwAAQBAJ&pg=PA261|date=6 December 2012|publisher=Springer Science & Business Media|isbn=978-1-4613-8265-2|pages=261–}}{{cite book| vauthors = Josimovich JB |title=Gynecologic Endocrinology|url=https://books.google.com/books?id=9vv2BwAAQBAJ&pg=PA387|date=11 November 2013|publisher=Springer Science & Business Media |isbn=978-1-4613-2157-6|pages=387–}}{{cite book| vauthors = Kistner RW |title=Kistner's Gynecology: Principles and Practice|url=https://books.google.com/books?id=WAdtAAAAMAAJ|year=1995|publisher=Mosby|isbn=978-0-8151-7479-0|page=263}} Pseudopregnancy (high-dose estrogen–progestogen therapy) for endometriosis was first described by Kistner in the late 1950s. Pseudopregnancy, as well as progestogen monotherapy, dominated the treatment of endometriosis in the 1960s and 1970s. These agents, although efficacious, were associated with intolerable side effects. Danazol was first described for endometriosis in 1971 and became the main therapy in the 1970s and 1980s. In the 1980s, GnRH agonists gained prominence for the treatment of endometriosis and by the 1990s had become the most widely used therapy. Oral GnRH antagonists such as elagolix were introduced for the treatment of endometriosis in 2018.{{cite journal | vauthors = Barra F, Grandi G, Tantari M, Scala C, Facchinetti F, Ferrero S | title = A comprehensive review of hormonal and biological therapies for endometriosis: latest developments | journal = Expert Opin Biol Ther | volume = 19 | issue = 4 | pages = 343–360 | date = April 2019 | pmid = 30763525 | doi = 10.1080/14712598.2019.1581761 | s2cid = 73455399 | hdl = 11380/1201437 | hdl-access = free }}

Society and culture

=Public figures=

Several public figures have spoken about their experience with endometriosis, including:

{{div col |colwidth=20em}}

  • RuthAnne{{cite web |vauthors=Gallagher K |date=31 March 2021 |title=Irish songwriter Ruth Anne opens up on her debilitating fight with endometriosis |url=https://www.irishmirror.ie/showbiz/irish-songwriter-ruthanne-opens-up-23831453 |access-date=11 April 2023 |website=Irish Mirror |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411192710/https://www.irishmirror.ie/showbiz/irish-songwriter-ruthanne-opens-up-23831453 |url-status=live }}
  • Emma Barnett{{cite web|url=https://www.theguardian.com/commentisfree/2020/oct/22/endometriosis-women-pain-diagnosis-report-mps|title=Endometriosis showed me we need better ways to talk about women's pain | Emma Barnett|website=TheGuardian.com|date=22 October 2020}}
  • Emma Bunton{{cite web |url=https://www.her.ie/entertainment/nearly-broke-spice-girls-emma-bunton-describes-struggling-conceive-endometriosis-491098 |title='Nearly broke me' Spice Girls' Emma Bunton describes struggling to conceive with endometriosis |work=Her.ie |date=11 May 2020 |access-date=28 May 2021 | vauthors = Hayden J }}
  • Alexa Chung{{cite web |date=18 July 2019 |title=Alexa Chung Reveals Her Battle With Endometriosis—And Taps Into an Empowering Online Community |url=https://www.vogue.com/article/alexa-chung-endometriosis-battle-instagram-community |access-date=11 April 2023 |website=Vogue |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411192807/https://www.vogue.com/article/alexa-chung-endometriosis-battle-instagram-community |url-status=live }}
  • Danielle Collins{{cite news|url=https://www.wtatennis.com/news/2211449/champions-corner-collins-unleashes-the-best-tennis-of-her-career-after-life-changing-surgery|title=Champions Corner: Collins unleashes the best tennis of her career after life-changing surgery|website=Women's Tennis Association|access-date=3 March 2022|archive-date=2 February 2022|archive-url=https://web.archive.org/web/20220202222551/https://www.wtatennis.com/news/2211449/champions-corner-collins-unleashes-the-best-tennis-of-her-career-after-life-changing-surgery|url-status=live}}
  • Olivia Culpo{{cite magazine |title=Watch: Olivia Culpo Shares Emotional Details of Her Endometriosis Journey |url=https://lifestyle.si.com/wellness/olivia-culpo-shares-endometriosis-journey |magazine=Sports Illustrated}}
  • Lena Dunham{{cite web |title=Lena Dunham Gives Health Update Following Battle with Endometriosis |website=People |url=https://people.com/celebrity/lena-dunham-gives-health-update-following-battle-with-endometriosis/ |access-date=11 April 2023 |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411191944/https://people.com/celebrity/lena-dunham-gives-health-update-following-battle-with-endometriosis/ |url-status=live }}
  • Diana Falzone
  • Abby Finkenauer{{cite web|date=5 March 2020 |title=Congresswoman Abby Finkenauer Opens Up About Her Struggle With Endometriosis |website=Glamour |url=https://www.glamour.com/story/abby-finkenauer-endometriosis-caucus|access-date=17 December 2021}}
  • Bethenny Frankel{{cite web |title=EXCLUSIVE: Bethenny Frankel in Tears Over Recent Health Scare: 'I Really Tried to Hold It All Together' |website=Entertainment Tonight |url=https://www.etonline.com/news/191621_bethenny_frankel_tears_over_recent_health_scare_i_really_tried_to_hold_it_all_together |access-date=11 April 2023 |date=22 June 2016 |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411191944/https://www.etonline.com/news/191621_bethenny_frankel_tears_over_recent_health_scare_i_really_tried_to_hold_it_all_together |url-status=live }}
  • Whoopi Goldberg{{cite web |url=https://www.endofound.org/blossom-ball-2009-whoopi-goldberg/ |title=Blossom Ball 2009 – Whoopi Goldberg |publisher=Endometriosis Foundation of America |date=27 November 2007 |access-date=21 January 2021}}
  • Mel Greig{{cite news |title=Radio presenter Mel Greig's shocking photo shows reality of living with endometriosis |url=https://www.news.com.au/lifestyle/health/health-problems/radio-presenter-mel-greigs-shocking-photo-shows-reality-of-living-with-endometriosis/news-story/4638a8c8899928d4ebb8dfd82ef820a7 |work=News.com.au |date=28 March 2018 |access-date=21 January 2021 |archive-date=13 November 2018 |archive-url=https://web.archive.org/web/20181113210524/https://www.news.com.au/lifestyle/health/health-problems/radio-presenter-mel-greigs-shocking-photo-shows-reality-of-living-with-endometriosis/news-story/4638a8c8899928d4ebb8dfd82ef820a7 |url-status=live }}
  • Halsey{{cite magazine |url=https://www.billboard.com/articles/news/7647866/halsey-surgery-endometriosis/ |title=Halsey undergoes surgery to treat endometriosis |magazine=Billboard |date=7 January 2017 |access-date=27 November 2018 | vauthors = Iasimone A }}
  • Emma Hayes{{cite web |title=Emma Hayes: Chelsea manager has emergency hysterectomy because of endometriosis |url=https://www.bbc.co.uk/sport/football/63246126 |website=BBC Sport |publisher=BBC |access-date=28 December 2022 |date=13 October 2022 |archive-date=28 December 2022 |archive-url=https://web.archive.org/web/20221228162245/https://www.bbc.co.uk/sport/football/63246126 |url-status=live }}
  • Julianne Hough{{cite web |url=https://www.today.com/health/julianne-hough-endometriosis-i-just-thought-it-was-normal-t116059 |title=Julianne Hough opens up about endometriosis: 'I just thought it was normal' |work=Today |date=9 September 2017 |access-date=21 January 2021 |vauthors=Murray R |archive-date=13 November 2018 |archive-url=https://web.archive.org/web/20181113210750/https://www.today.com/health/julianne-hough-endometriosis-i-just-thought-it-was-normal-t116059 |url-status=live }}{{cite web |date=23 April 2018 |title=Julianne Hough Won't Let Endometriosis Stop Her From Having a Family With Brooks Laich: "We've Discussed Options" |url=https://www.endofound.org/julianne-hough-wont-let-endometriosis-stop-her-from-having-a-family-with-brooks-laich-weve-discussed |access-date=31 December 2023 |website=Endometriosis : Causes - Symptoms - Diagnosis - and Treatment |language=en |archive-date=31 December 2023 |archive-url=https://web.archive.org/web/20231231012944/https://www.endofound.org/julianne-hough-wont-let-endometriosis-stop-her-from-having-a-family-with-brooks-laich-weve-discussed |url-status=live }}{{cite web |vauthors=Olya G |date=24 March 2017 |title=Julianne Hough Opens Up About Her Struggle with Endometriosis |url=https://people.com/health/julianne-hough-endometriosis/ |access-date=31 December 2023 |website=Peoplemag |language=en |archive-date=31 December 2023 |archive-url=https://web.archive.org/web/20231231012944/https://people.com/health/julianne-hough-endometriosis/ |url-status=live }}
  • Bridget Hustwaite{{cite web |url=https://www.abc.net.au/triplej/programs/hack/pain-of-endometriosis-sucks-but-so-does-just-getting-a-diagnosis/10119888/ |title=Endometriosis: The pain sucks, but so does just getting a diagnosis |work=Hack on Triple J |date=14 August 2018 |access-date=21 January 2021 |vauthors=Hustwaite B |author-link=Bridget Hustwaite |archive-date=18 August 2018 |archive-url=https://web.archive.org/web/20180818073027/https://www.abc.net.au/triplej/programs/hack/pain-of-endometriosis-sucks-but-so-does-just-getting-a-diagnosis/10119888/ |url-status=live }}
  • Bindi Irwin{{cite news |url=https://www.abc.net.au/news/2023-03-08/bindi-irwin-reveals-struggle-with-endometriosis/102066858 |title=On International Women's Day, Bindi Irwin reveals 10-year struggle with endometriosis |vauthors=Dye J |website=Australian Broadcasting Corporation News |date=8 March 2023 |access-date=10 March 2023 |archive-date=9 March 2023 |archive-url=https://web.archive.org/web/20230309213705/https://www.abc.net.au/news/2023-03-08/bindi-irwin-reveals-struggle-with-endometriosis/102066858 |url-status=live }}
  • Jaime King{{cite web |date=24 April 2022 |title=Why Jaime King Decided It Was Time to Talk About Her Years-Long Fertility Struggle |url=https://www.eonline.com/news/1327944/why-jaime-king-decided-it-was-time-to-talk-about-her-years-long-fertility-struggle |access-date=11 April 2023 |website=E! Online}}
  • Padma Lakshmi{{cite web |url=https://www.youtube.com/watch?v=Gfixp0jUjKg |title=Padma Lakshmi shares her struggle with endometriosis |work=Redbook |via=YouTube |date=17 October 2011 |access-date=9 March 2021 |archive-url=https://web.archive.org/web/20201102201459/https://www.youtube.com/watch?v=Gfixp0jUjKg |archive-date=2 November 2020 |url-status=live}}
  • Cyndi Lauper{{cite news |vauthors=Hajdu D |date=30 November 2012 |title='80s Pop |work=The New York Times |url=https://www.nytimes.com/2012/12/02/books/review/cyndi-lauper-a-memoir.html |access-date=11 April 2023 |issn=0362-4331 |archive-date=29 June 2017 |archive-url=https://web.archive.org/web/20170629020918/http://www.nytimes.com/2012/12/02/books/review/cyndi-lauper-a-memoir.html |url-status=live }}
  • Jillian Michaels{{cite web |title=No Kidding: Jillian Michaels is Not "Doing That" to Her Body |url=https://www.bitchmedia.org/post/no-kidding-jillian-michaels-is-not-doing-that-to-her-body |access-date=11 April 2023 |website=Bitch Media |date=7 February 2011 |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411191944/https://www.bitchmedia.org/post/no-kidding-jillian-michaels-is-not-doing-that-to-her-body |url-status=dead }}
  • Monica{{cite web |date=9 June 2021 |title=Monica's Second Surgery For Her Endometriosis Was 'Very Hard' And She 'Ended Up Having Multiple Blood Transfusions' |url=https://madamenoire.com/1230703/monica-endometriosis-2/ |access-date=11 April 2023 |website=MadameNoire |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411191944/https://madamenoire.com/1230703/monica-endometriosis-2/ |url-status=live }}
  • Marilyn Monroe{{cite web |vauthors=Wilson-Beevers H |date=28 September 2022 |title=Marilyn Monroe's battle with endometriosis is often ignored – but it's a vital part of her story |website=Cosmopolitan |url=https://www.cosmopolitan.com/uk/body/health/a41419168/marilyn-monroe-endometriosis/ |access-date=11 April 2023 |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411195217/https://www.cosmopolitan.com/uk/body/health/a41419168/marilyn-monroe-endometriosis/ |url-status=live }}
  • Tia Mowry{{cite web |vauthors=Henderson W |date=14 June 2017 |title=Tia Mowry Releases a Cookbook for Women With Endometrosis |url=https://endometriosisnews.com/2017/06/14/tia-mowry-introduces-cookbook-for-women-with-endometriosis/ |access-date=11 April 2023 |website=Endometriosis News |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411191944/https://endometriosisnews.com/2017/06/14/tia-mowry-introduces-cookbook-for-women-with-endometriosis/ |url-status=live }}
  • Sinéad O'Connor{{cite web |vauthors=Devereux N |url=https://vipmagazine.ie/sinead-oconnor-tells-of-illness-hell/ |title=Sinead O'Connor tells of illness hell: "I'm in a bad way" |date=19 August 2015 |access-date=5 August 2023 |archive-date=5 August 2023 |archive-url=https://web.archive.org/web/20230805193756/https://vipmagazine.ie/sinead-oconnor-tells-of-illness-hell/ |url-status=live }}
  • Dolly Parton{{cite web| vauthors = Vargas A |title=12 celebrities who have opened up about having endometriosis |url=https://www.insider.com/celebrities-with-endometriosis-2019-3 |access-date=6 August 2021|website=Insider}}
  • Florence Pugh{{cite web|last1=Shultz|first1=Cara Lynn|title=Florence Pugh Says It Was a 'Mind-Boggling Realization' to Learn She Had to Freeze Her Eggs at 27|url=https://people.com/florence-pugh-froze-eggs-27-pcos-endometriosis-she-md-podcast-8746962|website=People|date=19 November 2024|access-date=19 November 2024|archive-date=19 November 2024|archive-url=https://web.archive.org/web/20241119154617/https://people.com/florence-pugh-froze-eggs-27-pcos-endometriosis-she-md-podcast-8746962|url-status=live}}
  • Daisy Ridley{{cite web |vauthors=Scott E |url=http://www.cosmopolitan.co.uk/entertainment/news/a43962/daisy-ridley-opened-up-about-her-struggle-with-endomitriosis/ |title=Daisy Ridley opened up about her struggle with endometriosis |work=Cosmopolitan |date=12 June 2016 |access-date=29 June 2021 |archive-date=8 August 2016 |archive-url=https://web.archive.org/web/20160808102649/http://www.cosmopolitan.co.uk/entertainment/news/a43962/daisy-ridley-opened-up-about-her-struggle-with-endomitriosis/ |url-status=live }}
  • Emma Roberts{{cite web | publisher = Condé Nast |url=https://www.self.com/story/emma-roberts-endometriosis-pregnancy/ |title=Emma Roberts shares how her undiagnosed endometriosis affected her pregnancy journey |work=Self |date=11 November 2020 |access-date=15 July 2021}}
  • Susan Sarandon{{cite web |title=EFA2011: Susan Sarandon speaks up about endometriosis |work=Endometriosis.org |url=https://endometriosis.org/news/congress-highlights/susan-sarandon-speaks-up-about-endometriosis/ |access-date=11 April 2023 |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411191946/https://endometriosis.org/news/congress-highlights/susan-sarandon-speaks-up-about-endometriosis/ |url-status=live }}
  • Amy Schumer{{cite web |title=Amy Schumer 'feeling good' after endometriosis surgery and liposuction |url=https://independenttribune.com/entertainment/amy-schumer-feeling-good-after-endometriosis-surgery-and-liposuction/video_b81d1935-b96d-5726-999a-83464d9cb89b.html |access-date=11 April 2023 |website=The Independent Tribune |date=20 January 2022 |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411192345/https://independenttribune.com/entertainment/amy-schumer-feeling-good-after-endometriosis-surgery-and-liposuction/video_b81d1935-b96d-5726-999a-83464d9cb89b.html |url-status=live }}
  • Kirsten Storms{{cite web|date=25 December 2012|title='General Hospital': Kirsten Storms opens up about return – The TV Guy – Orlando Sentinel|url=http://blogs.orlandosentinel.com/entertainment_tv_tvblog/2012/08/general-hospital-kirsten-storms-opens-up-about-return.html|access-date=18 October 2021|archive-url=https://web.archive.org/web/20121225185503/http://blogs.orlandosentinel.com/entertainment_tv_tvblog/2012/08/general-hospital-kirsten-storms-opens-up-about-return.html|archive-date=25 December 2012}}
  • Gabrielle Union{{cite web | vauthors = Haller S |title=Gabrielle Union says she probably can't get pregnant because of adenomyosis. What exactly is that? |website=USA Today |url=https://www.usatoday.com/story/life/allthemoms/2018/08/15/gabrielle-union-explains-infertility-type-endometriosis-called-adenomyosis/999052002/ |access-date=11 April 2023}}
  • Lacey Schwimmer{{cite web |vauthors=((Staff Writer)) |title=Another victim of the 'Dancing With The Stars' curse |url=https://www.dispatch.com/story/news/2008/10/30/another-victim-dancing-with-stars/24005782007/ |access-date=31 December 2023 |website=The Columbus Dispatch |language=en-US |archive-date=19 January 2024 |archive-url=https://web.archive.org/web/20240119032448/https://www.dispatch.com/story/news/2008/10/30/another-victim-dancing-with-stars/24005782007/ |url-status=live }}{{cite web |vauthors=Richenthal M |date=30 October 2008 |title=Lacey Schwimmer is Also Sick |url=https://www.tvfanatic.com/2008/10/lacey-schwimmer-is-also-sick/ |access-date=31 December 2023 |website=TV Fanatic |language=en |archive-date=31 December 2023 |archive-url=https://web.archive.org/web/20231231012944/https://www.tvfanatic.com/2008/10/lacey-schwimmer-is-also-sick/ |url-status=live }}{{cite web |date=23 March 2017 |title=Lena Dunham, Julianne Hough and More Who've Opened Up About Endometriosis Battles: "You Don't Have to Ignore Pain" |website=E! Online |url=https://www.eonline.com/news/838260/lena-dunham-julianne-hough-and-more-who-ve-opened-up-about-endometriosis-battles-you-don-t-have-to-ignore-pain |access-date=31 December 2023 |archive-date=31 December 2023 |archive-url=https://web.archive.org/web/20231231012944/https://www.eonline.com/news/838260/lena-dunham-julianne-hough-and-more-who-ve-opened-up-about-endometriosis-battles-you-don-t-have-to-ignore-pain |url-status=live }}
  • Chrissy Teigen{{cite web |vauthors=Mazziotta J |url=https://people.com/health/chrissy-teigen-endometriosis-surgery-better-than-pain/ |title=Chrissy Teigen says endometriosis surgery was 'a toughie' but better than 'the pain of endo' |work=People |date=5 February 2021 |access-date=15 July 2021 |archive-date=15 July 2021 |archive-url=https://web.archive.org/web/20210715053905/https://people.com/health/chrissy-teigen-endometriosis-surgery-better-than-pain/ |url-status=live }}
  • Emma Watkins{{cite web |url=https://www.perthnow.com.au/entertainment/yellow-wiggle-emma-watkins-opens-up-about-the-agony-of-endometriosis-ng-b881137647z |title=Yellow Wiggle Emma Watkins opens up about the agony of endometriosis |work=PerthNow |date=16 March 2019 |access-date=21 January 2021 |archive-date=6 February 2020 |archive-url=https://web.archive.org/web/20200206010025/https://www.perthnow.com.au/entertainment/yellow-wiggle-emma-watkins-opens-up-about-the-agony-of-endometriosis-ng-b881137647z |url-status=live }}
  • Mae Whitman{{cite web |date=21 May 2020 |title=Mae Whitman: 'Endometriosis Is Like Being Shot With a Cannonball in the Stomach' |url=https://www.glamour.com/story/mae-whitman-on-navigating-a-hollywood-career-while-battling-endometriosis |access-date=11 April 2023 |website=Glamour |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411192952/https://www.glamour.com/story/mae-whitman-on-navigating-a-hollywood-career-while-battling-endometriosis |url-status=live }}
  • Jessica Williams{{cite web |date=12 April 2022 |title=Jessica Williams on the 'Debilitating' Symptom That Led to Her Endometriosis Diagnosis |url=https://www.self.com/story/jessica-williams-endometriosis |access-date=11 April 2023 |website=Self |archive-date=11 April 2023 |archive-url=https://web.archive.org/web/20230411192859/https://www.self.com/story/jessica-williams-endometriosis |url-status=live }}
  • Leah Williamson{{cite web |vauthors=Dervish-O'Kane R |title=Leah Williamson, captain of the Lionesses, is our January cover star |url=https://www.womenshealthmag.com/uk/health/a42306525/leah-williamson-january-2023/ |website=Women's Health |publisher=Hearst UK |access-date=28 December 2022 |date=27 December 2022 |archive-date=28 December 2022 |archive-url=https://web.archive.org/web/20221228000326/https://www.womenshealthmag.com/uk/health/a42306525/leah-williamson-january-2023/ |url-status=live }}

{{div col end}}

=Economic burden=

The economic burden of endometriosis is widespread and multifaceted.{{cite journal |vauthors=Gao X, Outley J, Botteman M, Spalding J, Simon JA, Pashos CL |title=Economic burden of endometriosis |journal=Fertility and Sterility |volume=86 |issue=6 |pages=1561–72 |date=December 2006 |pmid=17056043 |doi=10.1016/j.fertnstert.2006.06.015 |s2cid=20623034 |doi-access=free |title-link=doi}} Endometriosis is a chronic disease that has direct and indirect costs, which include loss of work days, direct costs of treatment, symptom management, and treatment of other associated conditions such as depression or chronic pain. One factor that seems to be associated with especially high costs is the delay between the onset of symptoms and diagnosis.

Costs vary greatly between countries.{{cite journal | vauthors = Koltermann KC, Dornquast C, Ebert AD, Reinhold T | s2cid = 32839234 | title = Economic Burden of Endometriosis: A Systematic Review | journal = Ann Reprod Med Treat | date = 2017 | volume = 2 | issue = 2m | page = 1015 }} Two factors that contribute to the economic burden include healthcare costs and losses in productivity. A Swedish study of 400 endometriosis patients found "Absence from work was reported by 32% of the women, while 36% reported reduced time at work because of endometriosis".{{cite journal | vauthors = Grundström H, Hammar Spagnoli G, Lövqvist L, Olovsson M | title = Healthcare Consumption and Cost Estimates Concerning Swedish Women with Endometriosis | language = english | journal = Gynecologic and Obstetric Investigation | volume = 85 | issue = 3 | pages = 237–244 | date = 2020 | pmid = 32248191 | doi = 10.1159/000507326 | s2cid = 214811610 | doi-access = free | title-link = doi }} An additional cross sectional study with Puerto Rican women, "found that endometriosis-related and coexisting symptoms disrupted all aspects of women's daily lives, including physical limitations that affected doing household chores and paid employment. The majority of women (85%) experienced a decrease in the quality of their work; 20% reported being unable to work because of pain, and over two-thirds of the sample continued to work despite their pain."{{cite journal | vauthors = Soliman AM, Coyne KS, Gries KS, Castelli-Haley J, Snabes MC, Surrey ES | title = The Effect of Endometriosis Symptoms on Absenteeism and Presenteeism in the Workplace and at Home | journal = Journal of Managed Care & Specialty Pharmacy | volume = 23 | issue = 7 | pages = 745–754 | date = July 2017 | pmid = 28650252 | doi = 10.18553/jmcp.2017.23.7.745 | pmc = 10398072 | doi-access = free | title-link = doi }} A study published in the UK in 2025 found that after women received a diagnosis of endometriosis in an English NHS hospital their earnings were on average £56 per month less in the four to five years after diagnosis than they were in the two years before. There was also a reduction in the proportion of women in employment.{{cite news |last1=Snowdon |first1=Catherine |title=Women with endometriosis earn less, research shows |url=https://www.bbc.co.uk/news/articles/c0k5rp87nzlo |access-date=5 February 2025 |publisher=BBC |date=5 February 2025}}

=Medical culture=

There are many barriers that those affected face in receiving diagnosis and treatment for endometriosis. Some of these include outdated standards for laparoscopic evaluation, stigma about discussing menstruation and sex, lack of understanding of the disease, primary-care physicians' lack of knowledge, and assumptions about typical menstrual pain.{{cite journal | vauthors = As-Sanie S, Black R, Giudice LC, Gray Valbrun T, Gupta J, Jones B, Laufer MR, Milspaw AT, Missmer SA, Norman A, Taylor RN, Wallace K, Williams Z, Yong PJ, Nebel RA | title = Assessing research gaps and unmet needs in endometriosis | journal = American Journal of Obstetrics and Gynecology | volume = 221 | issue = 2 | pages = 86–94 | date = August 2019 | pmid = 30790565 | doi = 10.1016/j.ajog.2019.02.033 | s2cid = 73480251 }} On average, those later diagnosed with endometriosis waited 2.3 years after the onset of symptoms before seeking treatment, and nearly three-quarters of women receive a misdiagnosis before endometriosis.{{cite journal |vauthors=Hudelist G, Fritzer N, Thomas A, Niehues C, Oppelt P, Haas D, Tammaa A, Salzer H |title=Diagnostic delay for endometriosis in Austria and Germany: causes and possible consequences |journal=Human Reproduction |volume=27 |issue=12 |pages=3412–6 |date=December 2012 |pmid=22990516 |doi=10.1093/humrep/des316 |doi-access=free |title-link=doi}} Self-help groups say practitioners delay making the diagnosis, often because they do not consider it a possibility. There is a typical delay of 7–12 years from symptom onset in affected individuals to professional diagnosis.{{cite journal |date=December 2003 |title=Test d'auto-évaluation du JOGC |journal=Journal of Obstetrics and Gynaecology Canada |volume=25 |issue=12 |pages=1046–1051 |doi=10.1016/s1701-2163(16)30350-4 |issn=1701-2163}} There is a general lack of knowledge about endometriosis among primary care physicians. Half of the general health care providers surveyed in a 2013 study could not name three symptoms of endometriosis.{{cite journal | vauthors = Quibel A, Puscasiu L, Marpeau L, Roman H | title = [General practitioners and the challenge of endometriosis screening and care: results of a survey] | journal = Gynécologie, Obstétrique & Fertilité | volume = 41 | issue = 6 | pages = 372–80 | date = June 2013 | pmid = 22521982 | doi = 10.1016/j.gyobfe.2012.02.024 }} Healthcare providers are also likely to dismiss described symptoms as normal menstruation.{{cite journal | vauthors = Arruda MS, Petta CA, Abrão MS, Benetti-Pinto CL | title = Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women | journal = Human Reproduction | volume = 18 | issue = 4 | pages = 756–9 | date = April 2003 | pmid = 12660267 | doi = 10.1093/humrep/deg136 | doi-access = free | title-link = doi }} Younger patients may also feel uncomfortable discussing symptoms with a physician.

=Race and ethnicity=

Race and ethnicity may impact how endometriosis affects one's life. Endometriosis is less thoroughly studied among Black people, and the research that has been done is outdated.{{cite journal| vauthors = Shade GH, Lane M, Diamond MP |date=24 June 2011 |title=Endometriosis in the African American woman—racially, a different entity? |journal=Gynecological Surgery |volume=9 |pages=59–62 |doi=10.1007/s10397-011-0685-5 |s2cid=6288739 |doi-access=free |title-link=doi}}

{{cite journal | vauthors = Hoffman KM, Trawalter S, Axt JR, Oliver MN | title = Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites| journal = Proceedings of the National Academy of Sciences of the United States of America | volume = 113 | issue = 16 | pages = 4296–301 | date = April 2016 | pmid = 27044069 | pmc = 4843483 | doi = 10.1073/pnas.1516047113 | doi-access = free | title-link = doi | bibcode = 2016PNAS..113.4296H }}

Cultural differences among ethnic groups also contribute to attitudes toward and treatment of endometriosis, especially in Hispanic or Latino communities. A study done in Puerto Rico in 2020 found that health care and interactions with friends and family related to discussing endometriosis were affected by stigma.{{cite journal | vauthors = Matías-González Y, Sánchez-Galarza AN, Flores-Caldera I, Rivera-Segarra E | title = "Es que tú eres una changa": stigma experiences among Latina women living with endometriosis | journal = Journal of Psychosomatic Obstetrics and Gynaecology | volume = 42 | issue = 1 | pages = 67–74 | date = March 2021 | pmid = 32964770 | doi = 10.1080/0167482X.2020.1822807 | pmc = 8893272 | s2cid = 221862356 }} The most common finding was a referral to those expressing pain related to endometriosis as "changuería" or "changas", terms used in Puerto Rico to describe pointless whining and complaining, often directed at children.

= Stigma =

The existing stigma surrounding women's health, specifically endometriosis, can lead to patients not seeking diagnoses, lower quality of healthcare, increased barriers to care and treatment, and negative reception from members of society.{{cite journal | vauthors = Sims OT, Gupta J, Missmer SA, Aninye IO | title = Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay | journal = International Journal of Environmental Research and Public Health | volume = 18 | issue = 15 | page = 8210 | date = August 2021 | pmid = 34360501 | pmc = 8346066 | doi = 10.3390/ijerph18158210 | doi-access = free }} Additionally, menstrual stigma significantly contributes to the broader issue of endometriosis stigma, creating an interconnected challenge that extends beyond reproductive health.{{cite journal | vauthors = Kocas HD, Rubin LR, Lobel M | title = Stigma and mental health in endometriosis | journal = European Journal of Obstetrics & Gynecology and Reproductive Biology | volume = 19 | pages = 100228 | date = September 2023 | pmid = 37654520 | pmc = 10465859 | doi = 10.1016/j.eurox.2023.100228 | publisher = Elsevier BV | doi-access = free }}{{cite web |vauthors=Henry JE |date=27 May 2022 |title=Period Stigma and the Unacknowledged System of Oppression |url=https://digitaleducation.stanford.edu/period-stigma-and-unacknowledged-system-oppression |access-date=24 November 2023 |website=Stanford {{!}} Digital Education |language=en |archive-date=24 November 2023 |archive-url=https://web.archive.org/web/20231124232217/https://digitaleducation.stanford.edu/period-stigma-and-unacknowledged-system-oppression |url-status=live }}

Widespread awareness campaigns, developments, and implementations aimed to multilevel anti-stigma organizational and structural changes, as well as more qualitative studies of the endometriosis stigma, help to overcome the harm of the phenomenon.{{cite journal | vauthors = Sims OT, Gupta J, Missmer SA, Aninye IO | title = Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay | journal = International Journal of Environmental Research and Public Health | volume = 18 | issue = 15 | pages = 8210 | date = August 2021 | pmid = 34360501 | pmc = 8346066 | doi = 10.3390/ijerph18158210 | doi-access = free }}

Research

Preliminary research on mouse models showed that monoclonal antibodies, as well as inhibitors of MyD88 downstream signaling pathway, can reduce lesion volume. Thanks to that, clinical trials are being done on using a monoclonal antibody directed against IL-33 and using anakinra, an IL-1 receptor antagonist.

Taking contraceptive pills or getting long-acting progestogen injections seems to be equally effective for preventing recurring pain after endometriosis surgery. Compared to taking the pill, progestogen might result in a reduced risk of needing further treatments or surgery.{{Cite journal |last1=Cooper |first1=Kevin G |last2=Bhattacharya |first2=Siladitya |last3=Daniels |first3=Jane P |last4=Cheed |first4=Versha |last5=Gennard |first5=Laura |last6=Leighton |first6=Lisa |last7=Pirie |first7=Danielle |last8=Melyda |first8=Melyda |last9=Monahan |first9=Mark |last10=Weckesser |first10=Annalise |last11=Roberts |first11=Tracy |last12=Denny |first12=Elaine |last13=Ocansey |first13=Laura |last14=Stubbs |first14=Clive |last15=Cox |first15=Emma |date=September 2024 |title=Preventing recurrence of endometriosis-related pain by means of long-acting progestogen therapy: the PRE-EMPT RCT |url=https://www.journalslibrary.nihr.ac.uk/hta/SQWY6998 |journal=Health Technology Assessment |volume=28 |issue=55 |language=en |pages=1–77 |doi=10.3310/SQWY6998 |issn=2046-4924 |pmc=11417646 |pmid=39259620 }}{{Dead link|date=June 2025 |bot=InternetArchiveBot |fix-attempted=yes }}

Clinical trials are exploring the potential benefits of cannabinoid extracts, dichloroacetic acid, and curcuma capsules.

References

{{reflist|refs=

{{cite journal |vauthors=Zondervan KT, Becker CM, Missmer SA |date=March 2020 |title=Endometriosis |journal=The New England Journal of Medicine |volume=382 |issue=13 |pages=1244–1256 |doi=10.1056/NEJMra1810764 |pmid=32212520 |s2cid=214644045}}

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