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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. It occurs in humans and a limited number of other menstruating mammals. Endometrial tissue most often grows on or around reproductive organs such as the ovaries and , 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. 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, while for some it can be a debilitating disease. Common symptoms include pelvic pain, heavy and Dysmenorrhea, pain with bowel movements, Dysuria, Dyspareunia, and infertility. 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.
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.
Worldwide, around 10% of the female population of reproductive age (190 million women) are affected by endometriosis. Ethnic differences have been observed in endometriosis, as and East Asian women are significantly more likely than White people 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. 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. 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, leaving no samples for biopsy to confirm endometriosis.
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. 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.
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.
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 or pleura. Manifestations of this include hemoptysis, a pneumothorax, or hemothorax. Endometriosis may also affect the nearby colon, which in rare situations may progress to partial obstruction, requiring emergency surgery.
Stress may be a contributing factor or a consequence of endometriosis.
Ovarian endometriosis may complicate pregnancy through decidualization, abscess formation, and/or rupture.
Thoracic endometriosis can be associated with recurrent thoracic endometriosis syndrome which manifests during menstrual periods. It includes Uterine cycle pneumothorax in 73% of women, catamenial hemothorax in 14%, catamenial hemoptysis in 7%, and pulmonary nodules in 6%.
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.
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%.
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.
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.
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.
Endometriosis can also impact a woman's fetus or neonate, increasing the risks for congenital malformations, Preterm birth, and higher neonatal death rates.
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.
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. 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 mutation or Heritability.
A 2019 genome-wide association study (GWAS) review enumerated 36 genes with mutations associated with endometriosis development. Nine chromosome loci were robustly replicated:
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.
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, fetuses, and prepubescent girls. Further theoretical additions are needed to complement the retrograde menstruation theory to explain why cases of endometriosis show up in the brain and lungs.
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, allergy reactions, and the impact of toxic materials. 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.
Endometriotic lesions differ in their biochemistry, hormonal response, immunology, and inflammatory response compared to the endometrium. 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 . 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.
The theory of retrograde menstruation as a cause of endometriosis was first proposed by John A. Sampson.
Rectovaginal or bowel endometriosis affects approximately 5-12% of those with endometriosis and can cause severe pain with bowel movements.
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.
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. Pulmonary endometriosis can be associated with a thoracic endometriosis syndrome that can include Uterine cycle (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%.
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, histology 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. 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.
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.
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 diagnosis 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. Early endometriosis typically occurs on the surfaces of organs in the pelvic and intra-abdominal areas. 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 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.
Stage I (Minimal)
In 2010, essentially all proposed biomarkers for endometriosis were of unclear medical use, although some appear to be promising. 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. 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. 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.
MicroRNAs have the potential to be used in diagnostic and therapeutic decisions.
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.
In most cases, the symptoms disappear or improve with menopause (natural or surgical). 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.
Pharmacotherapy for pain management can be initiated based on the presence of symptoms, examination, and ultrasound findings that rule out other potential causes.
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".
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.
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. [3]
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.
Endometriosis recurrence following conservative surgery is estimated as 21.5% at 2 years and 40–50% at 5 years.
The recurrence rate for DIE after surgery is less than 1%.
Manual physical therapy's effectiveness in treating endometriosis is unclear.
The advantages of physical therapy techniques are decreased cost, absence of major side effects, it does not interfere with fertility, and a near-universal increase in sexual function. Disadvantages are that there are no large or long-term studies of its use for treating pain or infertility related to 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.
Ethnic differences in endometriosis have been observed. The condition is more common in women of East Asian and descent than in White women. Risk factors include having a family history of the condition. "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 . 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). 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. 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. Incidences of endometriosis have occurred in postmenopausal individuals, and in less common cases, individuals may have had endometriosis symptoms before they even reach menarche.
The rate of recurrence of endometriosis is estimated to be 40-50% for adults over five years. 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.
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 surgery and included oophorectomy (removal of the ovaries) and hysterectomy (removal of the uterus). In the 1940s, the only available hormonal therapies for endometriosis were high-dose testosterone and high-dose estrogen therapy. High-dose estrogen therapy with diethylstilbestrol for endometriosis was first reported by Karnaky in 1948 and was the main medication treatment for the condition in the early 1950s. 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, 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.
Costs vary greatly between countries. 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". 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." 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.
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.
Clinical trials are exploring the potential benefits of cannabinoid extracts, dichloroacetic acid, and curcuma capsules.
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.
Other
Bowel endometriosis may include symptoms like diarrhea, constipation, Rectal 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. Endometriosis is associated with certain types of cancers, notably some types of ovarian cancer, non-Hodgkin's lymphoma and brain cancer. Endometriosis is however unrelated to endometrial cancer.
Complications
Physical health
Complications of endometriosis include internal scarring, adhesions, pelvic , ovarian Endometrioma, ruptured cysts, and bowel and ureter obstruction resulting from pelvic adhesions. Endometriosis-associated infertility may result from scar formation and anatomical distortions caused by the condition.
Mental health
"Endometriosis is associated with an elevated risk of developing depression and anxiety disorders". Studies suggest this is partially due to the pelvic pain experienced by endometriosis patients.
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 Genetic disorder influenced by both genetic and environmental factors, a genetic disorder of polygenic/multifactorial inheritance 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). Endometriosis, eMedicine. Individuals with an affected first-degree relative have an approximate six-fold increase incidence of endometriosis.
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 .
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 receptor Endothelium proliferation, survival, migration, tubular morphogenesis and sprouting 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
Environmental toxins
Some factors associated with endometriosis include:
(2025). 9783030518554 ISBN 9783030518554
Pathophysiology
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 , and surgical transplantation, which were postulated as early as 1870. Each is further described below.
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 menstruation, some of the endometrial debris flow backward through the fallopian tubes and into the peritoneal cavity, attaching itself to the peritoneum (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.
Other theories
Localization
Most often, endometriosis is found on the:
Less common pelvic sites are:
Extrapelvic endometriosis
Rarely, endometriosis appears in extrapelvic parts of the body, such as the lungs, brain, and skin. 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.
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.
Laparoscopy
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. Laparoscopy is not an applicable test for extrapelvic sites such as umbilicus, hernia sacs, abdominal wall, lung, or kidneys.
Ultrasound
Vaginal ultrasound can be used to diagnose endometriosis or to localize an endometrioma before surgery. 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. 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. 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.
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). 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. 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 II (Mild)
Stage III (Moderate)
Stage IV (Severe)
Markers
An area of research is the search for endometriosis biomarker.
Histopathology
For a histopathological diagnosis, at least two of the following three criteria should be present:
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.
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.
Management
While there is no cure for endometriosis, there are treatments for pain and endometriosis-associated infertility. Pain can be treated with hormones, painkillers, or, in severe cases, surgery.
Surgery
Based on strong evidence, experts recommend that surgery be performed laparoscopically (through keyhole surgery) rather than open. 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. (1999). 9780683303797, Lippincott Willimas Wilkins. ISBN 9780683303797 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. Many endometriosis specialists believe that excision is the ideal surgical method to treat endometriosis. A 2017 literature review found that excision improved some outcomes over ablation. 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.
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. 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.
Risks and safety of pelvic surgery
The risk of developing complications following surgery depends on the type of lesion that has undergone surgery. 55% to 100% of individuals develop adhesions following pelvic surgery, 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. Removal of cysts on the ovary without removing the ovary is a safe procedure.
Hormonal medications
Other medicines
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. 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. Cohort studies indicate that surgery is effective in decreasing pain. Most complications occurred in cases of low intestinal anastomosis, while the 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.
Treatment of infertility
Surgery is more effective than medical 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. In vitro fertilization (IVF) procedures are effective in improving fertility in many individuals with endometriosis.
Epidemiology
Determining how many people have endometriosis is challenging because a definitive diagnosis requires surgical visualization through laparoscopic surgery. 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.
Discovery
Endometriosis was first discovered microscopically by Karl von Rokitansky in 1860, (2025). 9780857295859, Springer. ISBN 9780857295859 although the earliest antecedents may have stemmed from concepts published almost 4,000 years ago. The Hippocratic Corpus outlines symptoms similar to endometriosis, including uterine ulcers, adhesions, and infertility. Historically, women with these symptoms were treated with , , bloodletting, chemical , 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.
Society and culture
Public figures
Several public figures have spoken about their experience with endometriosis, including:
Economic burden
The economic burden of endometriosis is widespread and multifaceted. 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.
Medical culture
There are many barriers that those affected face in receiving a 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. 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. 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. 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. Healthcare providers are also likely to dismiss described symptoms as normal menstruation. 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.
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. 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. Additionally, menstrual stigma significantly contributes to the broader issue of endometriosis stigma, creating an interconnected challenge that extends beyond reproductive health.
Widespread awareness campaigns, developments, and implementations aimed at 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.
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.
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