Key facts
- Endometriosis affects an estimated 10% (190 million) of reproductive age women worldwide.
- Endometriosis is a chronic disease and symptoms include: severe pain during menstruation; heavy menstrual bleeding; chronic pelvic pain (pain that does not go away when the menstrual cycle ends); infertility; and abdominal bloating and nausea.
- Endometriosis most commonly occurs in the pelvis but in some women, occurs elsewhere in the body, including the abdomen and chest.
- Endometriosis can impact sexual intercourse, bowel movements and/or urination; and mental health (including depression and anxiety).
- There is currently no cure for endometriosis; access to early diagnosis and effective treatment of endometriosis is limited in many settings and treatment aims to control symptoms and limit long-term impacts.
Overview
Endometriosis is a complex disease that affects many women, globally from the onset of their first period (menarche) through menopause, regardless of ethnic origin or social status. Endometriosis can also affect transgender men and non-binary individuals who menstruate. In women with endometriosis, endometrium-like tissue (usually found only in the lining of the uterus) grows outside the uterus, causing inflammation and scar tissue formation.
There is currently no known cure, but endometriosis symptoms can be treated with medicines or, in some women, surgery.
Endometriosis is diagnosed using imaging techniques such as ultrasound. Invasive procedures like surgery may also be necessary to confirm the diagnosis. Long delays in diagnosis are common, and symptoms often persist or recur after treatment is initiated.
Causes
The causes of endometriosis are unknown.
Emerging research suggests that endometriosis is associated with immune system dysregulation. People with endometriosis have higher rates of other immune-mediated conditions, such as lupus, multiple sclerosis, and inflammatory bowel disease, and a family history of endometriosis .
Diagnosis
Symptoms in individuals with endometriosis are variable and broad, meaning that health and care workers may not easily diagnose it. Individuals with symptoms may not be aware of the condition while there are those with endometriosis who are asymptomatic. Access to early diagnosis and effective treatment of endometriosis is limited in many settings, including in low- and middle-income countries. Currently, the average time to diagnosis is between 4 and 12 years.
A careful menstrual health history including pain, heaviness of bleeding, and associated symptoms can help with diagnosis of endometriosis.
Laparoscopic surgery, when the endometrial tissue may be directly visualized or tissue samples removed during surgery can be examined can be recommended, but is a procedure which is inaccessible to many women. A clinical diagnosis of endometriosis may also be made on the basis of women’s symptoms and imaging tests such as ultrasound or MRI, and surgery is not necessarily required before initiating treatment.
New and emerging diagnostic tests aimed at identifying endometriosis earlier include simple symptom checklists, blood tests, and increasingly self-tests using saliva or menstrual blood.
Treatment
There are no existing treatments that definitively cure the disease. Instead, treatments are based on severity, individual preferences, side effects, long-term safety, costs and availability, and whether pregnancy is desired.
Some medications can help manage endometriosis and its symptoms, including:
- non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen and other analgesics (pain killers) are often used to treat pain;
- hormonal medicines may also reduce pain severity and/or frequency in some women. These methods include:
- combined hormonal contraceptives (pill, patch, ring);
- progestins (hormonal IUD, DMPA); and
- GnRH analogues.
Other hormonal modulators include aromatase inhibitors. However, some of these methods may not be suitable for women who want to get pregnant.
Surgical treatment can remove endometriosis lesions, adhesions, and scar tissue. Hysterectomy (surgical removal of the uterus), usually with the removal of the ovaries, may be considered for individuals who do not respond to other treatments and are not planning to have a child. However, hysterectomy is not a cure, and some patients have symptoms that remain.
Success in reducing pain symptoms and increasing pregnancy rates through surgery are often dependent on the extent of disease. In addition, lesions may recur even after successful eradication, and pelvic floor muscle abnormalities can contribute to chronic pelvic pain.
Fertility treatments including ovulation induction, intrauterine insemination (IUI), or in vitro fertilization (IVF) may be recommended for individuals struggling to conceive due to endometriosis.
In addition to talking to their doctor, people affected by endometriosis may find additional advice and emotional assistance in local patient support groups. Multidisciplinary pain management approaches, including physiotherapy and cognitive behavioral therapy (CBT), can also help to reduce endometriosis-related pain and improve quality of life. These therapies target both physical symptoms and the emotional burden associated with the disease.
Some treatments are associated with side effects, and endometriosis-related symptoms can sometimes reappear after therapy ends. The choice of treatment depends on effectiveness in the individual, adverse side effects, long-term safety, costs, and availability.
Impact
Endometriosis has significant health, social and economic implications. Severe pain, heavy menstrual bleeding, fatigue, depression, anxiety, infertility, poor sexual health and social isolation can dramatically reduce quality of life.
Endometriosis is associated with infertility globally. Amongst women with infertility, as many as 25-50% have endometriosis. Heavy menstrual bleeding from endometriosis can contribute to iron deficiency and fatigue. Painful sex due to endometriosis can lead to interruption or avoidance of intercourse and impact the sexual health of affected individuals and their partners.
Some individuals with endometriosis experience debilitating pain or other symptoms that prevent them from going to work or school. This can cause lost income for individuals and their families and incur costs to society. Treatments often require out-of-pocket costs, adding financial strain to individuals affected by endometriosis.
These impacts are made worse by stigma and social beliefs that often ignore or downplay period pain.
Prevention
At present, there is no known way to prevent endometriosis. Enhanced awareness, early diagnosis and quality health care may slow or halt the progression of the disease and reduce long-term symptoms, including possibly the risk of central nervous system pain sensitization. Currently there is no cure.
Challenges and priorities
In many countries, the general public, family members and most health and care workers are not aware that the chronic pelvic pain people affected by endometriosis face is not normal. Normalization and stigmatization of pain and other symptoms negatively affect the mental health and well-being of people affected by endometriosis.
In low and middle-income countries, there is a lack of multi-disciplinary teams with the wide range of skills and equipment needed for the early diagnosis and effective treatment of endometriosis. In addition, many knowledge gaps exist, and there is need for non-invasive diagnostic methods as well as medical treatments that do not prevent pregnancy.
Addressing these issues is the current focus of endometriosis response.
WHO response
The World Health Organization recognizes the importance of endometriosis and its impact on people’s sexual and reproductive health and rights, quality of life and overall well-being. WHO aims to develop global normative guidance and tools to support the adoption of effective policies and interventions to address endometriosis globally, including in low- and middle-income countries, and for affected individuals from underserved communities.
WHO is partnering with multiple stakeholders, including academic institutions, non-State actors and other organizations that are actively involved in research to identify effective models of endometriosis prevention, diagnosis, treatment, and care.