Understanding Endometriosis: What It Is and Why It Matters
Updated: Aug 25
Endometriosis is a chronic disease that affects an estimated 1 in 10 women and girls of reproductive age worldwide. It occurs when tissue similar to the lining of the uterus grows outside the uterus, where it can contribute to inflammation, scarring, adhesions, and pain. Endometriosis may affect multiple areas of the body, and symptoms and disease severity can vary significantly from person to person.
Yet endometriosis is more than a reproductive health condition. For many people, its impact can extend into work, education, relationships, mental and emotional well-being, finances, and everyday life. Despite its prevalence and potential severity, endometriosis remains widely misunderstood, underdiagnosed, and too often dismissed.
Understanding the disease is one of the first steps toward changing that.
What is Endometriosis?
Endometriosis is a chronic disease in which tissue similar to the lining of the uterus is found outside the uterus. Lesions are commonly found within the pelvic cavity, including on the ovaries, fallopian tubes, and surrounding pelvic structures, but endometriosis can also occur in other areas of the body.
These lesions can contribute to inflammation, scar tissue, adhesions, and changes within surrounding organs and tissues. Endometriosis can present very differently from one person to another, and the location or extent of disease does not always correspond with the severity of a person's symptoms.
Endometriosis by the Numbers
Global Prevalence: Endometriosis affects an estimated 10% of reproductive-age women worldwide, approximately 190 million women.
Diagnostic Delay: Timely diagnosis remains a major global challenge. WHO reports that access to early diagnosis and effective treatment is limited in many settings and specifically identifies significant diagnostic delays and inequitable access to specialized care.
Fertility: Endometriosis can affect fertility, but infertility is only one of the many possible impacts of the disease. Among women experiencing infertility, WHO estimates that 25–50% have endometriosis.
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World Health Organization — Endometriosis
These statistics are based on information from the World Health Organization and international clinical guidance on endometriosis.
Symptoms of Endometriosis
Endometriosis symptoms are not limited to menstruation. Endometriosis is a chronic disease that can affect multiple systems and areas of the body. Symptoms can occur during menstruation, throughout the menstrual cycle, or persist chronically. Some people experience severe or debilitating symptoms, others experience milder symptoms, and some may have few or no noticeable symptoms.
Common symptoms and impacts can include:
Pelvic Pain: Pelvic pain may occur during menstruation or persist beyond the menstrual cycle. For some people, pain can become chronic and significantly affect daily life.
Painful Menstruation: Severe menstrual pain can be a symptom of endometriosis and should not automatically be dismissed as a normal part of having a period.
Heavy Menstrual Bleeding: Some people with endometriosis experience heavy or prolonged menstrual bleeding.
Pain During or After Sex: Endometriosis can cause deep pelvic pain during or following sexual activity.
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Bowel and Urinary Symptoms: Painful bowel movements or urination, constipation, diarrhea, rectal pressure, and other bowel or bladder symptoms may occur with endometriosis.
Abdominal Bloating and Digestive Symptoms: Bloating, nausea, changes in bowel habits, and significant abdominal distention may occur.
Infertility or Difficulty Conceiving: Endometriosis is associated with infertility and may affect a person’s ability to conceive, although many people with endometriosis do not experience fertility problems.
Fatigue: Persistent or significant fatigue can be part of the broader impact of living with endometriosis.
Abdominal Bloating and Digestive Symptoms: Gastrointestinal symptoms such as bloating, nausea, diarrhea, and constipation may occur.
Back, Hip, Leg, or Referred Pain: Some people with endometriosis experience pain beyond the pelvis, including pain in the lower back, hips, legs, or other areas of the body.
The severity of a person’s symptoms does not necessarily reflect the extent or location of their endometriosis. Someone with extensive disease may experience relatively few symptoms, while someone with less extensive disease may experience severe, life-altering symptoms. Symptoms and disease presentation can vary significantly from person to person.
Diagnosis of Endometriosis
Diagnosis of Endometriosis
Diagnosing endometriosis can be complex. Symptoms vary significantly from person to person and may overlap with other conditions. Some people also have endometriosis without noticeable symptoms.
There is no single test that identifies every form of endometriosis. Diagnosis may involve a combination of medical history, symptoms, physical examination, imaging, and, in some cases, surgery.
Medical History and Symptoms
A healthcare provider may begin by discussing symptoms, menstrual history, pain patterns, bowel or urinary symptoms, pain during or after sex, fertility concerns, and the ways symptoms affect everyday life.
A person's experience and description of their symptoms are an important part of the diagnostic process.
Imaging
Ultrasound and MRI may be used to identify certain forms of endometriosis, including ovarian endometriomas and deep endometriosis.
However, normal or negative imaging does not necessarily rule out endometriosis. Some forms of the disease, particularly superficial endometriosis, may not be detected through current imaging methods.
Laparoscopy
Laparoscopy is a minimally invasive surgical procedure that allows a surgeon to directly examine areas where endometriosis may be present and, when appropriate, obtain tissue for examination or treat identified disease.
Laparoscopy can play an important role in diagnosis and treatment, but it is not always required before a clinical diagnosis can be made or treatment can begin. Current guidance recognizes symptoms and imaging as part of the diagnostic process.
The Diagnostic Delay
For many people, receiving an endometriosis diagnosis is not a quick or straightforward process. Symptoms may be normalized, misunderstood, attributed to other conditions, or dismissed altogether.
The World Health Organization reports that diagnosis can currently take between 4 and 12 years. Access to early diagnosis and effective treatment also remains limited in many settings.
A delayed diagnosis is more than lost time. It can mean years of unmanaged symptoms, disrupted lives, and delayed access to appropriate care.
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Treatment Options for Endometriosis
There is currently no cure for endometriosis. Treatment focuses on managing symptoms, reducing the impact of the disease, supporting quality of life, and addressing an individual's goals and needs.
Treatment is not one-size-fits-all. Options may include pain management, hormonal medications, surgery, fertility care, and multidisciplinary approaches. Treatment decisions should consider symptoms, individual preferences, potential side effects, long-term safety, cost, access to care, and whether pregnancy is desired.
Pain Management
Pain management may be part of an individual's endometriosis care plan. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or naproxen, and other analgesics may be used to help manage endometriosis-related pain. However, pain management needs vary, particularly for people living with persistent or complex pain, and may involve a multidisciplinary approach.
Pain, Stigma, and Seeking Care
For many people living with endometriosis, seeking adequate pain control comes with an additional burden: having their pain questioned, minimized, or treated with suspicion. Some patients report being perceived as exaggerating their symptoms or seeking medication when they present to healthcare providers or emergency departments with severe pain.
Seeking pain relief is not necessarily about wanting medication. For someone living with chronic or severe endometriosis pain, adequate pain control may be necessary to sleep, work, attend school, care for family, move through daily life, or simply function. Some people attempt to manage severe symptoms at home and seek emergency care only when their pain becomes unmanageable.
EEI believes that needing pain control should not result in being labeled “drug-seeking.” People living with chronic pain deserve to have their symptoms evaluated, their pain taken seriously, and their treatment needs addressed without stigma.
Hormonal Therapies
Hormonal medications may help reduce endometriosis-associated pain and other symptoms for some people. These treatments alter hormonal activity and may suppress ovulation or menstruation. Hormonal therapy can help manage symptoms, but it does not cure endometriosis.
Treatment should be individualized based on symptoms, medical history, treatment goals, potential side effects, personal preferences, and whether pregnancy is desired.
Options may include:
Combined Hormonal Contraceptives: Birth control pills, patches, or vaginal rings may be used continuously or cyclically to help reduce endometriosis-associated pain.
Progestin/Progestogen Therapies: These may include pills, injections, implants, or hormonal intrauterine devices (IUDs) and can help reduce endometriosis-associated pain.
GnRH Agonists and Antagonists: These medications suppress ovarian hormone production and may reduce endometriosis-associated pain. Because they can cause significant side effects related to low estrogen levels, treatment decisions should include discussion of risks, duration of use, and whether add-back therapy is appropriate.
Hormonal treatment is one option—not a cure and not the right choice for everyone. People living with endometriosis deserve accurate information about potential benefits, risks, side effects, and alternatives so they can participate fully in decisions about their care.
Surgery
Surgery may be considered for some people with endometriosis, particularly when symptoms are severe, other treatments have not provided adequate relief, endometriosis is affecting organs or fertility, or when surgical evaluation and treatment are appropriate based on an individual's circumstances.
Most endometriosis surgery is performed laparoscopically. During surgery, endometriosis lesions, endometriomas, adhesions, and other areas affected by the disease may be identified and treated.
Surgical approaches may include:
Excision: Endometriosis lesions are surgically cut out or removed. Excision may allow the surgeon to remove disease beneath the surface and obtain tissue for examination.
Ablation: Endometriosis lesions are destroyed or burned at the surface using heat or other forms of energy. Ablation and excision are different surgical techniques, and the appropriate approach can depend on the location and type of disease as well as the surgeon's expertise.
More complex surgery: Deep endometriosis can involve areas such as the bowel, bladder, ureters, or other structures. These cases may require surgeons with advanced endometriosis expertise and, in some circumstances, a multidisciplinary surgical team.
Surgery is a treatment for endometriosis, not a guaranteed cure. Symptoms can persist or return after surgery, and outcomes can vary considerably. Patients deserve an informed discussion about the goals of surgery, the surgeon's experience, potential benefits and risks, alternatives, fertility considerations, and the possibility of persistent or recurrent symptoms.
What About Hysterectomy?
A hysterectomy is surgery to remove the uterus. While hysterectomy may be considered as part of treatment for some people with endometriosis, particularly when other uterine conditions are also contributing to symptoms, removing the uterus does not by itself remove endometriosis located elsewhere in the body.
Endometriosis can exist on or involve structures outside the uterus, including the ovaries, bowel, bladder, pelvic lining, and other areas. For this reason, symptoms may persist or recur following hysterectomy.
A hysterectomy should not be presented as a guaranteed cure for endometriosis. Decisions about hysterectomy, and whether the ovaries are removed or preserved, should be individualized and include an informed discussion about potential benefits, risks, fertility, long-term health considerations, alternatives, and the possibility of persistent or recurrent symptoms.
Supportive Care and Symptom Management
Supportive strategies may be used alongside medical and surgical care to help some people manage symptoms and improve daily functioning. What helps can vary significantly from person to person, and these approaches do not cure endometriosis or replace appropriate medical care.
Supportive care may include:
Heat Therapy: Heating pads, hot-water bottles, or warm baths may provide temporary relief from pelvic pain and muscle cramping. Repeated or prolonged exposure to heat can damage the skin, so heat should be used carefully.
Movement and Physical Activity: Gentle movement, stretching, walking, or other forms of physical activity may help some people with pain, stiffness, mobility, or overall well-being. During severe symptoms, however, exercise may not be possible or appropriate.
Pelvic Floor Physical Therapy: Some people with endometriosis develop pelvic-floor muscle dysfunction or experience pelvic pain that may benefit from evaluation and treatment by a trained pelvic-floor physical therapist.
Nutrition: Some people report that certain foods or eating patterns affect gastrointestinal symptoms, bloating, or overall well-being. There is currently no specific diet proven to cure endometriosis, and nutritional needs and responses vary between individuals.
Rest and Pacing: Chronic pain and fatigue can make everyday activities difficult. Adjusting activity levels, taking breaks, conserving energy, and allowing the body adequate recovery time can be important parts of living with chronic symptoms.
Emotional and Mental Health Support: Living with chronic pain and an unpredictable disease can affect emotional well-being. Counseling, support groups, peer support, mindfulness, or other coping strategies may be helpful for some people. Psychological support should complement, not replace, appropriate evaluation and treatment of physical symptoms.
People living with endometriosis should not be made to feel that persistent symptoms are the result of failing to exercise enough, eat correctly, reduce stress, or maintain a particular lifestyle. Supportive care can be valuable, but the responsibility for managing a complex chronic disease should not be placed solely on the patient.
Heat Therapy and Erythema Ab Igne
Heat therapy is commonly used by people living with endometriosis to help manage pelvic pain, cramping, muscle tension, and other painful symptoms. Heating pads, hot-water bottles, heated wraps, and warm baths may provide temporary relief when other methods of pain control are unavailable, ineffective, or insufficient.
For some people living with persistent pain, however, heat is not used occasionally. It may become part of daily life. Repeated or prolonged exposure to heat can lead to a skin condition called erythema ab igne (EAI), sometimes referred to as “toasted skin syndrome.” It can appear as a red, brown, or net-like pattern of discoloration on areas of the body repeatedly exposed to heat.
For people with endometriosis, these marks may appear on the abdomen, pelvis, lower back, or other areas where heat is repeatedly applied for pain relief.
These marks tell a larger story. They can be physical evidence of the extraordinary measures people living with chronic pain may use simply to function. While endometriosis is often described as an “invisible illness,” for some, years of managing its pain can leave visible marks on the body.
Awareness Is Only the Beginning
Awareness of endometriosis matters, but awareness alone does not change outcomes. People must be able to recognize symptoms, access knowledgeable healthcare providers, receive timely evaluation, participate in informed treatment decisions, and have their reports of pain taken seriously.
Endometriosis can affect far more than physical health. Persistent symptoms may disrupt education, employment, finances, relationships, fertility, mental well-being, family responsibilities, and a person's ability to participate fully in everyday life. Support therefore cannot end with simply knowing that endometriosis exists.
Meaningful awareness should lead to action: earlier recognition, better education, equitable access to care, informed healthcare providers, stronger support systems, and investment in research that reflects the diverse populations affected by this disease.
Advocacy and Resources
Advocacy can occur at many levels—from helping an individual communicate their needs in a medical setting to addressing larger barriers within healthcare systems, workplaces, schools, communities, research, and public policy.
People living with endometriosis may benefit from reliable educational resources, peer and community support, patient advocacy, workplace or educational accommodations, and assistance navigating healthcare. However, resources are only meaningful when people can actually access them.
Availability is not the same as accessibility. A specialist, treatment, support program, or educational resource cannot close a gap if the people who need it cannot realistically reach, afford, understand, or use it.
Personal Stories
Statistics help us understand the scale of endometriosis. Stories help us understand its human cost.
Sharing lived experiences can challenge misconceptions, reduce isolation, expose gaps in healthcare, and help others recognize experiences they may have struggled to name. Patient stories can also reveal realities that clinical data alone may not fully capture—from years spent seeking a diagnosis to the consequences of untreated pain, medical dismissal, financial barriers, disrupted relationships, and changes in work, education, and everyday life.
People living with endometriosis are not simply patients within a healthcare system. They are experts in the experience of living in their own bodies, and their voices should help shape the conversations, research, policies, and systems intended to serve them.
Where Awareness Must Lead
Awareness is only the beginning.
Understanding endometriosis matters, but awareness alone does not shorten the path to diagnosis, make knowledgeable care accessible, remove financial barriers, ensure that pain is taken seriously, or protect people from the consequences of living with a chronic disease that can affect nearly every area of life.
Progress requires moving beyond simply knowing that endometriosis exists. It requires better education for healthcare professionals, earlier recognition of symptoms, equitable access to appropriate care, continued research, informed treatment decisions, supportive workplaces and schools, and healthcare systems that listen to the people they are intended to serve.
For too many people, appropriate endometriosis care may exist somewhere, but remains out of reach because of geography, cost, insurance, transportation, provider availability, or other barriers.
Availability is not accessibility.
At the Endometriosis Equity Initiative, we believe meaningful change happens when education leads to understanding, understanding leads to action, and action leads to systems that better serve people living with endometriosis.
The goal is not simply greater awareness of endometriosis. The goal is a world in which being diagnosed with endometriosis does not determine how much of your life you are able to live.
Sources & Further Reading
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