Endometriosis

Our mission is to provide evidence-informed education, connect individuals with trusted specialists and resources, and help people better understand their options for diagnosis, treatment, and long-term management.

Knowledge is one of the most powerful tools in navigating endometriosis. We hope this resource helps you better understand the disease and advocate for the care you deserve.

What Is Endometriosis?

Endometriosis is a chronic inflammatory disease in which tissue similar to the lining of the uterus grows outside the uterus. These growths, called endometriosis lesions, can develop on the ovaries, pelvic lining, bowel, bladder, diaphragm, and, in some cases, throughout the body, including the lungs.

What Endometriosis Is and Isn’t

  • Not the Uterine Lining: Despite its name, endometriosis is not the uterine lining growing outside the uterus. The lining inside the uterus is called the endometrium.

  • Biologically Distinct: Endometriosis lesions are biologically different. They create inflammation, grow their own nerves, develop their own blood supply, interact with surrounding nerves and immune cells, and can lead to scarring and adhesions.

  • Multifactorial Roots: Researchers believe endometriosis develops through a combination of genetic, hormonal, immune, inflammatory, and environmental factors. No single theory explains every case.

A Whole-Body Disease

Endometriosis is more than a reproductive condition. It is now understood to involve the immune system, inflammatory pathways, hormones, and the nervous system, which helps explain why symptoms often extend beyond pain where the lesions exist.

Importantly, endometriosis can occur anywhere in the body. When lesions are present in a specific area, they can cause symptoms that reflect that location:

  • Bladder lesions may contribute to urinary symptoms.

  • Bowel lesions may lead to digestive symptoms.

  • Distant sites such as the lungs, skin, or surgical scars can produce localized symptoms in those specific areas.

Global Impact: Approximately 1 in 10 female-bodied individuals of reproductive age an estimated 190 million people worldwide, live with endometriosis.

Common Symptoms

Symptoms vary widely and do not always reflect the amount of disease present. Pain associated with endometriosis can be severe and disabling, and in many cases is reported to be more intense than childbirth. Chronic pelvic pain conditions, including endometriosis, are recognized among the top 20 most painful medical conditions, highlighting the significant impact this disease can have on quality of life.

The Symptom Checklist

  • Painful periods

  • Chronic pelvic pain

  • Pain with ovulation

  • Pain during or after sex

  • Painful bowel movements or urination

  • Heavy or irregular bleeding

  • Bloating (“endo belly”)

  • Fatigue and brain fog

  • Nausea

  • Lower back, hip, or leg pain

  • Constipation, diarrhea, or IBS-like symptoms

  • Infertility

  • Symptoms of PMDD (Premenstrual Dysphoric Disorder)

  • “Period flu” (flu-like symptoms around menstruation and ovulation, including body aches, chills, and fatigue)

In addition, many individuals living with endometriosis experience chronic systemic inflammation, which can contribute to widespread symptoms such as fatigue, brain fog, and generalized body pain.

Why Diagnosis Often Takes Years

The average diagnostic delay for endometriosis is 7–10 years in many healthcare systems. This delay is influenced by several factors, including the complexity of the disease, limitations of current diagnostic tools, continued and historical underinvestment in women’s health research, and longstanding disparities in how female-bodied patients’ pain has been recognized and treated.

The Gender Research Gap

Historically, medical research focused primarily on male biology. Although women were required to be included in NIH-funded clinical research beginning in 1993, it was not until 2016 that the National Institutes of Health required researchers to account for sex as a biological variable throughout NIH-funded research, recognizing that findings based primarily on male biology do not always apply to female biology.

As a result of this systemic bias, female-bodied patients are more likely to have chronic pain minimized, attributed to psychological causes, or experience longer delays before receiving appropriate diagnosis and treatment. Many people with endometriosis are routinely told that:

  • Severe period pain is normal.

  • Their symptoms are caused by stress or anxiety.

  • They have irritable bowel syndrome or another gastrointestinal condition.

  • Their imaging is normal, so nothing is wrong.

Diagnostic Fact: There is currently no blood test that can diagnose endometriosis. Diagnosis is based on symptoms, medical history, physical examination, imaging when appropriate, and sometimes surgery. Ultrasound and MRI can identify certain forms of endometriosis, but they cannot detect every lesion. Endometriosis does not show up on most imaging studies, meaning a normal ultrasound, MRI, or CT does not rule out the disease.

The Reality of Endometriosis: A Multi-Billion Dollar Crisis

The severe underfunding of endometriosis is a catastrophic public health failure that leaves millions to suffer in silence. Despite its massive global scale, this debilitating condition is met with a massive, systemic gender gap in research and funding. Endometriosis inflicts an annual economic burden of $119 billion in the U.S. alone, yet it receives only a microscopic fraction of global health research budgets.

To put this neglect into perspective, federal agencies allocate a mere $4.30 per patient annually to endometriosis, compared to over $130 per patient for other chronic conditions with far lower patient populations [https://endofound.org]. This institutional neglect forces patients into a "diagnostic desert," leaving doctors with little understanding of how to treat it outside of birth control and surgery. It is time to stop normalizing this suffering and demand the research funding that millions of people rightfully deserve.

Treatment & Surgical Options

Treatment depends on symptoms, disease location, and individual goals. Common treatment options include:

Hormonal birth control & Progesterone therapy (Note: Hormonal therapies may reduce symptoms for some by suppressing ovulation or menstruation, but they do not remove existing endometriosis lesions or treat the disease).

  • Pain management

  • Pelvic floor physical therapy

  • Anti-inflammatory lifestyle and nutritional support.

  • Excision surgery

  • Fertility treatment when needed

  • Supplements and alternative medicine

    *In many cases, gut dysbiosis, chronic low-grade infections, or untreated co-occurring conditions can majorly contribute to endometriosis. It’s important to explore your health in depth to understand your unique cocktail of contributors. Seeking out trusted providers in the fields of Functional Medicine, Naturopathic Medicine, and Chinese Medicine can be greatly beneficial to treatment.

Excision vs. Ablation Surgery

If surgery is recommended, it is vital to understand the type of surgery being offered:

Excision Surgery (The Gold Standard): This involves carefully cutting out and removing endometriosis lesions from the root. Tissue can then be examined by a pathologist. Endometriosis specialists believe this approach offers the most complete treatment of the disease. Excision specialists are highly recommended over going to a gynecological surgeon. Advanced training and expertise are vital in having the best chance of fully removing lesions, and causing as little harm to other structures and organs involved as possible. Sometimes organ removal or partial organ removal is also needed. Excision specialists pair with other surgeons depending on the location of the lesions in these cases.

Ablation Surgery: This destroys the surface of visible lesions using heat or energy. Many excision specialists believe ablation can be inadequate or even harmful because it may leave deeper disease behind while creating additional scar tissue.

Why is ablation still common? Ablation is still much more commonly performed in general gynecology because it is technically easier to learn, faster to perform, and more widely reimbursed within current healthcare systems. Few gynecologic surgeons have advanced training in excision surgery, and outcomes can vary significantly depending on surgical expertise.

There is ongoing advocacy and policy work aimed at improving standards of care, including efforts to ensure that excision surgery is properly covered by insurance and that surgeons receive comprehensive, specialized training.

Common Co-Occurring Conditions

Endometriosis rarely acts alone, frequently co-occurring with other chronic medical conditions. Comprehensive clinical evaluations are vital; identifying and treating these companion conditions is essential to successfully managing the full scope of endometriosis symptoms.

Pelvic and Uterine Pathologies

  • Adenomyosis: This sister condition occurs when endometrial-like tissue grows directly into the muscular wall of the uterus, multiplying severe cramping and causing heavy, prolonged menstrual bleeding.

  • Pelvic Congestion Syndrome: Vascular compressions such as May-Thurner Syndrome (MTS) cause blood to pool in the pelvic veins, resulting in a deep, dull ache that mimics or worsens endometriosis pain.

  • Pelvic Floor Dysfunction (PFD): Chronic pelvic pain causes the muscles of the pelvic floor to become hypertonic (hyper-tight), leading to painful intercourse, difficulty urinating, and localized muscle spasms.

Gastrointestinal and Urological Disorders

  • Gut Dysbiosis and Leaky Gut: Imbalances in gut bacteria and compromised intestinal linings can trigger systemic inflammation, often presenting as severe bloating, gas, and altered bowel motility.

  • Interstitial Cystitis (IC): Also known as painful bladder syndrome, IC causes intense bladder pressure, chronic pelvic pain, and frequent urinary urgency.

Systemic, Immunological, and Neurological Syndromes

  • Autoimmune Conditions: Endometriosis shares elevated systemic inflammatory pathways with autoimmune diseases, increasing co-occurring risks for Hashimoto’s thyroiditis, celiac disease, lupus, and rheumatoid arthritis.

  • Ehlers-Danlos Syndrome (EDS): This genetic connective tissue disorder causes joint hypermobility and tissue fragility, which can alter pelvic support structures and exacerbate chronic musculoskeletal pain.

  • Postural Orthostatic Tachycardia Syndrome (POTS): A form of dysautonomia where heart rates spike abnormally upon standing, commonly causing dizziness, fainting, and severe brain fog.

  • Mast Cell Activation Syndrome (MCAS): In MCAS, mast cells inappropriately release excessive chemical mediators, triggering widespread allergic-like reactions, systemic pain, and neuro-inflammation.

  • Migraines: Recurrent, debilitating headaches frequently overlap with endometriosis, potentially driven by shared hormonal fluctuations and systemic inflammation.

  • Chronic Fatigue & "Period Flu": Profound physical exhaustion frequently limits daily functioning, often peaking during menstruation as cyclical "period flu" symptom patterns (low-grade fevers, body aches, and immune system crashes).

  • Chronic Low-Grade Infections: Hidden, low-grade bacterial, fungal, or viral infections can act as persistent drivers of immune dysfunction. These are often uniquely investigated via functional medicine or naturopathic diagnostics.

Neuropsychiatric and Nervous System

  • PTSD and Complex PTSD (C-PTSD): The trauma of living with a chronic, poorly understood disease combined with systemic diagnostic delays can deeply impact and over-activate the nervous system. Having a history of trauma can also impact endometriosis. Also, many of the other common co-occurring conditions cause nervous system dysregulation when untreated, which interferes with the body’s ability to self-heal by impacting the immune system and hormones, and the body’s ability to function through all connecting systems.

    • Sexual Abuse and Pelvic Trauma: Female-bodied people who have experienced sexual abuse in childhood or adolescence are 79% more likely to be diagnosed with endometriosis.

  • PMDD (Premenstrual Dysphoric Disorder): A severe, sometimes disabling extension of premenstrual syndrome (PMS) that causes extreme emotional shifts, severe anxiety, and depression in the weeks leading up to menstruation.Common Co-Occurring Conditions

Endometriosis rarely acts alone, frequently co-occurring with other chronic medical conditions. Comprehensive clinical evaluations are vital; identifying and treating these companion conditions is essential to successfully managing the full scope of endometriosis.

Myths vs. Facts

  • Myth: Severe period pain is normal.

  • Fact: Pain that interferes with daily life should be evaluated and addressed.

  • Myth: A normal ultrasound means you don’t have endometriosis.

  • Fact: Many lesions cannot be seen on imaging, and endometriosis does not show up on most imaging studies.

  • Myth: Birth control cures endometriosis.

  • Fact: Hormonal therapy may help manage symptoms but does not remove endometriosis.

  • Myth: Pregnancy or hysterectomy cures endometriosis.

  • Fact: Neither is considered a cure for endometriosis. It is a complex disease, more than the lesions it produces.

  • Myth: More pain means more disease.

  • Fact: Disease severity and pain severity do not always correlate.

When to Seek Specialized Care

  • Consider evaluation by an endometriosis specialist if you have:

  • Persistent pelvic pain or symptoms that continue despite treatment.

  • Bowel, bladder, diaphragm, or chest symptoms.

  • Previous surgery with ongoing symptoms.

  • Difficulty becoming pregnant.

  • Suspected deep infiltrating or extra-pelvic endometriosis.