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, anywhere throughout the body, including the lungs.

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. Endometriosis research is incredibly underfunded, so it is not understood what causes it, and there is currently no cure.

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

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

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 limitations of current diagnostic tools, continued and historical underinvestment in women’s health research, longstanding disparities in how female-bodied patients’ pain has been recognized and treated, and continued lack of awareness about the disease.

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, and surgery. Ultrasound and MRI can identify certain forms of endometriosis. Still, it 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 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 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. 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).

  • Excision surgery

  • Pain management

  • Pelvic floor physical therapy

  • Anti-inflammatory lifestyle and nutritional support.

  • Supplements and alternative medicine

Endometriosis rarely exists in isolation. Many people also live with co-occurring conditions such as gut dysbiosis, MCAS, H-EDS, POTS, autoimmune diseases, nutritional deficiencies, pelvic floor dysfunction, and chronic infections. These conditions can add to the body’s inflammatory and immune burden, making symptoms more difficult to manage and reducing the body’s ability to recover and maintain healthy function. Although treating these conditions does not cure endometriosis, identifying and addressing them may reduce overall inflammation and support the body’s natural healing and recovery processes as part of a comprehensive treatment plan.

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.