Endometriosis Overview

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Since there is so much misinformation on endometriosis, I’ve written out this very basic overview. For more detailed information on endometriosis, check out the other pages in the menu.

What is it?

Endometriosis can make its own estrogen via the aromatase enzyme, which means that even if you take hormone treatments which put you into medical menopause, endometriosis can still make its own estrogen.

Endometriosis doesn’t just affect reproductive organs – it can be found in other body locations as well, such as the intestines, bladder, lung, or diaphragm. This is called extra pelvic endometriosis.

Definition

Endometriosis is tissue similar to the endometrium (the uterine lining) but is NOT the endometrium, despite what many misinformed websites and even doctors say! Getting the definition correct is crucial for disease understanding and treatment.

“Endometriosis is a systemic, inflammatory disease characterized by the presence of endometrial-like tissue found in extrauterine sites.” (Kennedy S. et al., 2005; Klemmt et al., 2018; Saunders et al., 2021)

The definition is one of the biggest pain points for endometriosis advocates, because it’s often incorrect on websites and even in research papers. As the paper An international terminology for endometriosis, 2021 says:

“Different definitions are used for endometriosis, endometriosis subtypes, treatments and outcomes. This has significant consequences for research and clinical practice. The current paper is prepared by an international group of experts and lists a number of terms used in endometriosis, with a relevant and appropriate definition. Endometriosis is defined as an inflammatory disease process characterized at surgery by the presence of endometrium-like epithelium and/or stroma outside the endometrium and myometrium, usually with an associated inflammatory process. These definitions should result in harmonisation both in endometriosis research and in clinical practice.” (1)

Overview

Here is a quick overview from the Center for Endometriosis article About Endometroisis:

“A spectrum disease with a variety of subtypes and clinical presentations, endometriosis is often characterized by pain, inflammation, infertility, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), GI and other organ dysfunction, and more (Mariadas, et al., 2025; Int’l Endometriosis Working Group, 2021). Alterations in certain biological processes of the endocrine and immune systems have also been observed with the disease, and the condition is embodied by a complexity of multiple immunologic abnormalities, endocrine alterations and unusual expression of adhesion molecules. In the simplest of terms, this means that tissue somewhat resembling the native endometrium is found elsewhere in the body, where it triggers a cascade of reactions and symptoms.” [Center for Endometriosis article About Endometroisis]

What causes it?

While it’s commonly said that endometriosis is caused by retrograde menstruation, in reality that theory has never been proven and there are so many flaws with that theory that it’s actually impossible that it be the main cause of endometriosis. No one knows what causes endometriosis, but there are likely multiple factors and we are likely born with it.

Who gets it?

Endometriosis affects 190 million people worldwide.

Endometriosis affects people of all genders and sexes, including cis-women, non-binary people, trans people, gender non-conforming people, intersex people, and cis-men. Endometriosis has also been found in animals, even ones that don’t menstruate!

Endometriosis isn’t a “white women’s disease”. Historically, it was white women who were able to get diagnosed due to their privilege and medical access. Also, because of racism and bias, endometriosis has been historically under-diagnosed and misdiagnosed as other conditions (fibroids, pelvic inflammatory disease) in Black people and people of color. Unfortunately, some outdated websites continue to promote the misinformation that being white is a risk factor for endometriosis, which delays diagnosis for people who are not white.

Teens, premenarchal, and postmenopausal people can have endometriosis. You can have endometriosis post-hysterectomy.

Diagnosis

Advanced imaging or an endometriosis mapping done by an expert* can often detect endometriomas, deep endometriosis, or other signs that give high suspicion of endometriosis. However, you can have a negative ultrasound or MRI and still have endometriosis. Almost all imaging done for endometriosis is not advanced imaging (even if the clinic calls it that) and misses obvious signs of endometriosis. Advanced imaging takes longer, looks at more organs and their relationship via a specific protocol, is done by an expert in endometriosis imaging, and the patient does an intestinal preparation before the ultrasound.

The patient history/symptoms is an important part of making a suspected diagnosis of the disease.

There’s still no reliable blood test, biomarker tests, saliva tests, EEG tests, etc to diagnose endometriosis in large populations.

Surgery can provide a biopsy with a pathology report confirming endo, but any diagnostic laparoscopy should also include treatment via excision during the same surgery.

Medical gaslighting is common, and it still takes an average of 8-10 years to diagnose this incredibly common disease.

What treats it?

People manage their endometriosis in different ways. There is no best treatment or one size treatment for everyone. Because endometriosis is a complex inflammatory condition that can affect the full body, people typically need a multidisciplinary approach. This commonly includes: 

• dietary and lifestyle changes
• excision surgery
• hormonal medication
• pelvic floor therapy
• treating common co-conditions

There are 2 types of surgery: ablation (superficial burning of endometriosis lesions) and excision (cutting out the lesions at the root). Most gynecologists do ablation surgery, but this surgery is not recommended by patient advocates or experts due to poor outcomes. It takes special training and a high level of skill to do excision, and there are probably less than 500 excision surgeons worldwide. With excision, many people find that their pain significantly reduces and their quality of life improves. However, there are no guarantees, and people see best results when combining excision with a multidisciplinary approach. With excision, there is a also a chance that the endometriosis lesions come back (recur), and there’s different percentage rates of recurrence depending on the study and the surgeon.

Birth controls, progestins, and GnRh drugs (medical menopause) are commonly prescribed for symptom management, but they don’t remove existing lesions, and endometriosis can still progress while on them. Some have a risk of bone mineral density loss and other serious side effects. There is no best hormone – the best one for you (should you decide to use them) will be what helps you with minimal side effects and is available and affordable to you. Hormones are not your only tool for symptom management and you don’t have to take them if you don’t want to.

Hysterectomy and pregnancy don’t treat endometriosis. In some instances, a hysterectomy can help people if their pain is actually because of problems originating in their uterus, such as adenomyosis. The role of a hysterectomy is on a case-by-case basis that would need to be discussed in depth with an experienced endometriosis surgeon – not just any gynecologist.

Does endometriosis have a cure?

Endometriosis has no cure, but there’s hope that things can improve for you, even though that can definitely feel impossible at times. Even without excision, some people are able to reduce their symptoms by changing their diet and lifestyle, learning to manage stress, treating co-conditions, doing acupuncture, etc. It can take time and trial and error to improve your quality of life.