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Endometriosis Overview

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 is a systemic, inflammatory, full body disease.

Endometriosis is when tissue similar to the endometrium (the uterine lining) grows outside of the uterus. Endometriosis isn’t the uterine lining – it’s tissue that’s similar to it, but there are hundreds of differences between the two tissues.

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.

What causes it?

Endometriosis isn’t caused by retrograde menstruation. No one knows what causes endometriosis, but 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 Unfortunately, some outdated websites continue to promote the misinformation that being white is a risk factor for endometriosis, which delays diagnosis for people who are not white.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. There is no age too old or too young. Endometriosis has been found in fetuses as well as people in their 80s!

You can have endometriosis and endometriosis pain post-hysterectomy or post-menopause.

Diagnosis

You can have a negative ultrasound or MRI and STILL have endometriosis, as not all forms of endometriosis show up on scans. Additionally, when endometriosis signs are present on a scan, not all doctors have experience in recognizing them. Even the best (or self-proclaimed “best”) ultrasound or MRI experts in the world cannot rule out endometriosis using scans.

The only way to have a confirmed diagnosis of endometriosis is via surgery, a biopsy, and a pathology report. This is when they look at the tissue underneath a microscope and confirm that it’s endometriosis. 

Medication can’t diagnose endometriosis (for example: having less pain on a medication such as Lupron doesn’t mean you have endometriosis.) There is no blood test that diagnoses endometriosis.

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

What treats it?

Because endometriosis is a complex inflammatory condition that can affect the full body, it’s recommended that the patient work with a multidisciplinary team with excision at the cornerstone to address the disease from a full-body approach.

There are 2 types of surgery: ablation (superficial burning of endometriosis) and excision (cutting out at the root). With excision, the rate of recurrence (endometriosis coming back) is around 7-20%. With ablation, disease persistence is fully expected, since the endometriosis wasn’t truly removed in the first place (and therefore persists). With excision, many people find that their pain significantly reduces and their quality of life improves. With ablation however, many find their pain returns within just months after surgery. Tissue damage from ablation can also become its own source of pain in some patients.

Most gynecologists do ablation surgery. It takes special training and a high level of skill to do excision, so there are only about 200-300 excision surgeons worldwide.

Hysterectomy, pregnancy, and medical/natural menopause 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.)

Birth controls, hormones, and GnRh drugs (such as Lupron, Orilissa, Zoladex, Synarel, Visanne, Dienogest, Mirena IUD) don’t treat or diagnose endometriosis. These manage the symptoms only (for some people – they don’t work in everyone, and any relief is typically temporary with pain returning once the person goes off the medication.) They don’t remove existing lesions, and endometriosis can still progress while on them.

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, or doing Traditional Chinese Medicine (such as acupuncture or Chinese herbs). It can take time and trial and error to figure out what works for you, as well as addressing both physical and mental health, but hopefully you will find ways to improve your quality of life and get out of survival mode.

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