Endometriosis: Overview and Common Myths

As my blog starts up and I post for the first couple times in my categories, I think it’s important for me to get some basics down, especially in the Health section! I have a few obscure (and many not so obscure) illnesses and often people don’t know much about them. As endometriosis is my main adversary, I thought we’d start with it!

Endometriosis is a condition in which endometrial-like tissue (the tissue that is built up in the uterus and shed as a period every month) grows in places other than the uterus. For most endo patients, that means some combination of the following abdominal cavity structures and organs: bladder, bowel, fallopian tubes, intestines, colon, appendix, hips, connective ligaments, and the pouch of Douglas (or cul-de-sac). The pouch of Douglas is the areas behind the uterus, extending from the rectum to the back wall of the pelvis. Though more uncommon, endo can also be found in the lungs, diaphragm, or in 2 cases ever, the brain. Every month, this renegade tissue becomes inflamed and bleeds, like real endometrial tissue would. This spreads blood throughout the cavity. Some blood can be absorbed, some can’t, leading to aggravated tissue that causes extreme pain.

Many people, including misinformed doctors perpetuate myths about endometriosis that lead to ineffectual and damaging “treatment”. Some myths are as follows:

Myth 1) Endometriosis is an autoimmune disease
Fact: Endometriosis is an inflammatory condition. In order to be classified as autoimmune, endo patients would have to produce antibodies that cause the disease. Endo patients do not have antibodies, thus, it is not an autoimmune condition.

Myth 2) Endometriosis can be treated using ablation, birth control, or other hormone therapies that will shrink the lesions or make them go away
Fact: The ONLY treatment that works is complete excision of lesions. Think of endo lesions like weeds. Ablation burns the top of them, leaving roots behind to grow again. It also leaves carbon deposits behind that increase pain. Excision is like pulling the entire weed out, roots and all. It can’t grow back. And finally, *any* medication claiming to treat endo is a scam. Hormones may lessen symptoms but because the lesions can produce their own estrogen, they continue to grow despite any medication thrown at them.

Myth 3) A hysterectomy or pregnancy will cure endometriosis
Fact: By definition, endometriosis is outside the uterus. Removing the uterus will do literally nothing to treat endometriosis. It will help in the case of adenomyosis (endometrial tissue that has permeated the uterine wall), but not endo. Pregnancy will also do absolutely nothing to endo. Some women find it makes the symptoms go away, for others, it makes it worse. And either way, it’ll still be around once you are not pregnant anymore.

Myth 4) Severity of endometriosis = severity of pain
Fact: There is zero correlation between how bad your endo is and how bad your pain is. Someone with stage 4 could have zero symptoms while someone with stage 1 could be in debilitating pain. Pain can vary wildly between individual patients.

Myth 5) You will only have pain during your period
Fact: Pain caused by endometriosis can happen during your period, ovulation, or any time throughout the month. This is all determined by each patient’s hormone levels, pain receptors, cycle, and length of time their tissues are inflamed. There is no rhyme or reason to endometriosis pain in a general sense.

Those are the 5 biggest myths I’ve come across in my years as an endo patient. I hope you learn from my mistakes (having an ablation and going into medically induced menopause at 25) and seek care with these in mind!