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Endometriosis is defined as “a systemic, inflammatory disease characterized at surgery by the presence of endometrium-like tissue found outside the uterus, usually with an associated inflammatory process. It is a spectrum disease with a variety of subtypes and clinical presentations, and pain, inflammation, infertility, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), GI and other organ dysfunction, and much more are common with endometriosis” (Int’l Endometriosis Working Group, 2021).

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It’s critically important that we use and the doctors we see use the proper definition of endometriosis. This is because endometriosis is often incorrectly defined as “the lining of the uterus growing outside the uterus”. When in actuality it’s DIFFERENT than the lining of the uterus and thus does not react to the same hormones. As you can probably guess, getting this incorrect can lead to inaccurate and ineffective “treatments” being offered to patients.

Here is the correct information about some of the most common myths…

• Birth control does not treat, slow or control the growth of endometriosis. For some, it may help alleviate certain symptoms.

• Pregnancy does not put endometriosis into “remission”. Nor should pregnancy ever be looked at as a medical treatment.

• Endometriosis is not a bad period or a period disease. *Refer back to the definition.

• A hysterectomy is not a cure or treatment.

• You are not too young to have endometriosis.

*This is not a complete list.

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The only way to get an official diagnosis for endometriosis is through a biopsy done via laparoscopic surgery.

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Unfortunately, this is where the lack of understanding around endometriosis starts impacting patients well- being and access to care. Because of the current stance in the medical field on this disease (it’s treated as a gynecological condition instead of the whole body disease it is) you will typical start your journey at the gynecologist and they will play a large role in helping you “manage” endometriosis. However, this is not ideal and general gynecologist do not have the same understanding and ability to treat endo like a true endometriosis specialist does. So the answer is both yes and no. Ideally we would not have to see a general gynecologist but that’s the typical experience of an endo- warrior. *Check out the Resource links to find out more about true endometriosis experts.

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