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Endometriosis is Not a Menstrual Disease

While excruciatingly painful periods or other menstrual problem can be a symptom of the disease, endometriosis is not a menstrual disease. This is extremely important to know and to be careful of when we talk about endometriosis or advocate so that we don’t accidentally pigeon hole it into being a period problem. When endometriosis is seen as a period problem:

It delays diagnosis.

If patients don’t have painful periods, they might be told they don’t have endometriosis – but one doesn’t need to have painful periods to have endometriosis. For some people, the first symptoms they have are digestive, or lung collapses, or fatigue.

It excludes people who don’t menstruate.

Such as kids who haven’t yet menstruated, post-menopausal people, people who’ve had a hysterectomy, or people born without a uterus such as cis-males.

It leads to harmful myths about treatments.

Such as the false ideas that endometriosis can cured by a hysterectomy or that drying up estrogen via medical menopause will shrink the disease or stop it from progressing. As we know, removing the disease itself is the gold standard but some doctors say, “Why do excision if the endometrium will just reseed the pelvis with endometriosis again via retrograde menstruation each menstrual cycle?” (It doesn’t, recurrence rates in expert hands are quite low.)

It encourages poor research using the mouse model mimicking retrograde menstruation.

There’s multiple ways a mouse can be given endo: a piece of mouse uterine horn is sewed into the peritoneum of a mouse. Or minced human endometrium is injected into the peritoneum of an immunocompromised mouse. This “endometriosis” is based off an unnatural pathology that isn’t actually human endo. This then influences our “understanding” and “treatment” of endo. And look where it’s gotten us today – knee deep in myths and misinformation which leads to further patient suffering.

Endometriosis can cause high levels of inflammation in the body, organs to fuse together (for example, the bowel fuses to the uterus or ovaries fuse to the pelvic wall), bowel blockages, lung collapses, infertility, organ loss, kidney failure, an upregulation of the central nervous system (causing a person to feel more pain to less stimuli), and other serious health problems. This is definitely so much more than “a painful period” (and again, not everyone with endometriosis even has painful periods!)

Endometriosis and uterus images

On this note – let’s be mindful in our advocacy of representing endometriosis with uterus images, so we don’t accidentally uphold this false idea that it’s a disease of the uterus.