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Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endo). Always check with your qualified medical professional before making any changes to your treatment plan.
What causes endometriosis?
In spite of the various claims on the internet, no one knows the cause of endometriosis. “The definitive cause(s) of endometriosis remain under debate, though demonstrated association with a number of hereditary, environmental, epigenetic and even certain menstrual characteristics exist. Current research implicates HOX genes, mesenchymal stem cells and certain immunologic factors in disease origin; nonetheless, no single theory explains endometriosis all those affected; more likely, a composite of several mechanisms is involved.” [Quote from the Center for Endometriosis article: Endometriosis: a Complex Disease]
Evidence is stacked against the theory of retrograde menstruation. Also known as Sampson’s theory, this theory is that menstrual blood leaks out of the tubes into the pelvis and these bits of endometrium implant themselves in the pelvis where they land and grow into endometriosis. This 100-year-old theory has never been proven, and in fact, has been debunked as the cause of endometriosis. I did an in depth Instagram post about some of the evidence against retrograde menstruation (with sources) here. The most damaging aspect of retrograde menstruation is that many ineffective treatment options are based on this unproven and incorrect theory, at a detrimental cost to us patients. I talk about this in an Instagram post here.
In December 2022, new research came out with further evidence against the theory of retrograde menstruation in a study comparing tissue samples by Horvath’s pan-tissue clock. While this study only looked at ovarian tissue and not all disease sites, the researchers found that the endometriotic tissue was epigenetically younger than the endometrium, with a difference in age well outside the margin of error. The researchers state that the DNAm age of the endometriosis lesions suggests a developmental origin.
While there are several theories to the cause of endometriosis – and there may indeed be multiple factors and causes playing into why a person has it – one theory of origin is Mulleriosis/Metaplasia. This proposes that endometriosis is due to a developmental defect in the formation of the Mullerian duct system when we are embryos (with involvement of the HOX genes). The Mullerian duct is the very beginnings of the reproductive system that will later form the fallopian tubes, uterus, uterine cervix, and superior aspect of the vagina. Cells that are laid down during its formation may have abnormal migration (they may not go to the right spot) or abnormal differentiation (when a cell changes from one cell type to another) and later develop into endometriosis.
In fact, in one study endometriosis was found during autopsy in fetuses assigned female at birth (who died for other reasons) at around the same rate, 10%, that it is found in the adult population of people assigned female at birth today. The theory of embryonic origin can explain:
- how endometriosis can be found anywhere in the body.
- how endometriosis has been reported in the medical literature in around 20 people assigned male at birth. This could be because as embryos, we have the beginnings of both the (what’s considered) “male” and “female” reproductive tracts during the first 6-8 weeks in the womb. Typically, one regresses and the other develops, so that the embryo has that specific set of reproductive organs. However, cells from the reproductive track that regressed can remain behind.
- why endometriosis is found in embryonic patterns in the body and has low recurrence after true excision.
It’s not your fault
While we still don’t know what causes endometriosis, one thing is certain – you didn’t cause your illness and it’s not your fault.
- You’re not sick because you eat X or don’t do enough Y. You’re not sick because you didn’t take “good enough” care of yourself.
- You’re not sick because you are being punished for being a “bad person”.
- You’re not sick because of your childhood trauma, because you don’t love yourself enough, or because you “rejected your womb” (not my words – these are claims from some people on the internet).
- You’re not sick because it’s all in your head or psychosomatic.
You’re sick because you have an incurable disease called endometriosis. It took me a long time to realize that it’s not my fault I’m sick – I don’t need to judge how I take care of myself, and having endometriosis is not some moral reflection about my character. Unfortunately, with diseases like endometriosis that are poorly understood and receive little funding, there’s an abundance of false claims on the internet from misinformed, and sometimes even well-meaning, people on the supposed causes and cures (endometriosis has no cure) for endometriosis.
For More Info
- Who is Sampson, and what does he have to do with Endometriosis? – from the Center for Endometriosis
- Evidence against retrograde menstruation – a detailed post with sources that I made on Instagram
- Theories of origin– Link to Endopaedia, a website that represents the life’s work of world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.
- Opitz’ mesoblast theory of origin of endometriosis – YouTube video by Dr. David Redwine.
- History and Origin of endometriosis – YouTube video by Dr. David Redwine (it’s different from the one above although it has the same cover art!)
- Mülleriosis: The best-fit theory of the origin of endometriosis – Dr. David Redwine’s theory that we are born with endometriosis.
- Origin Theories of Endometriosis – Overview of various theories on Nancy’s Nook.