I realize most of this blog centers around my struggle with (suspected) endometriosis, and yet I’ve never explained what endometriosis is.
Endometriosis is a chronic inflammatory condition. The inflammation is caused by tissues which grow in areas they aren’t supposed to- specifically, when tissue like the lining of the uterus grows outside of the uterus. (Adenomyosis is closely related to endometriosis; it occurs when tissue like the lining of the uterus grows within the muscle of the uterus. It is suspected that I have this condition as well).
These tissues form lesions which produce their own estrogens and other inflammatory compounds, agitating and damaging the surrounding tissues. The agitation and damage can become so severe that the body builds adhesions- or scar tissue bridges- hiding the lesions and gluing tissues and organs together.
To get a simplified idea of endometriosis- think of pimples. A pimple is caused by local inflammation as the body reacts to something (bacteria, dirt, etc.) trapped in the pores. As part of the inflammatory response the tissue grows red and swells, becoming painful as there are local areas of damage. If you pop a pimple, a scab will form to seal off the damaged area. Eventually pimple resolves as the immune system takes care of whatever caused the inflammatory response in the first place, and the pain from that pimple disappears with it.
Except, with endometriosis this is an internal process, and the tissue that is causing the inflammatory response never disappears (unless surgically excised), and the ‘scabs’ over the damaged tissue still form- as adhesions, which don’t resolve but stick the surrounding tissues together (unless surgically removed). And endometriosis can be much more painful than even your worse pimples.
There are numerous theories about how this aberrant tissue gets to locations outside of the uterus- most commonly on the peritoneum (abdominal lining), ovaries, and bowels, but also possibly the diaphragm, and even areas outside of the abdomen, such as the lungs.
The most common and persistent theory is Sampson’s Theory of Retrograde Menstruation.This theory states that during menses, shedding endometrium (uterine lining) and blood doesn’t always flow out of the uterus through the cervix and out the vagina- but rather some of that shedding tissue flows up through the oviducts (Fallopian tubes) and out into the pelvic cavity. There are a number of holes in this theory though- the largest being that studies have shown that both women with and without endometriosis experience retrograde menstruation every time they menstruate, and those without endometriosis never develop it. It’s also been shown that endometriosis lesions follow somewhat predictable patterns, and once the endometriosis lesions have invaded one area of tissue they can invade further locally (and with more depth into the tissue) but not spread to distant tissues. If free-floating menstrual products were causing endometriosis lesions, then a more unpredictable and structurally diverse location of lesions would be seen. Finally, Sampson’s Theory makes it incredibly difficult to explain the cases of endometriosis which have been confirmed in males undergoing estrogen treatments for prostate disease, or fetal tissues- both cases where exposure to menstrual products never occurs.
The far less popular, but more plausible theory, is that endometriosis lesions arise as a result of abnormal embryologic patterning and development. The aberrant tissue is always there, but becomes active as puberty is reached and after years of exposure to estrogens.
Regardless of origin theory subscribed to, endometriosis is a troubling and difficult disease to bear. It can only be diagnosed through surgical biopsy and pathological examination (adenomyosis can only be positively diagnosed by a tissue biopsy or hysterectomy), and many doctors are not trained to find the subtle and vast possible appearances of the lesions. Most people who are suspected of having endometriosis are rather given hormonal treatments (birth control pills, GnRH antagonists such as Lurpon, or aromatase-inhibitors like I’m on) to try to manage symptoms. However these treatment options do not actually treat the disease at all. For some individuals, they do work to effectively manage symptoms- but for others, like myself, they do not. And we must push for surgical treatment.