Endometriosis awareness has come on in leaps and bounds since I started this blog way back in the dim and distant past of 2009 (the archive you can find here as I update this site) and even more so from the time before that. This has led to some noticeable real world differences. For me, I’ve noticed that when I talk about my research interests there are a lot more people who know about endo, or have at least heard of it; I certainly don’t get as many blank stares as I used to. However, endometriosis still doesn’t receive the attention that it deserves from governments, policy makers and research funding bodies, so I salute those brave souls battling to raise awareness of this disease.
Endometriosis itself is far from rare, as we know 1 in 10 women of reproductive age are diagnosed with the disease. However, there are rare ways and forms in which endometriosis can present itself. This week’s post is dedicated to those rare forms of endo found in unexpected places in the body.
Anyone who is familiar with endometriosis will know that it is usually found on or around the pelvic reproductive organs, such as the uterus, ovaries, fallopian tubes and the surrounding ligaments and structures. What is less well known is that endometriosis has been found in almost every part of the human body. Fortunately finding endo outside the ‘normal’ locations is rare to extremely rare depending on the location. I’ve scoured through the literature and come up with the diagram below showing all the places endo has been found in the body.
It bears repeating that many of these incidences of endo are rare, some of the cases (like endo in the heart/brain/nose) have only ever been reported in the literature once or twice throughout all of history, so whilst they are not impossible, they are very, very unlikely. In a lot of these cases patients report cyclical symptoms, like pain or bleeding on or around the affected area around the time of menses, which is really the only clue physicians have that endo may be the culprit.
Here are the sources for each of the case reports where endo was found. It is probably isn’t a comprehensive list as there are multiple reports for each incidence, but I’ve only chosen one as a representative example.
Tear ducts: http://www.ncbi.nlm.nih.gov/pubmed/16974134
Heart, lungs and diaphragm http://www.ncbi.nlm.nih.gov/pubmed/23256014
Mons Pubis http://www.ncbi.nlm.nih.gov/pubmed/23444127
Leg Muscle: http://www.ncbi.nlm.nih.gov/pubmed/19152878