I am not assoicated with this facebook group but it was started from people who posted on my site. I do not use facebook as it cannot really provide anonymity but it seems like a lot of people getting support from it. There is a wide variety of people that have had coils placed for different reasons :
https://www.facebook.com/groups/1913431375624304/
Here is an interesting FDA statement about materials used in medical devices highlighted by MELISA:
Back in the day, I had found this page which confirmed that there are many other people like me. It was this page that sparked me to create this website :
http://www.topix.com/forum/med/urology/TUUCU6D07IG3MPM8J
Also, according to the above website, it seems that at least one person has not only removed the embolization via laparoscopic surgery, but also had it filmed and put on youtube. Difficult to understand if this person’s pain went away:
https://www.youtube.com/watch?v=WPk011t__OE
This is a peer-reviewed study which mentions that mentions notably “there have been case reports of renal loss as a result of coil migration” post-embolization (my emphasis on the S) :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3433543/
removal of ovarian coils :
http://ages-asm-isge-15.m.yrd.currinda.com/schedule/session/760/abstract/1388
case report coil removal :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5737349/
I don’t know much about this organization but it seems promising:
https://www.icij.org/investigations/implant-files/
lessons from wolverine (warning graphic…;)