Hello, not trying to leave out the males but unfortunately this is not something that males can help with. I posted last year about pain during menstrual cycles, that how I knew mine had grown back. I had an embolization in October 24, the pain after was different then the first, it triggered the CRPS again, and I had deeper pain than I had the first time around in my ankle. Sort of felt like I had cement in my joint. Anyway, two months post op, Dr. Rosen ordered a repeat MRI, problems with insurance delayed me getting it, it’s scheduled for next week. But I’m starting to have pain during my cycle again, really intense pain. I’ve had CRPS for years since the first embo, and this is different, it’s deep, like a balloon inflating with no space to grow in my muscle. So my question is has anyone still had pain during their cycle even after it being embolized and it being supposedly completely occluded?
Hi Jamie!
I haven’t had embolization but I’ve had sclerotherapy twice in 2023, and I also noticed my AVM growing back because it would get painful during my period. It also feels exactly how you’ve described, like an inflated balloon in the muscle, or my shoulder starts to feel very “full”. I’ve been waiting for an urgent MRI for 6 months now (stupid Canadian healthcare) to see how much my AVM has grown so I can get sclerotherapy again. I find that CBD creams can help with a bit of the pain as many other types of pain killers don’t seem to work for my AVM. Hope this helps a bit (:
Thanks for you reply, turns out I had a superficial blood clot, they ordered an MRI to see if it was gone which it was and of course it showed that there is some growth in the AVM as well. How do you like sclerotherapy? Do you feel it works? How’s your pain after a treatment?
Hey Jamie!
Sorry for the late reply. Unfortunately, sclerotherapy is the only treatment available to me because of the location of my AVM. I had 3 rounds of injections 6 weeks apart, and that worked for about a year. Not to scare you, but it was genuinely the worst pain I’ve had post-treatment. This was likely due to my AVM being wrapped around my nerve plexus, so my theory is when the AVM shrinks it is putting pressure on the nerves = pain? Not totally sure, and neither is my specialist. I was also working as a bartender at the time and did not follow the strict “no lifting anything heavy for a week” rule. (I’ve since learned my lesson). The severe pain only lasted for about a week, then became much more bearable for another 3-4 weeks, just in time for another round of injections. Honestly, the whole process was worth it to me. I’d rather the short term pain and a year of none than the constant pain I have from my AVM now.
All the best.