Hello,
I have an AVM in my uterus. It has been corrected once by an Uterine Embolization Procedure and now it’s back or maybe it never left I don’t really know. All I know is that the bleeding stopped. I’ve recently had another issue with it due to a miscarriage.
Has anyone found that they have AVM’s in other parts of their body?
Is it possible to be prone to getting them? I’m new to all of this:)
Hey, Krista,
Welcome to AVM survivors!
Most of the people on this forum have an AVM in their brain: that seems to be the most common location. However, we have a number of groups, according to where a person has their AVM, as this helps the right folk with the same sort of symptoms or worries be able to find each other.
From reading around here for a few years, I think one or two of the pelvic AVM folk might have an AVM somewhere else as well. I don’t remember who or where but I think the affected area for pelvic and uterine folk may otherwise be in the trunk or legs – so gastrointestinal or extremity. Very rare to find a gastrointestinal AVM (probably because they may exist but are rarely discovered). There are definitely one or two ladies with an AVM top of thigh / pelvic area.
There is one hereditary condition that I know of, associated with AVMs, which is called HHT. That tends to have multiple AVMs in the brain, spine and I think trunk associated with it. Again, we have at least a handful of HHT folk here.
I hope you are doing ok. I saw your other post in the pelvic & uterine group.
Best wishes,
Richard
Thank you for your reply Richard. It was helpful.
I am doing okay. Just wanting to gather as much research as possible and find the right doctor to help me through the next stages in my life.
Take care, Krista
My pleasure. I think the ladies in the pelvic and uterine group will be of most help to you.
I had a pelvic UVM that was discovered in 2015. It had created a huge balloon sized aneurysm in a pelvic vein. The interventional radiologist used coils and a special glue to close all of the AVM connections. After that I went through several procedures and 2 surgeries to have the remaining mass removed. Hopefully, your doctors can do something similar (hopefully without the major surgery). Of course, this post is several months old, so maybe you’ve already had something done.