So I discovered last week that I have a pelvic avm, extending to the side of my uterus and downwards, not sure of the full size.
I’m waiting for an angiogram to know the full details, but in the meantime have been told it’s far too risky to get pregnant, which is upsetting at age 36 as it’s been a year on standby waiting to get it diagnosed and now facing an unknown time for embolization and no guarantee anything will work.
However, I have no symptoms at all and reading through everyone else’s stories I certainly feel very lucky!! I discovered the ‘cyst’ incidentally and now almost wishing I’d never known about it!! Hoping an embolization will get everything under control but hard to know what lies ahead.
Just sharing my story as there is SO LITTLE on the internet that it feels like I’m the only person to ever have been in this situation…!
You’ve found the right bunch of people in this particular category off the home page. Your initial post will have been emailed out to all of the P&U members, so I hope one or two will be motivated to welcome you properly and share a little about their experience.
I’ve added you to the P&U group so if others post new stories you’ll also get an email.
If you’ve got any questions, do say out loud because that may correspond with the concerns others had and provoke the ability to share a little. This is what it is all about: just being able to lean on one another a little.
Very good to have you join us, though it’s a shame why all of us had to go searching for this kind of place.
I just wanted to chime in to say I’m sorry you’re going through this and I know what it’s like to feel like you’re the only one who has this problem, as my avm is in a rare location as well (submandibular region). I really hope they can get you scheduled for an angiogram soon so you can get a better picture of what is going on and how they might be able to fix it. Best wishes to you!