Pelvic AVM

Hello everybody! Richard suggested me this group.
I’m writing here because it’s very difficult to find informations about this rare disease. My boyfriend has pelvic AVM which was treated with 8 surgeries of embolization in 2018, but the nidus was not totally occluded.
He was fine but AVM became highly symptomatic again with several pelvic pain, mostly after sexual intercourse, and two hemorrhages.
A part of AVM also pushes on the rectum unfortunately. Doctors said that no further intervention is possible. Radiosurgery could destroy all the surrounding organs. He broke up with me overnight, pushing me away with harsh words such as “I don’t love you anymore”.
Then he explained me his situation and I think he’s afraid to die.
He said that he “had to do that” for me because it’s too difficult living a normal life and he has no idea about his future (he’s a doctor too). What a tragedy.
I’m feeling very depressed because I loved him so much and I’m so sorry for him. I was wondering about the consequences of untreated pelvic AVM. Can it only get worse in the long term?

@PelvicAndUterine group,

Are there any members who could help @Robys understand what the risks are associated with a Pelvic AVM? I know many of you have AVMs in our near your womb and some things are clearly different for men but if you can share anything around the risks explained for you re bleeding – for example @Robys boyfriend cannot have further treatment – I think it could be of help.

Many thanks,


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