Hello everybody! My boyfriend has a pelvic AVM treated with 8 embolizations in 2019. The nidus wasn’t totally occluded. The problem is that he’s symptomatic again. He had two hemorrhages in a short period of time, several pelvic pain after sex and a part of AVM pushes on the rectum. The doctors say that they can’t do anything, neither with radiosurgery because it could be very dangerous for the surrounding tissues and organs. He broke up with me because he said that he doesn’t know how his future will be with this invalidating and life threatening disease. I’m feeling very depressed because I loved him. But I also understand that having a normal relationship with a woman maybe is very difficult and love isn’t enough because even sexual activity could be dangerous. Which are the consequences of pelvic AVM if untreated? I’m still trying to understand because I’m suffering a lot for him and the end of our beautiful story. Thank you.
Hello, @Robys
Welcome to our community!
Ouch! Eight embolizations is quite a lot of intervention! I don’t know what is typical for a pelvic AVM but I expect it is higher than for a brain AVM – I am sure that the vessels are much larger just there! I’m equally sure your boyfriend is completely shocked at his troubles – and this is the big issue.
My AVM is in my brain, so the risks associated with that are that you can have a stroke and lose significant function. In the same way, having an AVM in the pelvis the risk is of bleeding but no risk of a stroke. I don’t know about pelvic AVMs really but I would expect that the vessels are much larger and therefore a haemorrhage runs the risk of causing you to at least faint and run the risk of death if a lot of blood pressure is lost, I suppose.
We do have an area on this site, dedicated to pelvic and uterine AVMs. Most of the cases are ladies who discover their AVM because of troubles with a pregnancy or excessive bleeding during a period – so perhaps more often discovered in ladies – but I think we do have at least one man.
In most cases that I can think of, embolization is the most regular treatment; resection of the vessels is probably next. However, if your boyfriend has been advised that no further intervention is possible, that is very difficult. It is true to say that it is often impossible to operate on some brain AVMs and some people do have to live with the trouble, so he would not be alone in that.
The only other main thought I’ve got is to seek out a second opinion on what is possible. These things are very rare and expertise in them such that, certainly for brain AVMs, different opinions definitely arise.
How long has he known about his AVM? If he has had several embolizations, I assume he has known for quite some time but if it is recent, I can say that it is always a big shock and I’m not surprised that he is pushing you away during a time of his own shock and (in some ways) “denial”.
Have a read of the stories in the Pelvic & Uterine area.
Hope something here helps,
Richard
Thank you. First of all sorry for my english, I’m italian. I’m writing here because is very difficult to find informations and opinions about this rare disease. He has known about his pelvic AVM since 2018. He was fine after the surgeries, but AVM became highly symptomatic again and this time, as doctors said, no further intervention is possibile, so he pushed me away because he has no idea how his life will be…
It makes complete sense: so it is a new shock again.
By the way, your English is perfect. Ho studiato l’italiano a scuola (molti anni fa) ma lo uso così di rado che me ne sono dimenticato quasi tutto.
I hope that it is only the shock of the new that means he is pushing you away. It is normal and natural.
He is definitely not alone, as there are people here with brain AVMs who cannot have an operation. When it is most difficult is those who see it as a ticking time bomb. It is much better if you can put it out of your mind and enjoy today rather than worry about tomorrow. However, this is something that will take time and encouragement to get to, I think. It is very usual to reject the world when a catastrophe like this occurs.
I hope you can follow my English!
Very best wishes,
Richard
Sure, I can follow your English, that’s nice of you to say. Complimenti per il tuo italiano! I attended Cambridge courses at the high school.
You are right by the way, I know it’s much better if we put troubles out of our mind, living day by day.
The point is that I think he can’t even live the moment peacefully because of the hemorrhages and pain.
I told him that he wouldn’t be alone, but he feels so guilty for breaking up with me (he said “he did it for me”) and he’s completely gone from my life even as a friend.
Maybe I just have to accept his choice, maybe it’s better for both of us because I understand that without surgery AVM can only get worse in the long run.
Thank you for all the support Richard!
I’ve no idea what the right choice is to make as to whether to stand by him, or not. It’s a tough thing to do to stand with him but it’s a very honorable thing to do… so has to be your choice. If I were him, I’d be despairing at the moment and I think it is natural to push you away. But. It. Is. Entirely. Up. To. You. To. Decide. How. You. Want. To. React.
None of this stuff resolves quickly: if you decide not to accept his rejection, it’ll take a long time to get him back but only you know if he’s really worth it.
(Spero che sì!)
Richard
Last time I heard from him was November…he confessed to me that he felt “dead inside” because of the situation. He lost love and hopes…just desperation. I can try to send him the wishes for his birthday when the day will come. I don’t want to cause him other troubles
It’s understandable.
Ask some of the ladies in the @PelvicAndUterine group about the risks re untreated AVM and risks they’ve been given. Have a read and I hope for some good news somewhere.
Keep in touch.
Richard