Fertility and Pelvic AVMs

As a 25 year old woman with a large muscular pelvic avm of course my doctors are worried about radiation from scans and embolizations but they have never specified any risks I may be facing. I have had 2 X-rays 7 CT 2 MRI 2 embolizations and a needle guided biopsy. Before knowing it was an avm seeing a fertility specialist to tap about preservation options was suggested but I cancelled the appointment when they diagnosed me and was told they could treat me. Now that the avm continues to cause problems I wonder if I’m harming my potential of children due to more scans and surgeries. Finding out this disease has stopped my ability to have babies would be a very difficult thing to deal with so I’m wondering if anyone has had similar thoughts, concerns, experiences, or advice that can be helpful! Thank you friends for the support!

Hi msamberxo, I’m sorry to read your story and I hope I can help you . I have a pelvic avm as well and am in my 40’s. I have known about my avm since birth and have had numerous test including ones with radiation etc growing up which never affected my fertility . So I hope that helps you to know . However I didn’t know the extent of my avm until I had my 1 pregnancy .
Have you thought about getting your eggs preserved ? Is that an option ? If your concerned .
I really feel for you , it is a lot to process and to deal with .
We are all here to support you in anyway we can .

Thank you for sharing your experiences with me. I have not been told by anyone that I should not has kids because of risks of rupture or anything like that my main concern right now never being pregnant before is actually my chances of getting pregnant due to all the radiation. I just have this terrible feeling that something’s wrong and that I will find outwhen I begin to try that I am infertile. It could just be my anxiety but this is my biggest fear, bigger than complications or rupture or pain I am terrified that someone is going to tell me I can’t carry children!

I am going to ask my vascular surgeon to refer me to a fertility specialist so I can talk about egg freezing. I know it is not covered by insurance but if it’s my best option I will make it work. Thank you friend for your help!

I think a meeting with a fertility specialist makes sense before you have further treatments, MsAmber. Then you can make the most of the options available to you. For what it's worth, some of our members have been told by doctors that they should not carry children... and then they bore children. I'm not recommending anything... I'm just observing that it happens that way sometimes.

I would strongly recommend that you talk with a vascular specialist who deals with AVM’s before considering a pregnancy though . Although I had one child I went in "blind " not knowing the extent of my avm and it became a high risk pregnancy . I am not saying this will be the same with you as I have the avm in other areas as well , but it will pay to play it safe . :slight_smile:

Yes Lis I have been told by my vascular surgeon that if I do get pregnant I will have to see a high risk specialist and possibly have amneo’s to check for things such as Down syndrome. My worries are that all the radiation exposure will cause infertility and am now considering egg freezing if my surgeons think it will be necessary. Thank you for your recommendation friend.