I have joined this page in search for answers and also to share any information I gather along the way. I have had an eventful summer- I miscarried at 9 weeks and had a D & C on May 20th. I bled for a few weeks and would have episodes where the bleeding would stop and start. I had a follow up ultrasound in July where they discovered left over products of conception in my uterus. I was advised to get a hysteroscopy D&C. I ended up having another ultrasound before the procedure at a different clinic where they found the AVM along with a small amount of leftover products of conception. I am now bleeding a little heavier than before and pretty scared about worst case scenario (loosing my uterus- I really want to have children). I have an appointment at Columbia Hospital tomorrow in NYC to look into this diagnosis further but was hoping I could get some advice on questions to ask and treatment options to run by the doctors. It seems not many OBGYNs have seen this issue before- all of the doctors seem lost on what to do which is why I am going to Columbia in hopes to see someone who has treated this before. Thanks for any help you might have.
I am so sorry for your loss, and that you're going through the terrifying ordeal of learning you have a condition so rare that many doctors are flummoxed by it. I had almost exactly the same thing happen to me in late 2013, and I want to give you both some concrete advice for getting treatment and some hope that treatment really can be effective and enable you to have kids in the future.
I had a missed miscarriage at 9.5 weeks, discovered at 11.5 weeks in late October 2013, followed by D&C and then six weeks of unrelenting and unexplained bleeding. My astute OB finally started to suspect an AVM, and an MRI pretty much confirmed it. She referred me to Dr. Anthony Venbrux at GW Hospital in DC, who has seen a handful of these in his lengthy career, which I gather is as many as any ever do see. In early December, he performed a uterine artery embolization during which he both confirmed the AVM with x-ray scans and treated it with a polymer that closed off the offending portion of the artery. By a month later, the bleeding had stopped and doppler ultrasound indicated no unusual bloodflow. After one regular monthly period and a visit with a maternal-fetal medicine specialist just to be sure, I was cleared to try to get pregnant again. I'm due with my first on October 30th of this year, and while I'm being monitored as a high-risk patient, so far (knock on lots of wood) I've had a healthy and normal pregnancy this time.
So, as for the concrete advice, I strongly recommend you ask about doing a uterine artery embolization to treat your AVM before considering anything like a hysterectomy (which I understand was the standard treatment until not all that long ago). I would bet that you could find docs in NYC who are familiar with this--though you may need to be asking about interventional radiologists rather than ob/gyns. You might also contact Dr. Venbrux in DC if you're having trouble finding someone. The embolization procedure itself was one that he had done tons of times--it is used to shrink and treat fibroids, a much more common condition and something I'm sure docs in NY do--though he warned me that it does come with an unavoidable risk of infertility if bloodflow gets blocked off for too long either to uterus or ovaries. I was lucky that my AVM was mainly on one side and not on the main artery, so he was able to use a permanent "glue" to block it without putting those organs at much risk. Had it been located such that there was a greater risk to the ovaries, I would have asked about egg freezing before doing the procedure. And had it been on the main arteries or both sides, Dr. Venbrux said he would have tried a dissolving "glue" to block it off for a while but not long enough to totally kill the uterus, if that makes sense.
All that is to say, you're in uncharted territory for treatment because there are so few cases, but there ARE options besides hysterectomy and there ARE doctors who have developed some good approaches for trying to deal with these uterine AVMs.
Good luck with everything tomorrow - and please feel free to contact me if there's anything else I can tell you that might be helpful. I'll see if I can figure out how to private message you with my email address...
Hi…I lost our baby girl at 19weeks 3days due to my avm I had heavy hemorrhage everyday for about 2 weeks and then was diagnosed with avm and was told that is why I lost her they did an embolization on me and put gel in both of my main veins to my uterus this happened on april 8th so roughly 4 months ago I have not had any hemorrhaging or crazy bleeding they told me on my repeat mri mra that it was gone and will probably never come back…I hope this helps a little if u have any questions I will try my best to help u …I also had to have 4 blood transfusions cause I had lost so much blood
Thank you both for getting back to me tonight and with detail about your situations. Very helpful and makes me feel better in a way hearing these experiences and advice.
Did anyone ever mention the watch and wait approach? I read that these uterine avms sometimes have “spontaneous resolution.” Doubtful but hopeful this will be the case for me.
Thanks for your reply. I received good news over Labor Day Weekend (I think). I am having a hard time trusting any of the doctors I have seen due to conflicting advice. No one seems to have had much experience with AVMs. I went back for another ultrasound and it looks like the remaining pregnancy tissue passed in my last heavy bleeding episode and they think the AVM has "spontaneously resolved." Has anyone ever heard of such a thing? They are not moving forward with an MRI/MRA because I am not bleeding and due to the ultrasound findings. I just hope this is really gone for good but worried they are missing something important.
Spontaneous resolution was never mentioned by my doctors, though I also never stopped bleeding until well after the embolization. Once it had been embolized, they did use ultrasound only - no MRI - to confirm that it was sufficiently treated to clear me to try to conceive. BUT, they also knew for sure it had been embolized and had x-rays from the embolization procedure showing the AVM was blocked off (the follow up ultrasounds were just to be sure the embolization had held and the AVM hadn't grown further).
My OB was adamant that the AVM had to be good and gone before I tried any future pregnancy, though, so I do agree with Angela's take that wait-and-see is a little nervous-making, especially as it sounds like you're not all that confident in the medical professionals who are advising that approach. My understanding is that AVMs can in theory interfere with fetal development, they can rupture and cause very serious hemorrhage at delivery, and they can also grow during a pregnancy because they are hormone-responsive. So, I guess if I were in your shoes, I'd feel optimistic that things may well be resolved, but would still want to confirm that no further diagnostics or treatment are needed with someone--an interventional radiologist or maybe a maternal-fetal medicine specialist--who I was confident had some experience with or at least a strong knowledge of uterine artery AVMs. Alas, I don't know who in NYC would fit that bill - my own Dr. in DC is the closest I can suggest...
Hi I know this is an old post but if you receive this please let me know how you got on as this is just like me, I had miscarriage at 11 weeks 6 days & had d&c on 2nd June 15 & didn’t bleed at all until 13th august 15 then bled continually for 21 days & scan showed tissue remains left inside so did another d&c on 4th sept 15. Then bled continually again then was diagnosed with uterine avm on 13th sept 15 & the hospital don’t know much about this at all which worries me so any advice would b really apriciated as I still want children and don’t want anything to ruin this! They have me on the contraceptive pill to smooth my womb out for 3 months & tablets to thicken my blood & stop the bleeding until 6-8 weeks when the will give me a MRI scan to see what to do & I want it clear in my head before they offer me anything, thanks in advance.
I'm so sorry you're going through this, Berryburst. If it makes you feel any more optimistic to hear a happy outcome, I'm glad to share that my pregnancy continued successfully after my last post, and I now have an happy, healthy, wonderful baby girl about to celebrate her first birthday. The main concerns through my pregnancy, post-embolization, were fetal growth restriction (due to any lingering AVM messing with blood supply to the fetus) and a risk of hemorrhage at delivery if the AVM happened to have grown back (no real way to check mid-pregnancy). In the event, neither was a problem. My girl has been at the top of the growth charts since long before she was born. And while my OB was extra cautious about watching for hemorrhage during and after delivery, and had blood on hand and wasprepared to send me for another embolization immediately after delivery if there was any hemorrhage, it didn't happen. Bleeding abated normally postpartum and I've had no unusual symptoms since then.
I did develop preeclampsia in about week 36, but since the pregnancy was so far along, it was just a matter of waiting until I hit 37 weeks (which counts as "full term") and then inducing. Neither my OB nor my interventional radiologist thinks that the preeclampsia had anything to do with the AVM; just a coincidence.
I do recall at one point--maybe between the embolization and conceiving again--my OB mentioning that if I still had bleeding from the AVM her fix would be to Rx oral contraceptives, so that seems like a reasonable treatment. My posts above summarize all that I can say from my own experience about what types of diagnostic tools and treatments may be useful. I hope they provide some help in thinking through what you want to discuss with your doctors.
Take care--I'll be wishing you the best for a successful AVM treatment and pregnancy very soon.
Hi bulldog01 thanks so much for getting back to me you have certainly perked me up with your response. I am currently trying to find a specialist in England who has dealt with 1 of these before (if there is any) I am bothered that they do MRI & say it has shrunk so do not need to do embolization as I want this done to know it’s gone for any other future pregnancies as I had blood transfusion with my son 11 years ago (which now they say May have been the AVM and as soon as got pregnant this time it has brought it back to light. How long after your diagnosis did you get your embolization? I hope I am as lucky as you 1 day, thanks again for your reply!
Yikes, sorry for my slow reply here! My embolization was done quite soon after diagnosis - within a matter of weeks. But I think I got lucky with an extremely proactive OB who happened to know and get me in with an interventional radiologist who had already seen and treated several uterine artery AVMs before, so that helped cut to the chase on doing the embolization. That said, if my AVM had been treatable with other means, or likely to shrink on its own, I would've seriously considered holding off on the emoblization, as the procedure is not without fertility risks. I hope by now you've found a specialist and gotten the additional scans and/or treatment to resolve your AVM so you can move forward...
Yes thank you. I am going to see your doctor Dr. Venbrux. My current doctor has no clue how to treat these and even mentioned hysterectomy! Im glad they found it but they just don't know how to treat it. My AVM is resolving very slowly. I go for an ultrasound every two weeks and it seems to get smaller but not very quickly. The bleeding is of concern though. I have ended up in the ER multiple times for severe bleeding. My current doctor has no clue what the heavy bleeding is being caused by since my AVM is slowly resolving. Like I said, my current doctor just seems LOST and Id rather talk to a doctor who knows more about this. Thanks