Hi everyone, I’m new here and so thankful to have found this group.
I‘m 31 and have a 3yo son. On 9/28 I had a D&C for a missed miscarriage at 12 weeks due to chromosomal abnormalities. After continued excessive bleeding, spotting and clots with multiple ultrasounds I’ve been told I have an AVM. My OB ordered an MRI which I had Monday and was consulting with an Interventional Radiologist. There has been a mention of embolization, which I’ve read was the treatment options on other posts.
I know my OB has never seen this before but she had been researching the options and has mentioned the risks on future pregnancies. I guess I’m just looking for advice, any recommendations or successes. It’s helpful to not feel so alone through this process!
Welcome to our community. I’m a brain AVMer so can’t share too much but imagine some from the Pelvic/Uterine group can provide some of their experiences. Take Care, John.
Welcome to the group! Like John, I’m a “brainer” but I hope some of the other ladies in the @PelvicAndUterine group will reply and share their experience. My reading of the many posts that I expect you’ve already started reading is that future pregnancies are not out of the question for most people but it will depend on your own circumstances.
Sounds really good that you’ve got a doc who is taking an interest and researching things for you! That doesn’t always happen.
Wishing you the best and I hope some of the ladies will share a bit of their experience.
Hi Courtney, I am so sorry for your loss and the AVM. I had a very similar story. D&C for foetal abnormalities at 16 weeks after a horrible pregnancy suffering from severe hyperemesis gravidarum.
Followed by excessive bleeding requiring blood transfusions to replace blood lost. Took a while to diagnose and I do recall searching for any obs who may have experience with AVMs as my GP didnt even know about them being in the uterus. I ended up getting the site cauterised (no embolisation) as the gynaecologist on call at the time I presented with excessive blood loss wanted to act conservatively and not go straight to embolisation.
The cauterisation seemed to work and I had no sign of the AVM in the follow up ultrasound a number of weeks later. It took a while to recoup my energy (anaemia) and feel comfortable each time i got my period, but about 6 months after my d&c i fell pregnant with my 2.5yo daughter. No more bleeding, no more AVM’s and nothing noteworthy re the AVM in her pregnancy.
I do recall trying to locate an interventional radiologist for embolisation, but it never came to that as the cauterisation appeared to do the trick. Or it may just have resolved spontaneously…who knows.
But hang in there. It can really feel like a lonely road but know there are plenty of us out there who have gone through similar experiences and are happy to help in whatever way we can.
Hello Courtney,
I’m so sorry to hear about what you went through.
I am wondering if you ended up getting the embolization with a IR doctor? I have a similar situation and have had embolization done twice (once in Jan 2020 and once in Feb 2021) and my latest MRI still shows that there is some of the AVM still there and I am developing symptoms again.
I am researching and going to a couple of new doctors for a consult.
My AVM is in my butt and hip and runs through my pelvis. My doctor’s have told me that pregnancy would be a big risk and that I would have a high chance of heart failure if I get pregnant. However they didn’t say it’s not possible, they just said (in my case at least) that I would have to be very aggressive with my procedures which in my case is embolization, and constantly monitored. Also I asked them if an AVM is something that can be passed on to a child and they weren’t really sure.