Quantcast

AVM Survivors Network

I have a uterine avm


#1

Just been diagnosed with a uterine avm. I am 6+2 post surgical erpc for my 8th loss. I had bleeding issues that kept stop/starting and was mostly heavy. At first they thought it was retained tissue but because it had blood flow i was told it would be AVM or placental site tumor, had to wait two weeks for a rescan whilst on progesterone and antibiotics (ive had 4 courses now). On recent scan its not retained tissue, no thickened lining to indicate pregnancy/retained tissue and they have now confirmed a AVM, ive been referred to interventional radiologist and having a MRI on friday to discuss embolization. OH & I are really wanting to ttc and i now for now we are unable, but how soon was you able ttc, was you able to get pregnant, did you have any higher risks or complications due to having avm/uae. Im also still testing positive so its making me wonder if i a tiny amount of retained tissue undetectable on a US. I want to hear your stories. X


#2

I had the UAE (uterine artery embolisation) done two days ago by a radiologist who specializes in UFEs (uterine fibroid embolisations). She used a temporary agent, gel foam, that only lasts for 3 weeks and she localized the gel foam as close to the AVM as possible. While there isn’t research to support her, she doesn’t believe that it will affect future pregnancies. She wasn’t sure how long to tell me to wait to conceive again, but said maybe 3 months. I’m having an ultrasound in 3 months to see if the AVM is still there. This all started after having a 21-week termination for medical reasons. She was our first baby so we are eager to have a successful pregnancy.

A little more detail, since I know this is what I’ve been looking for online…

I had a D&E on 8/2/17, was bleeding for 4 weeks but by the end it was mostly just spotting. I thought I got my period on 8/26, it was very very heavy but when I searched online and talked to nurses, I was reassured that this can be completely normal. On 8/29, blood started gushing out of me and I was passing large clots (in the bathroom of a nice restaurant, of course), so we drove to the ER. There, they did an ultrasound, pelvic exam and blood test. The dr said the US was inconclusive - no retained products, he could see where I was bleeding from and told me about AVMs but told me he didn’t think anything abnormal was happening. (Looking back, I can’t believe I believed him, this clearly wasn’t normal). I went home, strong bleeding for another week and on 9/5 started hemorrhaging (just a little) again so I went to my high risk pregnancy Dr who did an US and said I have an AVM. She put me on methergine, I ended up being on it for 9 days, which stopped the bleeding (except for the 3 days I had my real period, I knew for sure this time). Bleeding stopped post-methergine for about a week. My ob-gyn had me meet with the radiologist and we scheduled an MRI and UAE for Mon/Tues. Over the weekend I started bleeding again so I was scared but very relieved that the UAE was scheduled. I had the UAE two days ago now. I had sedation but was awake for parts of the procedure (crazy stuff but didn’t hurt too bad I promise). Letting my wrist (where they put the catheter in) heal, slight cramping, bled a little that night but not since. Now I wait, hoping the US doesn’t show even the smallest AVM.

The UAE wasn’t easy, but I chose to do it so I could start moving forward and stop living in fear while waiting for the AVM to heal on its own.

Wishing everyone the best through your experiences, it is not an easy time. I’m remaining hopeful though.


#3

Hi Hannah, im so sorry to hear your story and the struggles you have had. I am 7 weeks post surgical erpc (D&C) tomorrow and still bleeding even with tranexamic acid and progesterone, my bhcg is still testing positive. I am completely fed up. I have a MRI tomorrow to look at the AVM and then i need to meet with the radiologist to discuss UAE. Keep me posted on your recovery please hun and good luck. Did your radiologist mention any risks on future pregnancies? X


#4

From what I understand, a UAE can pose a risk to future pregnancies because it is blocking off blood supply to your uterus. What that means exactly for future pregnancies, I dont’t know, but I can see how a lack of blood supply could affect development. The embolic agent my radiologist used was a temporary gel foam (dissolves after 3 weeks), so theoretically the blood supply will only be blocked off long enough for the AVM to resolve. I’m just hoping 3 weeks is enough for the AVM to resolve.

Best of luck to you too, I hope you get some good news or are able to set up a plan with your radiologist that you’re happy with.


#5

Thats what i thought hun. Had MRI today so waiting to speak to consultant
about results. X


#6

Just an update… I have since learned that there is collateral blood supply. Don’t quote me… but I think bloody supply is pulled from other nearby regions and maybe even created to replenish what was destroyed from the embolization. All is not lost!

Also, after having a UAE to treat my AVM on 10/3/17, I am now 7 weeks pregnant and both the radiologist and OBGYN have no reason to be concerned what-so-ever… which is great. I had an ultrasound and my baby, uterus, and ovaries look perfect and healthy so far.

There is definitely hope for us all!