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AVM Survivors Network

New to uterine AVM after misoprostol

Types of Avm's Pelvic & Uterine AVM
#1

Hello everyone, I’m Lara and new to UAVM. I was diagnosed with it after a medical miscarriage at the beginning of november. After taking misoprostol (pregnancy had stopped at 6 weeks) I had a follow up and the doctor saw that there still was something in my uterus. She first said I should have a D/C but then discovered that the area was too much vascularized and told me that I had an uterine AVM. Now I’m taking the pill and the bleeding is getting lighter every day (just some spotting at the moment).
I am so worried because I never heard of this condition before and found nothing on the internet. Finally I found this site where I can talk with other women dealing with this problem and would like to share experiences with you! I do not understand why my gyn did not consider embolization…?
Until now I had just an apisode of heavy bleeding (with big clots) but I don’t know if it was related to the miscarriage or to the AVM.
From the day I started to take the pill it seems that the bleeding decreased and almost disappeared but… in two days I have to take a long flight (12 hours) and I am so worried to start bleeding on the airplane!!!

Anyways, I’ll have to go back to the doctor next 19th december and hope to hear some good news. Did someone have a spontaneous resolution of the AVM? Is this possible?

#2

Unlikely. I think that would be in the realm of miracles. Not to say “no”. But very, very unlikely. :grimacing:

I’m not particularly familiar with pelvic or uterine AVMs (mine was in my brain) so I’m hoping one of the ladies in the @PelvicAndUterine group can share a bit of their experience with you. If you look down the home page you’ll find an area related to pelvic and uterine AVMs under “types of AVM”. There is decent reading material in there. Actually, you’ve already found it!! Have a read around.

In general, I believe the risks associated with a uterine AVM tend to be during pregnancy, so the fact you’ve had a miscarriage and found this thing could turn out eventually to be a good thing (I know it feels like the worst thing on top of the worst thing at the moment but going on to have a successful pregnancy for 9 months could have been quite dangerous for you and your baby). So it will be a good thing it has been found. Honest.

It is worth having a chat with your gynae and/or vascular surgeon about flying. None of the advice I’ve read has ever said “avoid flying” but I do know someone who has a brain AVM who has pretty regular nosebleeds and he had one on a flight. So it could happen. I also know one or two people who have had to fly to their brain surgery appointment, so there are both sides to the question!

Welcome! It’s great you found us and it is lovely to meet you! I think everyone arrives here frightened by their diagnosis. It’s a natural way to be but hopefully by sharing with others and understanding more about it you’ll get to a more accepting, comfortable place.

Very best wishes,

Richard

#3

Hi Lara - I had a uterine AVM following a c-section almost 10 years ago now so I’m not up to speed on the latest but as far as I know these are rare so there’s not a whole lot of info out there. I don’t know if they can resolve on their own but I had embolization done and it worked for me. I didn’t have much of a choice because I was hemorrhaging and had to get multiple blood transfusions as a result. But they told me at the time that they didn’t know if I could get pregnant after the procedure since no research has been done on that. It could be why they are holding back with you. I’m happy to share that I did have a successful pregnancy a couple years later. I know of other members on this forum that did as well.

All the best,
Marie-Claire

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#4

Hi Marie-Claire thanks for sharing! It is so important talking and sharing our experiences with others in the same situation! I am not hemorraging (the last episode has been more than a month ago) since I’m on the pill… and hope it lasts! I already have 3 kids (16, 10 and 11 months) and we would like to have the last one, but who knows if I can get pregnant again?
In december we’ll see what she says. I pray and try to stay positive!

#5

Hi Richard I loved reading your answer. I feel I found a place where people understand what I feel (and what I fear). I already read some stories, they all are different so it is so difficult to find the answers we have in our mind, but just knowing that I am not alone in this situation makes me feel better. And if my story can make someone else feel the same, well, that is even better.
About flying my gynae said that avoiding would be exaggerate but that clearly there are some risks… I hope to have a safe flight tonight. I will surely tell how it went when I’ll be back!

Lara

#6

Lara,

It’s great to have you in the team! I arrived here three years ago, just as frightened as you, as I had just had a diagnosis that the “bush, bush, bush” sound I could hear every second was an AVM discharging blood into a vein passing near my ear. Your world turns upside down and some stuff people say helps to calm things a bit and some stuff frightens you silly. It’s just about getting used to the idea that there’s a thing here and being patient to see how it needs dealing with, if it can.

So, welcome! By sharing our stories, we can help each other, as you say.

Have a fine flight. Relaxing is probably the most important thing. Keeping your blood pressure in the right range is good for these things. Cut out stimulants like coffee, chocolate, alcohol, smoking as they push up the blood pressure.

Very best wishes,

Richard

#7

Hi @Lara,

Im so sorry for your loss, they discovered my UAVM in a very similar way to yours. They refused to do a D&C in fears of rupturing the avm resulting in a hysterectomy. I had 4 pregnancies and 0 children at that time so saving my uterus was high on my list of priorities.

My medical history is very rare and lengthy, all of it pregnancy related. It was 5 years of searching for answers and alot of the time coming up short, but one thing I learned is to be your own advocate. Don’t stop when a doctor says their going to just “wait and see”. You should push for an MRI, find the best radiologist who can explain what your veins and arteries are doing in there and will explain in detail what they can do to fix it.

I hoped and prayed for some sort of miracle that it would just go away, out of fear of what had to be done to fix it and what it meant for us starting a family, but when it comes down to it these things need to be fixed.

4 months after I had an embolization done i became pregnant and have a beautiful healthy baby boy who is about to turn one.

But with me being the rare bird that I am, my pregnancy and delivery was anything but normal. Regardless we both survived and now I hope I can help others even if it’s just sharing my experience because I know everyone’s is unique! Let me know if you have any questions, hopefully I can help!

Eva

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#8

Thank you eva for sharing your experience! Your story gives me hope and this is so important… not to lose faith and hope.
Next Thursday I will see my gyn in order to check if the abortion is complete (when she found out the UAVM there still was “remaining product”) and evaluate what to do with my UAVM. I think I will ask for an embolization like you did… Was it complicated? Painful? I have no idea of what a kind of operation this is…

Anyway, in the meantime I’m trying to thay positive :slight_smile:

#9

Lara,

I think embolisation is a relatively unintrusive way of having an operation. For brain AVMs, it is usual to use something like “onyx” or “phil” embolising material (glue), which basically blocks up the naughty connections. They do it by inserting a hole in one of your major arteries (I had mine through an access into my femoral artery, at my groin) navigate a fine tube all the way to the affected area and inject the embolising material in the right place using the tube. I effectively had brain surgery through a 6mm cut in my groin. It’s not pleasant but it is undoubtedly “keyhole” surgery at its finest and of ways to about this kind of thing, I think it is just fine. If I needed a second lot of glue, I’d be happy to have another go.

Some arm / leg / hand / foot AVMs are treated using alcohol embolisation and I believe that is rather uncomfortable. I don’t know which is used for uterine AVMs but I think it is the more usual onyx treatment.

Any questions, just ask.

Richard

#10

Yes like Richard said it is fairly noninvasive. I was awake but heavily medicated I had amazing nurses who talked to me the whole time made sure I was warm and as comfortable as I could be. My radiologist explained the different types of product that he could use (coils, beads, glue ) and told me all the risks of each product. He ultimately decided on the glue. He also went in through my groin and I was out of the hospital that afternoon. The pain medication made me feel really sick the next day , I was slow moving and a little crampy for a few days, but I mean everyone heals differently!

After the surgery was complete the radiologist showed me on the big screen it being done which was kind of interesting to see. After a few weeks I had a follow up MRI and was given the ok to TTC after a few months.

I get how scary this is , staying positive will help immensely, even if it’s hard. Hang in there !

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#11

Could I be nosey and ask how you was monitored during and after pregnancy

#12

I found someone that specializes in high risk pregnancies and he did ultrasound every 3-4 weeks. I had a planned c-section. Everything went really well so we didn’t feel the need to continue seeing each other beyond the normal post-natal checkups. She’s now a healthy 8 year old :slight_smile:

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