Uterine AVM after surgical management of miscarriage

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I have been diagnosed with a uterine AVM, following an MVA (which I think is the same as ERPC, but under a local anaesthetic) after my missed miscarriage at 10 weeks (I had a miscarriage previously at 6 weeks, this pregnancy followed straight on, I had no period in between).

I had the procedure 7 weeks ago and had been having bleeding and positive pregnancy tests since. The hospital initially thought it may have been retained product (hate, hate, hate that term!), but there was quite a lot of blood flow to the mass in my uterus, so an AVM was queried. I had a negative hpt today, and another scan, unfortunately the mass had not decreased and still has quite a big blood flow - hence finally being diagnosed with AVM.

Sorry for the essay, I would just be interested to hear if anyone else has experienced this. I can't find much info about it. I just want to try and move on from my miscarriages, but finding it so difficult after continuos trips back to EPAU, even though I haven't actually been pregnant for 7 weeks.

Thanks in advance for any replies

Hi LauLau,
How did you get on at work? Hope it went well. x

Hi,
Thank you for your lovely message! Work was ok thanks. Bleeding has calmed but it's come and gone before. I'm a secondary teacher so have horrible visions of having to run out mid-class! Luckily I'm in a supportive school and my head of department and hr lady know the full story and have been great. I'm just struggling with my mood and not sleeping great at the moment I swear it's down to the norethisterone as I just feel really blank. Have you decided whether or not to go for the MRI? x

Hello. Glad you got through today. That's the hardest stumbling block, getting into a routine. I am sleeping terribly too, but I think it is the anxiety rather than the drugs. I have spent all day today trying to schedule a second ultrasound privately so I can get another opinion. I think I would rather do that before an MRI. Very hard to arrange, though! You would think these places would be desperate for your money, but I am having to jump through an awful lots of hoops! Hope tomorrow goes well for you at work. x

I know what you mean. I'm based in Birmingham and wouldn't know where to start! When I went to the EPAU on Thursday to check if it had reduced, the usual ultrasound lady asked for a more experienced colleague to do it as she wasn't confident with what she was looking for, which didn't really reassure me! Hope you find someone that can help and here's to a good night's sleep for both of us! x

If you are in Birmingham and want a second opinion and can swallow the cost, you could try this place in Solihull:
mums.me.uk/extra-info/meet-the-team/
I have been there in the past for pregnancy scans and they are very skilled. A gynaecologist performs the scan and tells you what they see there and then. I am from near Birmingham originally and have some family in the area still, so that's why I ended up there a few times! x

Hey, actually my sister went to Mums and said they were good. She told me to go in my last pregnancy, which I didn't, and regret not doing now! We're from just outside Solihull so wouldn't be too difficult. To be fair I trust the surgeon at the women's hospital at the moment. Plus they're a research centre for Tommy's (who we've also been referred to sadly!) so hope they know what they're doing. If in 6 weeks I'm not happy or sure with the diagnosis I'll give Mums a try x

Hi LauLau.
Yes, Mums are great so at least you have that option if you need it. Glad you are happy with your current surgeon though, That helps a lot.
I went for a private scan today. No better news. He said it is a very vascular area caused by the placenta coming away and that area not healing up. Is that what you were told too? Did they give you any hope that yours might resolve by itself?
I am just so afraid of suddenly hemmorhaging, aren't you? It's just horrible. :-(

Something just occurred to me.
Not meaning to be personal, but have you been advised to go on "pelvic rest"? I haven't, but I can't help wondering whether uterine contractions would possibly be beneficial in healing or possibly totally the opposite and cause a big bleed. Not that I am in any way in the mood for anything in that department right now, but if it would fix things, then I would be game!

Angelbabies - how are you doing this week? Hope you are okay. x

Hello. Sorry your scan didn't give you any better news. Mine didnt really give me a cause, just said it could be due to trying to push out retained product which sounds a bit weird to me. They haven't mentioned anything about 'pelvic rest' but seeing as I'm still on - off bleeding from the misoprostol they gave me that's off the cards anyway for now! x

Yes, off the cards here really, but I did wonder if it might be worth considering in the name of healing! Will stick to a cuppa of red raspberry leaf tea instead! x

Haha I tried red raspberry too! Initially when they thought I had retained product they gave me antiobios and I tried red raspberry to help try move things along. No luck though! May have to start again :)

Been thinking about what you said about the possible cause of yours. I think that sounds quite encouraging. What they told me is that my situation is likely a wound from where the placenta detached. In my case, that isn't encouraging as that happened 2.5 months ago. But in your case, if the retained product detaching has made a new wound then it makes sense it would be vascular as it hasn't had the chance to heal yet. I'm not a doctor obviously so perhaps what I just said is totally wrong, but personally I am trying to clutch at any positive straw available and that's where my train of thought would lead me if I were in your situation. x

At least red raspberry leaf tastes nice! Not like the concoction of Chinese herbs I have been given by my acupuncturist. Yuck!

Oh justcurious it sounds like we've we've tried similar things. I had acupuncture too but avoided the Chinese medicine she tried sell me (mainly as it was £9 for a week's supply which I thought was a bit much!). Got pregnant v quickly both times, both times drinking red raspberry tea and red clover tea before ovulation and both times following acupuncture) but both times had blighted ovum so now I've vowed not to do anything when we can finally try again! Am hoping Tommys will be able to give us some answers... And thank you for your message of hope! I am trying to stay positive but really who knows what caused it, if it even is one! And I have read about people with avms healing over time so if that is what is going on with both of us then there should still be hope! xx

Acupuncture certainly seems to help with conception. We were trying for 18 months and the first month I had acupuncture...BAM! Could be coincidence, I suppose. Here's hoping we don't have true AVMs after all and that this will resolve for us. Would be lovely to hear what happened to the people who posted originally.
By the way, what dose of norethisterone are you on? I take 5mg three times per day, which seems like a very high dose. The guy I saw privately the other day said I should also take the Depo shot but I am a bit worried about that as it once it's in, there's no stopping it, unlike with the pills.

Lots of people have said how acupuncture helps. It was within 1 or 2 months of acupuncture each time for us. I'm on 10mg of norethisterone 3 times a day! Not sure why mine is so high but hey ho. Not noticing the effects as much this week but can't wait to not be taking it! x

If only acupuncture could cure this problem!
I sometimes wonder if it is due to the medical management. At the end of a full-term pregnancy, the placenta makes preparations to come away many weeks before the birth. And I guess the same is true to a lesser extent with a miscarriage. But the medical management is so violent and gets everything out in such a short time frame - I wonder if that is what causes this wound at the site of the placenta to be so tricky to heal.
Anyway, enough of that! Hope your first week back at work went well. Congratulations on making it through, and enjoy the weekend!

You might be right but I've read it happens also in cases of spontaneous miscarriage. I think you're just more prone if you've had recurrent miscarriage which is obviously my case. And yes thank god it's the weekend! Time for some much needed rest! Enjoy x

Hey ladies hope your okay?. I didnt recieve any notifications so thought there was no updates. Ive been bleeding heavy or 7 days, i was hoping to stay off progesterone and see if my body could resolve the bleeding on its own. My MRI is next friday. X

Yes, it happens in spontaneous miscarriage too, you're right. And after D&C and after full-term birth. Looks like it is MASSIVELY over-diagnoses, though. I have been spending way too much time on PubMed this week and an awful lots of these vascular areas (by far the majority) turn out not to be true AVMs at all and spontaneously resolve. Usually within about 100 days (see here: www.researchgate.net/publication/12262981_Arteriovenous_malformations_of_the_uterus_associated_with_medical_abortion )

Anyway, would be nice just to forget about it and enjoy the weekend!

Angelbabies - glad to hear from you again. Sorry you have been bleeding. I hope it settles for you soon. Lots of luck with your MRI. Keep in touch, won't you? x

Interesting read! Thanks for that x

Angelbabies - good luck tomorrow. x

Yes good luck angelbabies! Hope it's good news x

How are you doing, LauLau?
I have a follow up ultrasound this Thursday morning. Really hoping it will have shrunk/gone! Has your bleeding settled? The norethisterone seems to be keeping mine at bay (touch wood!).