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Original poster

Uterine AVM after surgical management of miscarriage

107 replies

Drinkypops · 22/01/2014 21:31

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

OP posts:
Angelbabiesimissyou · 19/10/2017 07:37

Not yet i have been told my results have now been passed to anothet consultant. X

justcurious40 · 19/10/2017 16:38

Blimey, it all takes its time, doesn't it?! Hope you are okay. x

Angelbabiesimissyou · 19/10/2017 17:07

Its been a lifetime lol. Hopefully we all get good news soon. X

justcurious40 · 24/10/2017 14:38

I hope you are both doing okay and, Angelbabies, I hope your scan results have come through and are more encouraging.

Angelbabiesimissyou · 24/10/2017 15:32

They have come back and the AVM is very small now so hoping it will just go on its own and MRI indicates i have pcos which we was aware that i possibly had it due to my hormone levels and annovulatory cycles but never confirmed in US. Im now back on progesterone and metformin and another course of antibiotics xx

LauLauH · 24/10/2017 18:56

Good news that your avm is much smaller angelbabies! Hopefully it will go by itself. I have pcos too (known since I was 17) but cycles are pretty regular. Have they given you metformin to help with ttc? We have our first appointment with Tommys tomorrow and it's something I'm going to enquire about as I have read it helps with early pregnancy loss xxx

Angelbabiesimissyou · 24/10/2017 19:58

Thank you hun. Well pcos has always been a suspicion and always mentioned by my GP and fertility consultant because of my LH:FSH ratio and the fact i didnt ovulate for 8+ years whilst off contraception. But now this just confirms the issues. Well i have heard that too and taken it before but my bowel disorders couldn't handle the side effects of metformin, but i have heard its good for regulating hormones, cycles and has helped some ladies with losses before. Keep us posted babe. X

justcurious40 · 24/10/2017 20:34

That is such great news! I am so pleased for you! Have they ruled out the placental site tumour and choriocarcinoma based on this? So. so happy for you!

Angelbabiesimissyou · 24/10/2017 20:57

No they haven't ruled out the others yet as was still positive the other day but they don't want to interfere the AVM by doing biopsy. So basically waiting.x

justcurious40 · 25/10/2017 08:27

Well, it sounds like it is heading in the right direction anyway, so that is great news.

Are you both still spotting? I am and it is getting really annoying now! I can go several hours with nothing but then red blood again. I don't know if it's from the "AVM" or the norethisterone/hormone imbalance.

Angelbabiesimissyou · 25/10/2017 08:42

Ive bled continously hun for over 9 weeks but actually stopped last two days and must be norethistone, but i am having severe lower abdomen pain. X

justcurious40 · 25/10/2017 15:05

Sorry to hear that. It is such a long time, isn't it? My miscarriage was on 10 July and I have hardly had any clear days since. Here's hoping it will all be over and done with soon. x

Angelbabiesimissyou · 25/10/2017 15:51

Its been so long aint it. I hope get to the light at end of the tunnel soon x

LauLauH · 25/10/2017 15:59

Still spotting. Worked out today haven't actually had a proper period since May. Scan next week to find out what's going on praying to god they say I can stop taking norethisterone worst drug I've ever been on!

justcurious40 · 25/10/2017 19:43

Can I ask what you mean by spotting? Is it like a light flow or just there when you wipe? Sorry for TMI but I don't really know what it means! Mine is basically just there when wiping, sometimes more sometimes less. Hate it!

justcurious40 · 01/11/2017 20:50

How was your scan, LauLau? x

LauLauH · 01/11/2017 21:11

Thanks for remembering! It was good and bad. Good is there is no vascularity so likely not an avm, bad is there’s still about 2cm of retained product! They’ve referred me to a specialist to see if I can get a hysteroscopy to get it removed... So still going on! Am off the norethisterone though thank god! Will let you know if that improves the spotting or not! X

justcurious40 · 02/11/2017 19:24

That sounds like good news. Retained product is a lot easier to deal with than an AVM! I think that is where I am at too. Reckon a lot of retained products get misdiagnosed as possible AVMs. I hope you can get it sorted soon. I am off the norethisterone now too. Hate the stuff and will not take it anymore! x

justcurious40 · 08/11/2017 18:28

Hope you are both okay. I have another scan tomorrow. Fingers crossed!

justcurious40 · 09/11/2017 17:10

Good news. The scan was fine and there is nothing left to see. Such a relief! I hope you both get some more positive news soon and wish you lots of luck with TTC again in the future. x

LauLauH · 24/11/2017 18:04

Yay that’s brilliant news! As soon as I was off the norethisterone I had a period and the retained product came out pretty much straight away! Had a scan which confirmed it on Monday. Thank god it’s over (although can’t quite believe it as it’s been so long!). The consultant I saw said she thinks AVMs are over diagnosed and seems to be the case for us! So glad the news has been good for you too xx

justcurious40 · 05/12/2017 21:34

Ooh, only just saw this update. I am so pleased for you. What a relief. Yes, it definitely seems like "AVM" is bandied about far too casually, scaring the bejeebers out of people like us who go on to Google it and panic! So, so happy for you. I wish you luck on your TTC journey when you are ready to try again.

Angelbabies - that is 2 down, 1 to go! I hope you have had some better news since you were last in touch and that you have a good outcome from all this too. Flowers

Preeya8 · 07/07/2020 22:07

Hey everyone, I am so glad to have come across this group after the worst three months of my life.

I had a missed miscarriage in May after 8 weeks of being pregnant, had the D&C procedure followed by bleeding for three weeks. It stopped for two days so finally thought my life could go back to normal but then the bleeding started heavier again! Had a scan an they thought they could see retained product and said I may need another D&C unless it passed naturally. A week later I had a hemmorage at home passing lots of clots and blood. Taken to A&E and scanned they said they couldn’t see retained product however I had a potential AVM acquired from the D&C.

I stayed in hospital for 10 days, had another hemmorage and got put on transemic acid to slow the bleeding as my gyno wanted to take a wait and see approach due to the risk of embolisation on fertility. Bleeding started calming with small episodes, so I came home and stopped the medication. I have been bleeding for 2.5 weeks since and my radiologist is saying to do the embolisation but my gyno is saying to take a wait and see approach as he thinks the embolisation May shut down my ovaries and impact my fertility forever. I am so confused and not sure if bleeding so much (having some days of clots, some days heavy bleeding) is normal during a wait and see or if I am at risk.. Has anyone gone through this recently or have any consultants they would recommended in london?

Struggling to find a specialist and so scared of whether this can clear or doing the op will mean no kids in future. Thanks so much

Lolalu09 · 30/05/2023 20:02

Hey girls,

I know this is such an old post but I have been told I may have avm in uterus due to my c section 4 months ago. Ive been bleeding since.

How did it all go for you guys and @Preeya8

My scan first showed fluid and maybe retained products and now I had my mri there saying 'I may have avm' and been referred to vascular clinic.

I've just had my baby at 28 and I'm so worried about my fertility.

Francescarae · 13/03/2024 12:42

Hi all,
not sure if anyone will see this as it’s old but I had a D&C after a missed miscarriage which happened at 9 weeks, had the D&C at what would it been 16 weeks and woke up in ICU due to an AVM, I had a blood transfusion and I am waiting to see the consultant again next week, I’ve had a wait 8 weeks for this appointment, I’m wondering what the outcome was for you all? My consultant says it’s extremely rare. This was a very wanted IVF pregnancy and we have embryos frozen so I am really worried about the future as we are so desperate to have a baby.

thanks xx