Uterine AVM after surgical management of miscarriage

[Drinkypops]

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

[bakingtins]

drinky I'm very sorry you have lost your babies and now have this hanging over you, it must make it very difficult to move on. I didn't know what AVM was and had to google it, it sounds like it is pretty rare. Have you been offered a consultant appointment to discuss the findings?
I hope you get the answers you need and a plan to move forward very soon.

[Drinkypops]

Thank you.
I've got an appointment in 6 weeks. I have been put on norethisterone, to (hopefully) stop the bleeding and reduce the mass. If it hasn't reduced after 6 weeks, surgery will be discussed. The hospital didn't seem to think they were that rare, but as you say, everything I've come across says it is (although what I have come across is limited!). I think I just want someone to say they've had it, resolved it and gone on to have a healthy pregnancy (wishfull thinking I know!)

[Natch778]

Hi ladies, in sept this yr I had a mmc at 18 wks & so labour had to be induced. This was my 1st pregnancy & as if this wasn't traumatic enough 4 wks later I started to gush blood & huge clots so had to be rushed to a&e, the scan showed Retained products so I was advised to have a d&c & told that this can happen at 18wks gestation as the placenta is firmly attached & not ready to come away. After d&c I had some cramping & light bleeding but I was comforted at the thought that everything was going to be on the mend. Until 3 wks 5 days later, I got my 1st period, I thought this was a good sign that my body was finally getting back to normal with a fairly normal period, i was bleeding for 9 days when I suddenly got another huge gush with huge clots, I was soaking through 4 maternity pads in the space of 30 mins & it showed no signs of stopping so hubby had to call for an ambulance, it was horrific. I was admitted to hospital & given tranexamic acid & mefenamic acid to stop the bleeding & within an hour it had stemmed the flow.
They did a scan & it has shown an area of pronounced blood flow which they have said could be a possible AVM? Although they have just discharged me with tranexamic acid & norethisterone tablets? No talk of a follow up appt or possible surgery or anything? I'm worried as I really don't want to bleed like this again, I don't feel like going anywhere coz I'm so scared this will happen when I'm out.
Was just wondering if anyone else has had an AVM & if it rectified itself in the end & how long it took? I obviously want to start ttc again at some point.
Thanku in advance for any advice. x

[justcurious40]

Hello ladies.
Can you tell me what happened for you in the end?
It looks like I might have an AVM and I am scared witless.

[LauLauH]

Hi all,

Justcurious I'm in the same position as you. Found out this week I might have an avm. On Wednesday I was due to have a d&c to remove retained products from a miscarriage I had at 11 weeks in early August - literally got to the anaesthetist's room and the surgeon came out saying she wasn't happy doing the procedure as the ultrasound suggested I might have an Avm, although they can't be sure. They've put me on norethisterone for 6 weeks and got to go back for a scan early November but also terrified :( Doesn't help that there isn't much info out there about it!

[justcurious40]

Hi LauLau,
Sorry for your loss. This AVM business is so scary, isn't it? And, as you say, not enough info out there at all. I have been told I should have an MRI to diagnose it. Have they given you any advice on limiting strenuous activities, etc? Nothing was said to me about that, but I am wondering and have no point of contact I can ask!

[justcurious40]

Can I ask if your hcg is zero even with the retained products? Mine is 1 so they are basically ruling out retained tissue based on that.

[LauLauH]

They've not said anything about limiting strenuous activities at all (to be honest they didn't give me much information as typical NHS nurses and doctors were rushed off their feet). Two weeks ago I still had a positive pregnancy test but tested negative this week. They did blood tests to check the hcg level but I don't know the result. As far as I could tell they really don't know if it is or not. As part of the d&c on Wednesday they gave me misoprostol which obviously sparked a big bleed and some tissue came out. I demanded another ultrasound the following day as I assumed that if it was retained product then it may have come out (sorry TMI) but they said that even though it had reduced in size there was still a 1.5cm mass with lots of veins so at the moment it's a wait and see game. Am praying that when I go back in 6 weeks it's resolved itself, as I've read that can happen, but so worried. Hubby and I don't have any children yet (this was my second miscarriage this year - I had to have medical management for both) and terrified of this affecting our chances!

[LauLauH]

Can I ask where you're based? Have they given you any advice at all? I've not had an MRI mentioned but guess they'll wait and see what shows up in the Ultrasound in 6 weeks. So gutted this week was hoping after the d&c I'd be able to draw a line under it all!

[Angelbabiesimissyou]

Hey ladies im in the same boat and havent found anyone in the same situation. I also have bee diagnosed with AVM and also being monitored for a placental site tumor that possibly has developed into choriocarcinoma, i am awaiting my MRI to see the extent of the AVM. I am also on norethistone but still keep bleeding. Im waiting to see if anyone has had success and gone onto have a successful pregnancy ive had 8 losses and 2 successful pregnancies. X

[justcurious40]

Hello. I am in Devon. They didn't spend much time explaining it to me either. Would love to get a second opinion of how likely an AVM is, but not sure how to go about that. It's good that yours reduced in size. Surely that is a good sign? Did you also have a D&C back in August? I had medical management on 10 July. Took 5 weeks to get a negative pregnancy test so I don't think it can be something retained but I have read stories of people with retained tissue and zero hcg, so who knows. Anyway, let's keep in touch and fingers crossed for both of us that it's something simple that will resolve itself.

[Angelbabiesimissyou]

I had a erpc in august im now 5 weeks 1 day since surgery and still getting positive tests. X

[LauLauH]

I didn't have a d&c, I had medical management on 7th august. Like you it's taken 5-6 weeks to get a negative pregnancy test, and took about 4-5 weeks for the bleeding to stop (although now it's obviously started again due to them giving me pesaries to prepare my cervix for the surgery I then didn't have!) I'm hoping the fact that it's reduced is a good sign but I've had some really really heavy bleeds so I suspect it could be a bit of both. The surgeon did say that sometimes if you have retained product your uterus can start forming capillaries and veins around to try and push it out? Absolutely fingers crossed for both of us that it resolves itself let me know how you get on!

Angel babies so sorry to hear about your losses. I hope your MRI brings hopeful news. How are you finding norethisterone? I think it's making me an emotional wreck (although part of that I guess is the whole situation). I've read some stories on another forum (avm survivors network) of people having successful pregnancies after an avm so I think there is hope.

It's weird as everything on the internet says this is incredibly rare yet here we are, 3 people going through the exact same thing. I'm guessing it's something doctors are becoming more aware of. Hoping for good news for all of us let me know how you get on xx

[Angelbabiesimissyou]

Ive had to be on it a few times as ive always suffered with bleeding issues/hemorrages. I am still bleeding whilst on norethistone. Good luck ladies. X

[justcurious40]

Hi LauLau,
So is your surgeon thinking it might not necessarily be an AVM? My gyno is not sure. That is why they want the MRI. It's possible it is infection but my bloodwork shows no sign of infection and no symptoms either really, and it's possible to be retained tissue but less likely with low hcg. I so hope it's not an AVM!

Angelbabies - really sorry for what you are going though. How can this thing be considered so rare when 3 of us have popped up in as many days??

I found a Facebook group that might be useful:
www.facebook.com/groups/UterineArteryembolization/

Are either of you worried about carrying on with normal acitivites? LauLau, you said nothing was mentioned to you. Me neither. But I asked an online doctor if it was okay to go swimming and they said it would be prudent not to, so now I am feeling rubbish about how fragile this condition seems to make me.

[justcurious40]

Angelbabies - why do they think you have a placental sit tumour? Is your hcg still high?

[Angelbabiesimissyou]

Its not that its practically high but it still raised and keeps raising and i have no retained tissue and an AVM can come from a placental site tumor. X

[LauLauH]

The surgeon said she wasn't sure but that the ultrasound was 'suggestive' of an avm as the area was very 'vascular' (seriously this is how they told me I had no idea what they were on about!). I think that's why they want to wait and see what happens in 6 weeks. I assume after that if there is still something then they'll do further diagnoses. I have heard of people having retained product with no hcg and it coming out with their next period so I guess it can happen. Fingers crossed that's the case for us!

I'm not worried about carrying on normal activities. if there was a risk I'm sure they'd let us know. I won't be running a marathon but I think gentle exercise should be fine. The online doctor was probably also being cautious (you have to wonder how much an online doctor would know about uterine avms anyway seeing as our surgeons/gynos who are presumably at the forefront of their fields don't seem to know that much!).

[justcurious40]

This might be encouraging for you both:
www.researchgate.net/publication/291097309_Pregnancy_after_uterine_arteriovenous_malformation-case_series_and_literature_review
I am not trying again, so don't have this issue to think about, but it looks like successful pregnancy after AVM is very possible.

[justcurious40]

Angelbabies - I hope you get some good news at your MRI.

I am terrified to have an MRI! Never had one before and I am very anxious. Wondering if I can just give it a miss and rescan in 6 weeks but the wait is hard too, isn't it?

LauLau - have you had any periods since the m/c? I have had two so I guess the chance of anything retained is less.

[Angelbabiesimissyou]

Thank you hun. You are involved in the decision of treatment/management plan so if you want to avoid a MRI that would be doable if thats what you want hun. X

[LauLauH]

Thanks justcurious it definitely helps knowing there have been success stories! Haven't had any periods as only just started testing negative on hpt and they've put me straight on norethisterone which means I won't have another one until after I come off it in six weeks. Just want my cycles back (although one plus point is my skin has never been better!). And yes it's the waiting game that's driving me mad at the moment! Especially as we're trying and it feels like everyone around us is popping babies out left right and centre! If you do opt for the MRI then I hope it's not too bad. My husband had one for a knee issue and says it's not as bad as it seems.

[justcurious40]

Thanks for your messages.

I am finding this really hard. I have bad health anxiety at the best of times. I am just spending my whole days googling and trying to see if it could be something else, or even if it could be something worse.

How are you both coping with the anxiety and uncertainty? Were your doctors particularly alarmed about it?

[LauLauH]

Justcurious I understand how you feel! I'm also feeling anxious (I suffer with anxiety at the best of times) and also quite frankly I just feel really down. I have some proper good crying sessions over the past 3 days, none of which is helped by the stupid hormones I'm now taking. The fact we've now been trying for a year and all I have to show for is 2 blighted ovums and a possible AVM doesn't help, hubby remains optimistic we'll get there but I'm finding it hard at the mo. Especially as this miscarriage is dragging on and now I've got another 6 weeks wait when all I really want to do is start ttc again, Have been off work since Wednesday and dreading going back tomorrow. Only a couple of colleagues know why I was off and dreading them asking how the op went (also worried about having another massive bleed!) though part of me thinks it may be good to get my mind onto something else. I know what you mean about googling too - I've done the same. My doctors didn't really give much away. I think we've just got to get off google and treat ourselves kindly until we know for sure what's going on. I guess that if it is an avm there are things they can do, like embolization so there is hope!

[justcurious40]

LauLau, sorry you are finding this so hard too. It's horrible not knowing what is going on, isn't it? I hope that your first day back at work goes well. I understand your fear of having a bleeding episode. Have they put you on tranexamic acid? That stops bleeding. You can ask your GP for a prescription if you don't have one. They give it to girls who have heavy periods, so it's a fairly commonly used drug. Good luck!