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? Again struggling to find a specialist and so scared. Thanks so much
Welcome to our group. You have had a tough go of it, the unknown is so hard. While this group has a wide range of AVM locations and experiences, we all share the unknown part, the fear. Many health care providers are very unfamiliar with AVMs which is a good thing I guess. The specialists had dealing with neuro were great, and I got to them really quickly. I went via ambulance from a smaller hospital to a large one, the small one couldn’t get rid of me quick enough!
I imagine some of our members with experience will be able to pass along valuable info for you to consider. We are here for you, while all different we have a lot in common and an understanding beyond most. Take Care, John
Ladies in the @PelvicAndUterine group, can you read Pri’s post and help out at all?
So sorry to hear about your run. I also had a uterine AVM post D&c a few years back. Was scary to lose so much blood and have to deal with losing a pregnancy also so I am sending you lots of thoughts and care.
I think I started bleeding about 6 weeks after the D&C and went to emergency twice before they realised I’d lost so much blood I needed a transfusion. They then scanned and diagnosed the AVM. I can’t remember exact details but I had a surgery done just before the transfusion so the gynae could look at what was going on. Didn’t end up embolising which is what I had kinda hoped for. But apparently he just cauterised the site and it seemed to slow the bleeding completely. It took a few months to start feeling normal again though mainly because of the blood loss (was soaking through maternity pads within about 2 minutes). And went back for a follow up scan a few weeks later and it had pretty much resolved itself. Fertility wasn’t affected as I now have a two year old which happened about 6 months after the AVM pregnancy loss. I do remember feeling a bit torn as to whether to hunt down a doctor that would do the embolisation but it seems the gynae’s view of wait and see was sufficient and it resolved on its own. It is all up to you! Just know it would’ve helped me to feel more at ease knowing of someone with a story where it self resolved (albeit after cauterisation). Wishing you all the best and I hope your journey takes you to positive places eventually.
Thank you so so much for your message - it actually made me cry just hearing some positivity! Thank you for sharing your story - while you in the wait and see did you continue having big clots and bleeding or did yours just calm after the cautherisation? I have some days of lighter bleeding, others with heavy and some with clots so it’s so scary! Just when I think I’m getting better a clot comes along! Anything else you could advise that helped? I am currently resting lots and not really leaving the house for walks etc. Thanks so much again xx
Oh I’m so glad to be able to offer you some positivity. I remember how disempowering the waiting can feel. To be honest I’m pretty sure the bleeding stopped after the cauterisation. It’s definitely a long wait though as it’s hard to feel safe to leave the house and do things out of fear the clots will start up again. I think I was fairly housebound after the cauterisation but possibly also because of the severe anaemia from the blood loss. Transfusion definitely helped though! But I may also have been a little ‘manic’ as I was severely sick with hyperemesis gravidarum throughout the pregnancy so was really loving not feeling nauseous and being able to get out of bed…
The journeys we go on as mothers and mothers-to-be. It definitely ain’t easy.
Did you get a transfusion. Weeks of blood loss sounds like a whole lot! You must feel so tired ?
Hey! How you doing? I’m so sorry I thought I replied! Still doing a wait and see approach but on so many meds and injections to calm the bleeding down and living on what feels like a knife edge… Thank you again for the support and positivity… goes such a long way in times like these as you get to a point where you don’t know how much more you can take xxx
Hello! I’m new here but in an almost identical situation. Pregnant with my first baby, miscarried at 6 weeks. No D&C due to lockdown but then after being mistaken for retained product, I was diagnosed with an AVM 6 months later. I was given the Tranexamic Acid to stop the bleed. Then told to take a double dose of progesterone for a month, now I’m taking a single dose of progesterone until November.
Really worried that the avm will still be there but I haven’t had any bleeding while on the progesterone so keeping everything crossed.
I’m 40 and really want to start my family.
I just wondered how you were getting on now?