Sorry I may have posted this already I’m just trying to figure this site out.
Hello my name is Jessica and I came across the AVM survivors website. I’m having some great difficultly finding information on uterine AVMs! Here is a brief breakdown of my very unfortunate history over the last year. I guess I’m just wondering if you have any more information you can give me or suggestions some of your drs have given you.
On November 27, 2012 I had to deliver our stillborn son at 27weeks, they could not tell us what actually caused his death.
my first period came December 28th and the bleeding was so heavy I went to the hospital unsure if there was something else wrong. They discharged me saying it was just a heavy period but I believe now this was the start of the AVM.
I got pregnant again in January very quickly and was told it was twins but one did not make it past 7 weeks, I immediately started having episodes of bleeding which were continually blamed on the passing of the twin.
I started having “floods” in March which resulted in me heading to emergency again but after ultrasounds showed the baby was fine they could not explain the amount of bleeding I would have. I also have a uterine septum that makes my uterus into basically two sides and shaped like Micky mouse ears so they thought I was holding in the bleeding till my uterus could not take it any more then I would have these floods but as long as they kept stopping eventually then they had no diagnosis for me
April 22, 2012 I went into labour and we had to deliver our son at 16 weeks 3 days, he was to young to survive. I now had to bury my second son and the reason for his loss was completely different than with our first son.
I have a routine follow up ultrasound 3 weeks later and am told I have retained product and need an immediate D&C which is done by suction as gentle as possible I’m told.
2 weeks later I’m in emergency again with flooding that night they do another very aggressive D&C for over and hour and half.
1 week later I’m back again with clots the size of softballs and excessive bouts of bleeding…they still send me home.
2 days later I start hemmoraging and the ambulance needs to be called, I have two blood transfusions and giving clotting medicine including antibiotics. They keep me in the hospital and say they are treating me for infection and that is why I’m bleeding so much but they are just guessing at that point. There was mention of something showing up on my ultrasound with a high velocity pocket of blood but it was not discussed until the day I’m to be checked out of the hospital I have another flood and they finally discuss what an AVM is and they want to do an embolization in order to hopefully preserve my fertility. They warn me that is could also wreck my fertility but at that point the alternative was taking out my uterus.
So I have the embolization done under local anesthesia and it was horrifying, now I’m 2 weeks post surgery still bleeding a bit everyday and my leg is only now starting to not hurt all the time. Still some nerve damage but they say that will heal. They also have me on birth control which I’m not to stop for about two month straight to see if that will give my uterus a chance to heal. So I’m left with no real follow up or plan other than I’m waiting to see a ne GYNO and she is setting me up for an MRI and will do my septum surgery as well (this can be a factory in loss but was not the cause of either of mine, we just want to remove the added threat).
We want to have a baby so very badly, now with this AVM and so little info I’m confused with whether it will be possible or will I be risking my life and another baby? Has the embolization effected your fertility at all? I understand if you are no longer responding to this site, I just thought I would throw my story out there.
Hi Jessica - I am so sorry to hear what you have been going through. I recently went through two embolizations for the very same reasons you did. I know the pain you speak of. While I am still recovering from my second embolization and trying to get back to a normal state (whatever that might be), I am told that there have been successful pregnancies after embolization for uterine AVMs. I am keeping hope. I believe there are people on this site who have had successful pregnancies. One suggestion might be to talk with a doctor who specializes in perinatology. I did this and was advised that it is possible.
Thanks Luna! Can I ask what made them decide to embolize again? They told me I may need it again while I was in the hospital but never ended up following up. I’m still bleeding and it’s been 2 weeks though I’m not having the “floods” anymore.
Hi,
I’m so sorry to hear about your losses.
My daughter was stillborn at 24 weeks, my water broke at 22 weeks. I don’t know why my water broke or why she passed away. I had retained placenta that turned into a uterine AVM. I had it embolized on February 2nd, and became pregnant with my daughter March 18th. I carried her to 38 weeks. She is now 6 months old. I’ve had no issues with my uterine AVM since embolization.
If you have any more questions feel free to inbox me.
Of course Jessica. After my first embolization I continued to bleed. At first it was mostly spotting but everyday it seemed to get heavier. After a little over a month I had an episode of massive hemorrhaging. It was very serious with large clots. I went to the emergency room and IR did another embolization to stop the bleeding. This time they used more permanent embolizing agents. Its been 4 weeks since my last embolization. I was also on birth control for 3 months continuously, but have been bleeding since the end of March. About 2 weeks ago, my doctor suggested another D&C since I was still spotting, however after getting a second opinion we decided it would be very dangerous. Instead I waited until the end of my last pack of birth control pills and for my cycle to occur. So far my period has ended and I have almost had three whole days of normalcy (no bleeding). Things are looking up. I know everybody is different, I think for me, it's taken my body a while to heal. I hope this helps. I am not a patient person and this has truly been an exercise of my patience. :)
Yesterday my bleeding turned bright red again and I was sure I was going to hemmorage again last night, I’m tired of feeling like a china doll that’s going to explode at any minute. They warned me they would probably have to go back in with stronger stuff because the AVM was bigger than they expected. Been on the pill for 3 weeks now maybe my period is just trying to break through, my most frustrating thing is I have no GYNO right now to follow up with. I too am not patient so this wait and see is not only scary but frustrating.
The night I hemmoraged was so scary for my husband and I that now I worry it will happen anywhere at anytime or I will be alone. We want to try for children again sure but I’ve been bleeding since we lost our second son and I’m starting to just thing this uterus is giving up.
Thank you for taking the time to answer my questions, this is the first time I’ve every joined any kind of support group since we lost the boys. It’s a pretty vulnerable position.
When I hit reply to this is that “in boxing you”? Sorry first time on one of these sites! I’m so sorry for your loss but so happy to hear of your beautiful baby you have now. They didn’t have any answers for with why our son past at 27 weeks and I got pregnant probably just over a month after we lost him so we are not sure which pregnancy caused this but I’ve been bleeding since we lost him April 22 and still bleeding almost 3 weeks after embolization and I’m on the pill so I’m worried I will have to go back in for another embolization with a thicker stuff…they don’t know the infertility rate when using the thicker agent I guess. Do you remember bleeding for a long time after?
Hi Jessica,
I just sent you a friend request.
My bleeding stopped as they did my embolization. What substance did they use with you? They used foam with me.
I sympathize, I know the emotional roller coaster you are on. One thing I learned through the situation was that while my health was unpredictable, it helped me to be prepared if a bad situation occurred. I had a plan in place where if I hemorrhaged again. I knew where I would go, and what exactly I would say to explain the situation and what medical needs to ask for. I also learned from many people on this site that if you don't like what you are hearing from the doctors advising you, seek more opinions. Many folks here have said they have sent in their latest scans to different places to get opinions, so it sounds like travel isn't always required. If you are comfortable with the IR who did your first embo try to get the same one, or get a referral from someone you trust for an IR in your area that is highly regarded. I might also suggest finding a Gyno you can really feel comfortable with. I have sought advice from hematologists, perinatologists, general practitioners, interventional radiologists and while they have all been helpful they do refer me back to my gyno due to the location of my AVM. I hope this helps. I have found that the many different opinions I have gotten have given me some comfort.
I’m not sure where you’re from but have you check out Dr.Wayne Yakes? He was actually the first one to bring emboS to the states. He’s a sweet heart and very understanding. We were looking into aptitation and he saved it. He’s in Denver. If I can help in anyway let me know. I’d also like to offer you my condolences; I know that can take its toll on you mentally and physically.
Me too! I just went through an embolization a few weeks ago. It was following a failed pregnancy (7 weeks) and a D&C. I have a follow up MRI in about 6 months. We have been told not to try to get pregnant until at least after that scan. My husband and I are very anxious to start a family. I'm hoping to learn a little more about pregnancy after an embolized uterine AVM.