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AVM Survivors Network

Pregnancy post uterine avm


#1

Hello everyone, but especially all of the women out there with AVM's in their uterus. I though I would post an update about my recent, and fortunately successful, pregnancy.

A bit of background - I had a haemorrhage when pregnant with my daughter in 2007, and as she was 36+3 weeks when I had the bleed, my waters were broken and Amelia was born that day. No one ever knew the cause of the bleed.

Then in 2009, I was 8 weeks pregnant when I had a life threatening haemorrhage, and was within minutes of bleeding out. Unfortunately, in order to save my life, the pregnancy was terminated. Again, no one knew what had caused the bleed, but I hunted and hunted and eventually found out that I had a uterine AVM, and that it had "burst" causing the bleeding. Additionally, I discovered I have von Willebrands disorder, which is a bleeding disorder, so when the bleeding started, this complicated to me ending up in DIC (disseminated intravascular coagulopathy, or bleeding out).

I found a radiologist in Sydney, Lourens Bester, at St Vincents Hospital, who looked at my MRI and referred me to a fabulous obstetrician in Newcastle, Jillian Spilsbury, and she has treated patients with them before. So, she did ultrasound scans of the myometrium (lining of the uterus) and found the AVM, which showed fast flowing blood vessels in the myometrium, and referred me back to Lourens who did an embolisation.

Now, I know those of you in the UK and US do this under a general anaesthetic, but here they just gave me a local, and the pain was so bad that I passed out, so if I ever had one done again, I would demand a general, but Lourens was great, and I went back to Jillian, who confirmed that it was resolved.

Then I consulted with my OB here in Canberra, who went to uni with Jillian, and we planned what we would do during a pregnancy. Once all of my doctors (I also have a bleeding disorder and Ashermans Syndrome - uterine/cervix scarring, I know... terrible obstetric situation) we decided to have one go, and see what would happen.

So, we got pregnant fairly easily, and started on 4 weekly ultrasounds, that got closer to 3 weekly as I got further along. It was evident at about 18 weeks, that I had a placenta accreta, where the placenta adheres to the uterine wall, and this accreta was directly over the AVM site. My sonologist (specialist sonographer) believes that the accreta and the AVM are cause and effect. That is, because I had the AVM in the myometrium, the placenta adhered over the top. As a result, the placenta was also low lying (as it couldn't move up as the baby got bigger), and so with everything else, a planned c section was booked for 36 weeks. It was fortunate I was being heavily monitored, as an accreta discovered at delivery can cause severe haemorrhaging.

Unfortunately, at 33+5 weeks, my waters broke, and I went in to spontaneous pre term labour, so my son was delivered the next day via C section. The placenta adhered and had to be carefully separated. I also lost a fair bit of blood.

However, at the end of the day, my son, Jakob, is now 8 weeks corrected, or 3 months from birth, and we are all well. This is it for me, this pregnancy was risky enough, so we are not having more children, but I am blessed with the two I have.

If you have a uterine AVM and you find this website, please feel free to contact me for support or advice

Amanda Buykx

Canberra, Australia


New Member: Pregnancy Post Uterine AVM
#2

I had a miscarriage at 12 weeks and was diagnosed with a uterus avm on July 17th of this year. I haemorrhaged at the hospital. I recently had an ultra sound and the the doctor was and the ultra sound tech. were amazed as they had never seen this before...not helpful.
I have my first doctor's appt on wednesday and need to know what to ask?
I have a beautiful 16 month old girl. She is amazing. I would love more children.
A few things I need to know....could this happen to me at anytime? Can I have sex????
I have been doing some reading and many people who have avm in their brains have more than one....have you heard of anyone who has one in their uterus having more than one???
So many questions...thank you soo much for posting some hope. I am not ready to just give up and have a hysterectomy.
Holly


#3

To contact me, please send me a message, as it seems that comments to this don’t get emailed to me, but messages to me do.thanks, amanda


#4

Hello my name is Jessica and I came across the AVM survivors website and your name there. 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.

Thank you
Jess


#5

Firstly soo sorry for your loss.
I just befriended you and once you accept I can send you a personal email of what I have learned. I do have a uternine AVM - I have not had an embolization.
and some hope....I am 35 weeks pregnant.
I would love to share what I have learned and who I talked to.
Holly


#6

Hi Hotrod,

After getting induced at 17 weeks pregnant, due to baby having severe swollen ventricles of the brain, I was still bleeding up to 10 weeks later.

Finally after 10 weeks I was diagnosed with a uterine AVM. It seems none of the doctors know much about it though.

Doctors have given me drugs to stop the bleeding and it has now stopped, for 5 days now, But am just waiting for the heavy/clotting to come back. Fingers being crossed it heals but am feeling anxious.

Doctors do not want to do a embolization as I haven't had children yet and don't want to risk my fertility.

I would love to hear your story, was there anything you could recommend to try naturally?

Did you have to wait long to have children, its kinda just put my life on hold after being pregnant starting to prepare for a baby now to be told, you could be at risk of being able to have children.


#7

Hi Zed2002, how are you doing? I wondered where you live, so we can try and find you someone who can help you? The way I found my radiologist was by googling AVM and radiologist and I found one who specialised in AVM’s. My embolisation was horrendous (demand a general anaesthetic) but it did solve the AVM issue, and block it all off. Then I had to find an obstetrician who knew a little about them too, but it is possible to find if you make the internet your friend. I had to travel a lot, 3 hours to Sydney for embolisation, and 5 to Newcastle to see the obstetrician who had managed other women with AVM’s, but then she started to liaise with my local OB, and my 2.5 year old son is now running around making a mess, so it is possible! Don’t give up, you just need to become your own advocate, and find people who are as passionate about your opportunities as you are.


#8

Hi Jess, are you still on this site? I just read your post from last year, and wondered how you were doing with it all? Amanda


#9

Hi Amanda,

I live in Hamilton, New Zealand.

Any information you could provide would be much appreciated as I have non, and am not due to see the specialist for another couple of weeks.

Have you been able to get pregnant after your embolization? I am a bit nervious of that.

I am wanting to try and let it heal naturally if this is a possibility, as I don't think mine is really severe. Has anyone else been able to do this? Anything to recommend for the healing process?


#10

Oh, how ironic that you live in Hamilton! I came there in March 2011 for the balloon festival (we fly balloons here in Australia, Canberra) and in fact, my boy is now called Jakob Hamilton because he was made there :wink: such a beautiful place
He was conceived after the embolisation, and for me, that was the only safe way, but I’d like to share more with you. Could you email me offline? ■■■■■■■■■■■■■■■■■■■■■■■■ and we can chat more?
Amanda


#11

for almost two years after my AVM was found I searched high and low for information. My doctor told me I should avoid becoming pregnant indefinitely. I carried my daughter to 40+3 weeks. She was the only baby born of a twin pregnancy. The other placenta was attached to the AVM and judging by the size of the placenta that it stopped developing around 19 weeks. At my 6 week check my HCG was at 30 still. I had the embolism done and had to pass the other placenta vaginally, which required my cervix to dilate to 5cm. I had one miscarriage back in 2005. But it was so early that the test was only very faintly possitive. The first dr that I talked to at the practice said that I could become pregnant again but would need to take precautions to insure that any subsequent pregnancies did not develop at the AVM site. How that is accomplished in not sure. that doctor left the practice, and now the doctor that I am seeing so I should not become pregnant under any circumstances. But the information that I have found online goes both ways. I was 22 when I found out that news, I am now 28. Every year when I go for my annual check is very depressing. I’m trying to find out now I’d there is any way I can carry another child. Is there someone I can talk to? I am in the US in Colorafo, if that helps.


#12

*colorado


#13

Hi Amanda did the doctor make you use contraceptive pill to skip your periods… I am so scared to go my menstrual cycle…I Dont understand this and Dont know anything.


#14

Hi thanks for the update. Gives me hope as I also recently had a miscarriage and continued to bleed for 2 months . I have just been told I have uterine AVM . They started me on the contraceptive hoping it will heal itself . I don’t have kids yet so avoiding surgery at all costs . How successful are embolization?


#15

What medications they put you on to stop the bleeding? Thanks!