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
Congratulations Amanda! I am so happy for you and that Jakob and your family are well. We have been thinking of you! Angela in Toronto
Congratulations Amanda your story is very encouraging as I havnt had a succesful pregnancy yet and have a uterine avm
Hi Amanda, I know this is quite an old post now but I'm desperate for some information to help my very close friend who has just been diagnosed with a uterine AVM following the really upsetting loss of her baby at 20 weeks gestation. She is so scared that she won;t be able to have any children. There does not seem to be much information about and the dr has just told her to two weeks to see if it passes naturally. She's not convinced this will happen as she lost the baby six weeks ago now. I really want to be able to offer some support and provide her with information? Can you help at all? Thank you, Rachael x
Hi Amanda
Thank you so much for sharing your story. It sounds like you have definitely had a difficult obstetric experience! I hope everything has now settled for you and your family?
I’ve also had a complicated one - hyperemesis gravidarum with my second pregnancy which ended at 16 weeks with a termination because of a fetal anomaly. Then just found out I have an AVM from the d&c. So still early stages of diagnosis and trying to find a doctor that has some experience with these rarities! The gynae at the hospital has just sent me off after having a transfusion and seems to think it will all resolve.
Thanks
Mireia
Hi Amanda,
Thank you for sharing your story. I also lived in Canberra. May i know which OB you saw for your prenatal care in Canberra? I just had an uterine artery embolization about 2 weeks ago. I am hoping to get pregnant again but since the embolization, i’m still spotting.
Thank you!!
Teresa
Hi Teresa
I saw Liz Gallagher, she knows about my avm, and has a colleague she went to uni with in Newcastle, Jillian Spilsbury, whom i travelled to for diagnosis, and then saw Lourens Bester in Sydney at St Vincents for embolisation, then Liz supervised me during my pregnancies. She’d be a good person to speak to for your care as she knows my issues. And no one at TCH did when I was diagnosed, but I think my experience has taught them a little.
Also, the best Sonologist in town is Wes Cormick at Specialist ultrasound in Barton. He’s experienced at assessing for AVM and the high velocity blood assessment via ultrasound. He’s my best suggestion for ultrasounds. He was also able to detect (strictly you need MRI) placenta accreta which was attaching the placenta over my AVM as a protective mechanism, so then Liz was able to plan for that eventuality too.
Happy for you to send me an email directly
Amanda
Amanda Galbraith
Pharmacist
B.Pharm. GradCertPharmMgt. GradCertDiabEd&Mgt GAICD