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AVM Survivors Network

Vaginal AVM

I’m looking for information on others recovery process after having ethanol embolization on a vaginal AVM. I’ve been treated in parts of my legs, arms, hands, head, neck and more recently started treatments on a vaginal/rectal AVM. I’ve had three embolizations on the area and each recovery post treatment has been completely different. What is “normal” if there is such a thing? Any insight on different symptoms, things to look for, etc is appreciated!

EONeal, this location is very rare, so only a few members have reported it.

You may wish to friend:

Essie – http://www.avmsurvivors.org/u/Essie
Etiella – http://www.avmsurvivors.org/u/etiella
Kikko - http://www.avmsurvivors.org/u/kikko

Hi! I have had many treatments on my vaginal VM. I have never spoke with anyone else that has had anything similar. I thought I was the only one. I am treated with the foam not ethanol. Are you having any heavy bleeding episodes? Where are you being treated and with what doctor? Every recovery is different for me as well. I will be happy to answer any questions you may have.

Tara,

I’m afraid none of the folk listed above have logged into AVM Survivors since 2013. Do try to find some current members you can chat to.

Very best wishes,

Richard

Richard,

Thank you for letting me know.

Tara

Wow, I definitely haven’t logged in for years, but this message reached me!

I was treated with ethanol by Dr. Yakes just outside of Denver, CO. My
malformations are head to toe on both sides of my body. I have/had both
vaginal and perirectal and they are not fun. Yakes treated my vaginal one
twice, but the ethanol on the tissue caused problems the second round. I
ended up with a neurotic labia and had three surgeries over 11 days to
treat the necrosis. Fortunately because of what had to be removed, the
malformation became completely asymptomatic for years. My surgeries were in
2013. I’ve recently started having symptoms again leading me to believe not
all of it was treated.

Now I’m gun shy and have had two more children. We also lived in Denver at
the time. Living in a rural Idaho town without many resources we’ve put off
continuing any treatments even though pain relief would be wonderful.

If you have any questions about my story/experiences please don’t hesitate
to ask!!

~Erin O’Neal

2 Likes

Erin,

I am so happy I was able to reach you! I apologize for the delayed response, I was dealing with a bunch of medical stuff and getting things in order for my next surgery. I just had my surgery done at Lenox Hill Hospital this Wednesday and I’m home now recovering. I had an angiogram done and they found an artery that is feeding my malformation in my vaginal region. They typically treat the vascular component with direct stick with foam instead of ethanol, I have had somewhere around 30 surgeries and there was only one other time they found a feeder artery that connected to my uterine malformation. So I was pretty excited that they were able to find an artery that fed my vaginal malformation. My doctor closed the artery down with something called microspheres, this is my first time hearing of this technique. My doctor seemed to feel good about how the procedure went, I should know hopefully in a few weeks if it has helped my pain… fingers crossed. I have been getting surgeries done since 2003. In 1991 (I was born in 1987) was my first exploratory surgery because I was having vaginal bleeding and then it started to act up again when I hit puberty. I’ve had many hemorrhaging incidences and blood transfusions over the years. But now that is all finally under control and I am having surgeries to keep up on the pain and also in hopes it won’t turn into another emergency situation.

That is pretty amazing you were able to have children. Are you thinking of getting more treatments done for your pain relief? Are you having any bleeding issues now? Where are you having your pain now? I really appreciate you reaching out to me, what we have is extremely rare and it’s very comforting after all these years to be able to talk to someone who gets it, so thank you for that. If you have any questions I will be more then happy to share any of my experiences with you in hopes that they can help you.

Tara