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AVM Survivors Network

Asymptomatic Pelvic AVM


#1

During an unrelated exam it was identified that I have a pelvic AVM. I have no symptoms. The size is 3.4x2.8x2.3. I am still awaiting a follow up on recommendations from the doctor. Do I need to make any lifestyle changes immediately? I can’t find too much info out there; this site seems like the only one where real people are sharing real experiences vs. medical overviews. Thanks in advance!


#2

Hi MommaC

Welcome to the site! And well done for joining the @PelvicAndUterine group! I hope we can help you through your journey.

The main thing to avoid with an AVM is that it doesn’t discharge high pressure blood into low pressure veins at too high a pressure that it causes a bleed. Since you’ve no symptoms at all, it is difficult to tell if any actions are taking the pressure off but it’s always good to minimise your blood pressure.

Recommendations I was given by hospital were: stop smoking; avoid alcohol; quit caffeine / coffee; in other words, avoid stimulants; avoid strenuous activity, e.g. pushing weights in the gym. I had symptoms and cutting things out really helped my symptoms.

I would think that the doc will have taken your blood pressure and if it was unusually elevated, would have mentioned it. Any of the above can elevate it temporarily.

Hope that helps,

Richard


#3

Thank you for your response. I do have low blood pressure so hopefully I am in good shape. I think the recommendation will be IR treatment; not entirely sure what that is yet but will learn. I am scared of treatment just based on the stories I have been reading about how complicated the recovery can be.


#4

Hi MommaC, Obviously any kind of treatment can be worrying, But you will be fine, Stress will not help :slight_smile: , Try relax as much as possible and recovery should be plenty of rest and sleep, This will help the body repair and recover. As Richard mentioned if you minimise the risk factors avoid straining in any way then you will be fine. Take care and please let us know how things go.

Martin


#5

Thank you. I typically exercise rigorously 4-5 times per week. Is this something I should stop or is it good? This is cardio only; no weights.


#6

The key thing is to not push yourself / put your blood pressure up. So definitely work within limits for your age group but discuss with the doc as to whether any further reduction is sensible. After all, cardio heart rate maxima are designed for “normal” people.


#7

As a follow up and in case anyone else has a similar situation. It was ultimately determined that my Pelvic AVM was in fact a pseudoaneurysm of my uterine artery. While fairly large; it was not complex in terms of number of vessels involved. It has been treated with uterine artery embolism (right side) via interventional radiology. I am in awe and amazed by the technology available. So far recovering well with no pain.


#8

MommaC

Thanks for letting us know.

I agree, the technology to fix some of this is fantastic! I’m convinced my grandfather had an AVM which gave him issues from at least 1921. As a survivor of the Great War and the awful injuries and strange illnesses some people had after serving in the trenches, he was never diagnosed and there was probably no treatment available. I’m just glad that medicine has advanced so much and I’ve been able to have a catheter embolisation to sort me out.

Very best wishes for a full recovery!

Richard