AV, ovarian cysts and use of hormone therapy? - Vascular Birthmarks Foundation Forum
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Old 10-20-2011, 03:53 AM
Jude Susie Jude Susie is offline
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Join Date: Mar 2010
Posts: 5
Default AV, ovarian cysts and use of hormone therapy?

I am 37 year old female with AV in right upper chest and hemangioma on left cheek. AV was successfully treated in 2002 with schlerotherapy, removing about 75% of it. Now I face a new issue. In 2008 I had an 8cm ovarian cyst that ruptured and required emergency removal of my right ovary. 3 years later, I have another 8cm "complex" cyst on left ovary which may require removal and possible removal of this ovary, forcing me into early menopause. Fortunately, I have 3 beautiful healthy children and feel done with child bearing. For 20 years I have been advised to stay away from oral contraception because of the AV and risk of stroke, blood clots etc. Now I am told I may need hormone therapy as a result of this surgery and/or possible early menopause... Is it still a risk to take hormones/the pill with an AVM? Or has that opinion changed In the last 10 years? Also, is there any chance these ovarian cysts are connected to the AV or hemangioma?
Susan, Annapolis, MD
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Old 10-20-2011, 04:29 AM
Jude Susie Jude Susie is offline
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Join Date: Mar 2010
Posts: 5

Postscript, my Youngest daughter (9mos) has 2 hemangiomas ...on her head and back, as well as a large PVS on her leg. I know they say these are not hereditary...but it does make one wonder. Can anyone recommend a specialist in the Annapolis/Baltimore MD area for both her and for my issue mentioned previously. I was always seen at Boston Childrens hospital where I lived nearby. We are now close to John Hopkins... Thanks!
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Old 10-20-2011, 01:31 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Hi there!

One of our experts, Dr. Comi, is in Baltimore. She is our SWS expert, so she deals with port wine stain birthmarks rather than AV's. But you might get in touch through http://birthmark.org/experts.php and see if she could recommend someone in the area. She's very nice, very smart, and answers pretty promptly, so I don't think she would mind if you asked an off-topic question.

As far as The Pill or HRT and av's or avm's go, most of what I have heard is anecdotal. If you ask around, you will probably find that most people did not have a good experience taking these medications. However, the people who didn't have any trouble probably aren't here posting about it.

Last week I read an article, while I was getting a haircut so I don't remember which magazine, about managing menopause symptoms without drugs. So, I think I would ask the prescribing doctor what the goal is. Is the goal to relieve discomfort of the symptoms or is there another need? Then you might have to weigh the risks against your symptoms.

Let us know what you find out!

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Old 06-24-2012, 12:52 PM
dancermom dancermom is offline
Join Date: Jun 2012
Posts: 44
Default About hormones

Susie, AVMs have progesterone-receptors, which makes them respond to hormones. But, if your AVM didn't act up dramatically during your three pregnancies, I do not think that hormone replacement therapy would kick it into high gear. Also, it is different taking hormones when you are not producing your own naturally than it is to take additional hormones when you are already producing them.

About your daughter, I think you should look into the possibility that there may be HHT in the family (http://hht.org/), which is hereditary and can predispose people to multiple AVMs.

Incidentally, after doing much research, I no longer believe that AVMs in general are not hereditary. If only 20% of AVMs ever become symptomatic, and they were not diagnosable in the pre-MRI era, then it would be easy to miss a genetic connection, wouldn't it? Especially if it takes a group of genes rather than a single gene, so that only certain family members carry the right genetic combination to predispose them to AVMs.
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