Has any other female on the site been told that your menstrual periods will make your AVM grow? My doctor wants me to be on depro provera (the birth control shot that takes away your period.)
I was on it for two years, but stopped recieving the injections in November because of side effects (weight gain, mood swings, etc…) I’m willing to endure it if it means there will be no growth in my Avm as long as I am recieving the injections…
Has anyone else been told this by their doctors??
It is related. Maybe not for the brainers though…
I have heard exactly the opposite (although sorta the same thing.) Many AVM’s are hormonally triggered. Mine is definitely affected by my monthly cycle and always feels more “swollen and full” during that time. Mine also had a large growth spurt at puberty. Most doctors that treat facial AVM’s (and probably other extremity AVM’s) try to treat these before kids hit puberty. That is what is happening with Maddy as she is at that age, and another young girl that I am in contact with her parents by email. There is absolutely a correlation.
BUT- what I have always been told is to avoid birth control pills and such because the hormone aspect is what causes the AVM to grow. I don’t see how having those injections is exactly the answer. But then again I don’t really know that much about them. I suppose if they reduced your natural hormonal increases each month then that would be good. I’m just not sure how that all works.
I’m in Denver again next week and I will ask the ladies about it and get a better idea of the pros/cons for you! (and for me of course…sucks not to take birth control pills!)
After reading what shalon said . Each month the day before I get A bad headache .I just thought It was because the blood flow change made the AVM act up. BUT NOT GROW!!!
I would be very concerned about this because I have had 6 doctors tell me that I could never take birth control because it increases the risk of a stroke or the avm to bleed. And also after my first avm bleed I didnt have a period for about 10 months but still had a lot of pain every single day. I would just be sure to talk to your doctors and maybe get a second opinion. If it were me I would be sooo afraid of a stroke or another avm bleed. Good Luck
Christine- OK, I really wasn’t familiar with Depro provera, but just read about it. And yes it does seem to be a good option, since it doesn’t have estrogen. It really meant for women who can’t take birth control pills (which makes me wonder why my docs haven’t suggested this to me!)
But I was thinking about this more last night. Your AVM’s didn’t really appear until late in your teens right? You didn’t experience a huge growth spurt during puberty? Cause not all AVM’s are hormonally triggered. Only some people experience the effects each month and such. So what makes your docs think yours has the hormonal component? Do you feel a difference each month? Is your doctor just being cautious?
HI CHRISTIAN,no ive never heard of that ever,only problem ivehad is that it was very heavy,my monthly cycles,doc did the endomentrial oblation,stopeed it completely,always wondered if that was why mine were terrible,let me know what ya find out!!! caroline
Hey Everyone! Thanks so much for all of the help…
Shalon-Yes my AVM didnt appear until I was 17 which was about 5 or 6 years after I started getting my menstrual periods…The doctor gave me the option of birth control pills or the shot and I opted to take the shot because the idea of not having periods sounded nice to me…
But I had no idea of the after affects that would occur…As far as I remember…My avm did seem a little more swollen during my menstrual cycle like yours shalon…I also wasn’t aware of the birth control pills having negative affects on the avm either…
I’m definitely going to take this to Dr. Mullikan when I see him on the 30th of March.,…of all the doctors that I have spoken with, he is the only one I trust!
Yes Christine,
it is always safe to talk over with your doctors all of your concerns and it also helps you feel more at ease about whatever is going on. It is a good thing you have a doctor that you can trust. I was honestly shocked when you said something about a doctor putting you on the shot. Just be careful and tell him your concerns with going on it and if your not comfortable with it just let him know. And for me I had no sign of having an avm until I was 20 years old when I had the first real bad headache and bleed. A couple neurologist suggested that my birth control (yaz could have caused it to bleed) Since I had just started taking in several months before and never had problems before that. But of course it could have just been a coincidence. So I dont mean to scare you. Just know that with any kind of birth control there is a risk of a clot or a stroke and with having a avm your risks go up. Just keep yourself informed and I’m only telling you this because I want you to be informed of my situation. I wish you so much Luck and I’m praying that the right decision is made by the doctors.
Hi Christine, I have not been told by my doctor that my AVM was changed by my periods, but I wonder. My AVM was discoverd after a stroke on 12-12-08. I’m perimenopausal and I wonder if my heavy bleeding/fibroids has anything to do with the stroke. A week before the stroke I had the worst cramps I had in my life, they equaled my labor pains, this is why I wonder.
Hey Christine, I really think the depo shot is a Dr. Mulliken and boston thing. They told me the same thing for maddy because I was a young mom and I was very concerned when they told me maddy could not take birth control when she gets older. Dr. Mulliken and another dr told me depo is ok only because of the very low hormones to be completely honest where you are a little older maybe a non hormonal iud would work better for you…hope this helps clarify
I have never been told that by aby of my doctors but I can tell you that I feel much worse during my period. I have noticed that my ankles and hands get about 3x their normal size and the “wooshing” in my head/ears is much more pronounced. Since being diagnosed I have gotten a little “nodule” or growth on my left orbital bone when I know that the pressure is especially bad in my head. During my period, that grows and gets worse. My vision usually worsens at that time as well. I have always thought there was a correlation to it. But again, my doctors say there isn’t. Sometimes I think, though, what do doctors know?
I have catamenial epilepsy too, which is a change in hormone levels and increases my risk of seizures…I am going to raise this ? with my neuroguy here in the UK, after all they don’t know everything do they, and its always best to ask and get it checked out.
I have heard a few stories of AVM’s reforming elsewhere and growing bigger, but this is a new one on me… My doc alo took me off the pill as it affected my head really bad,and awful mood swings too. This is such a rare condition, and as my neurologist says ‘he is learning more about them all the time’.
Hi there I wouldnt think so my nuero said to saty on the pill as it may help a bleed if I was on it or it could create a bleed he said its 50/50 so just go with the flow
My avm alsways gets way worse with my period. It actuyally almost lays dormant until th mniddle of my cycle when ovulation is supposed to occur. It starts then and just gets worse and worse until my cycle comes. after a few days of my period, the avm symptoms subside for a week before it starts up all over again! It gets swollen, redd, and painful. Actually, as we speak I am expecting my cycle in a week and my avm is now sore to touch! Weird, isn’t it?!
Actually with my vm I cant take any sort of birth control pills at all… It makes my vm swell, emense pain hard to breath eat speak… No way I can take it… Maybe different for you but the doctors have told me that it is our hormones counter-act with our vm which causes the swelling pain difficulty living… I know I definately cant even consider any sort of birth control regimens… take care… Sharon
Hi my avm ruptured the first day of my period… After crani and carniplasty, when my period accrues there is a pain at the site where the crani avm was… I tried talking to the docs about this correlation but they just laughed at me… My period cramps have gotten more severe after the crani and crani plasty
