Hii, 21mtf
So I am doing this post as I haven’t found any other trans woman with an avm.
Some context: I was diagnosed last december(2023) after a seizure I had in my theraphist consultory. Landed in the ER and was diagnosed with a large(6,7cm) AVM in my left oxcipital and parietal lobe. At first doctors said it was unoperable, but now with a new scan I made last week they are hopinng for embo and gamma knife.
Thing is, I’m also trans. At the start I didn’t care that much but then I discovered how estrogen is know for both it’s proconvulsant and vasodilatory effects. Later, my endo told me estrogen is a potential risk and how I had to pospone it. I was devastated, despite being sent progesterone and spironolactone, not being able to take e is like telling me I have no future or life, to the point I wouldn’t mind dying from a rupture.
But things have changed. Since the new scan, the opportunity of seeking treatment is an option. Due to my AVM size it would take several surgeries and probably years to take it dowm. Money is not a worry, as I live in a country with public healthcare. But I can only get the strenght for doing that if I can start transition and be myself. Only the amount of stress hrt would take off me would be gigantic, and helping modify my body is an enormous motivation for eating healthy and working out(exercises approved by doctors).
Now, may I ask the ladies in general out here, how has your relationship avm-estrogen be? Does anyone here takes hrt? It’s kinda different as the amount of hrt for trans people is way bigger but still some experience could help. Also, what has your doctors said about progresterone and spiro? It seems prog has anti-convulsant properties and spiro helps reduce high blood pressure and stroke risks. Maybe I could find a way of combining all that in the right amount so I can have a safe transition.
All comments welcomed :3
The hormonal situation certainly impacts decision making. Would you be able to continue taking the spironolactone at least?
Hopefully your doctors are willing and able to act as a team for joint decision making.
Sharon from ModSuppport
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I hope so. Both neuro and endo work togheter but I’m seeing my endo before my neuro which is… not that good but I’m hoping for the best
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Hi, definitely not a female - but, I’m on prescribed TRT. My e2 numbers are quite high also. I asked my neuro’s about any possible contradictions - they said none
Every case of course is quite different
I just passed the 4 year post hemorrhage & embolization to occlude the AVM/dAVF
Kind of an off topic question, what e2 numbers are you pushing into? Is it just estrogen being added or progesterone? - I just always wanted to know & never had someone to ask, and never did any research on it.
Wish you the best!
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I used to do 4mg e a day. Endo told me that’s too high and would have to see how this evolves. I actually take prog and spironolactone to lower T levels. Also spiro seems to reduce stroke risk but I have to do way more research on that.
And when comes to, even 1mg or 0.50mg would be fine at least to start and see how it goes.
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Gotcha! Do you know what your total e2 levels get to/stay at?
I’m supposed to be on some form of Ai(aromatase inhibitor), but they don’t prescribe me anything & my e2 levels stay quite high 80-90 or so
Interesting stuff, how hormones can effect AVM’s & everything else
idk what my levels are. Been on t blockers for months so idk how it affects my levels.
And when it come to T is mostly safe. E is considered a posible risk as how it excites the brain and highten the risks of stroke. But only ischemic stroke, no bleeding. At the end the risks can be controlled with balance, getting the righ element of other hormones and meds and being constantly checking and registering any change/sympton you feel I guess. Both for men and women.
And hey, you wanna hear something funny? I was talking with my neuro and I suggested that if ischemich strokes cause blood clotes, and my avm vessels are already enlarged, maybe my avm would let the clotes pass without problem. He laughed and said maybe, but better avoid doing the experiment lmao. Just a silly theory
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Lol - good one!
But, I am more worried about the high estrogen I get from the T rebound.
Estrogen surprising to most is more dangerous in most cases. Androgens aren’t that great though either.
Yeah, both have their risks. But as I said, maybe combining them with a proper amount of prog, spiro or others could help.
You could ask your docs if there is a way of balancing it, or discuss different outcomes.
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My PCP is aware, I get blood work every 6 months.
I just feel best running my estradiol way high. My total test is right about 1k and e2 at about 80-90 or so.
I feel meh running a aromatase inhibitor at any dose & I don’t want to drop my test lower.
Darn health
Wish u the best tho!
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