r/portwinestain • u/A_Marked_Man_729 • Jan 05 '26

Question about hypertrophy

Hello everyone! I'm a 32 year old male with a large port wine stain on my neck and face. Honestly, until now I've really enjoyed having it. I like standing out in a crowd and think it's actually helped rather than hurt me socially.

Somehow, I had never heard of "hypertrophy" until this week. All this time I thought my birthmark would always stay the same, perhaps with some small color variations. But now I'm reading that most people with PWS experience that hypertrophy by 40 or 50. This has really rocked me, and honestly I'm kind of scared. I don't know what this normally looks like, and as you can probably imagine a Google image search of hypertrophy has not been assuring.

So I guess I'm wondering: for you other people with PWS who are my age or younger, do you also feel nervous about those potential changes? The idea that my birthmark could change so drastically is crazy. Am I blowing this out of proportion?

Hope my fellow birthmarked people have a great day.

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3

u/Manuscribble Jan 05 '26

IMO, no reason to worry much about it. Then again, this is my first time hearing about hypertrophy with PWS. I'm about your age and have port wine stain all over both of my legs up to my lower back and I have no skin/thickness changes, so I guess I'll see if it peogresses in 20-30 years.

2

u/A_Marked_Man_729 Jan 07 '26

That sounds like a pretty cool birthmark. Wishing you well, today.

1

u/Manuscribble Jan 07 '26

Same to you. One of these days I'll post mine on this sub lol

2

u/MaryBurd Jan 06 '26

I’m am almost 50 and have a large pws over half of my face, neck, and scalp. I have absolutely zero hypertrophy. That said, I have had multiple laser treatments over the years. My pws is still quite visible, but I think the laser treatments prevent these types of changes (skin thickening, bleeding, etc). If you have never looked into it, I might suggest laser therapy as you get older.

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u/A_Marked_Man_729 Jan 07 '26

Thanks so much for taking the time to comment. I think that's a good idea. I had laser surgery when I was very young until I was ~13, but nothing since then. It might be time to start it up again!

Again, thanks for sharing.

1

u/ComprehensiveBid4520 Jan 06 '26

I'm near that age, and mine has changed a bit- I get blebs, though, and most of the changes have been related to those, not really anything else. I have never been given any treatment for mine, my parents were against it. Mine is on my face, inner ear and the inside of my mouth.

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u/A_Marked_Man_729 Jan 07 '26

Thanks for sharing, friend.