Thanks for sharing. I'm 39. I feel the same as you. I have two on my back and a tiny dot on my thigh. I don't give a rat's behind what people think. I wear a bikini. I used to love my birthmark, thought it was special. However, it started to cause pain at age 15. not much, just some. worsened over the years, I won't go into all the detail, but the past 5 years have been horrible. I've been lasered so much (back in 1996-ish) that I have tons of scar tissue. My main BM on my back now is dark purple with light pink patches and greyish white patches. It's bumpy and ugly, but I still don't care about that. It's the pain. It scabs up and bleeds all the time. it ulcerates. right now I have an ulcer about 3" x 2" that oozes, bleeds, and is so painful I'm on percocet. I can't sit back in a chair. I can't let anything press against it or my shirt or gauze patch sticks to it then I have to rip it off and it bleeds and ... oh gosh. I can't get the ulcer to go away. Wound Care dept. of Mercy Hospital in Canton, OH doesn't know what to do. I don't really know if I was told port wine stain as a child, but have been told hemangioma as an adult. the tumor goes deeper than the skin, through the muscle, inside the bones of my spine, into the inner spinal canal and it pushes on my spinal cord. I have a disk that bulges at times, I think when the tumor is inflamed, then my back feels broken. I have a stenosis in my vertebrae in my lower back, which pinches my nerve at the hips, and has sent me to the ER. It gets bad because I have to sit and lay funny to protect my sore, tender, painful birthmark. I was in the ER the day before yesterday. I live with so much pain I don't know what to do. I see a pain management doctor who keeps me on percocet. I can't find much information about painful, ulcerating birthmarks in an ADULT. I don't care what it looks like. I'm not worried about cosmetic issues.
I'm new to this site, and have only just begun to explore the site. If you or anyone has any insight for me, please let me know. Moisture flares up my birthmark incredibly. I can't keep it moist. I tried Silvasorb recently, but could only stand it for less than 48 hours. Talk about pain. My brother as a kid used to go out into the yard and find a slug. He'd put it on the sidewalk and pour salt on it. The slug would puff up and it's skin would split and it would turn inside-out. (boys!) When my BM gets too moist, that's what I imagine the slug felt like. It's pretty bad. So ointments have been very difficult to use.
I'm sorry for airing all my issues on your post. I just feel like you are a kindred spirit, as you have this purple/red skin covering your mid-section, and you have the same mental attitude that I have as far as people looking at your or talking about you. When people at the beach (or wherever) stare or whisper, I just walk up to them with a pleaseant attitude and tell them what it is. They have questions, I have answers, and I educate them. Everyone's happy.