I started getting mouth lesions as early as I can remember, maybe I was 4 or five years old. They were bad, I just about always had at least one in my mouth. I read that some people have groups of 100 at a time. That is insane. I don't know they manage. Usually though, I had 3 or 4 really nasty ones. I grew up with them, so I just accepted them as normal. I didn't really know anything better. I thought everyone got them. Then when I was 12, I got my very first genital ulcer. What a treat that was. Being only 12, I was scared to tell my parents. I was afraid they'd think I was having sex or something and had gotten an STD. Of course I wasn't and I went to my Primary Care Physician and she practically accused me of having sex. Then when I started crying, she asked me who had sexually abused me. I wasn't being abused either. I felt like no one would ever believe me that I had absolutely no idea what had caused it. Meanwhile I was in excruciating pain, and could barely walk like a normal human being. Finally after seeing a gynecologist who really listened to me, I was referred to a Rheumatologist (spelling?) After one visit and explaining my symptoms he suspected I had Behcet's. He put me on Colchicine and decided that if that took away the lesions, then Behcet's is what I had. It worked and I was diagnosed.
I began having pain in my eyes and luckily my mom had done research on Behcet's and knew it could be related. I went to the eye doctor and he diagnosed me with episcleritis (spelling??). My eye was just stinging like crazy and was red. He gave me some sort of medicine and it went away but has came back about 3 more times up until I was about 15. Now I am 20, and still taking colchicine, which is a miracle. However, over the past few months the mouth sores have been increasing, regardless of the colchicine, which I take religiously. Other than that, I barely have any symptoms at all, and I am very thankful. I hope that it never gets worse, although I know I am still young and there is plently of opportunity for something to go wrong.
I read all the stories and it really scares me knowing what can happen as a result of Behcet's. I am thankful to you and all the others who posted stories because it has helped inform me. At least I know I have it and should any problems arise I will be able to tell my doctors right away that I have Behcet's, which will hopefully prevent any major problems, like blindness.
I am currently a third year student in college in Rochester, New York and I am studying for a degree in Graphic Design, which I have decided is my passion. I absolutely love it. Therefore my eyesight is very important to me, without it, I would not be able to design anything. I am currently learning HTML.