My Behcet's

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I began experiencing symptoms in December of 2012. Initially, I was sick with what I thought was the flu. A few days later, actually the day after Christmas, I woke up to five weird looking sores on my vulva. I couldn't walk or use the bathroom or even wear pants it hurt so bad. My usual gyno was out of town and so I saw a different doctor. He did a few tests to rule out herpes and when they came back negative just dismissed my case and said it was a weird strain of mono. He put me on Valtrex and sent me on my way. The sores thankfully cleared after four or so days, but I was left feeling extremely tired and weak for another week or so.

Life was going well until summer of 2014 when another sore on my vulva appeared, just a few days before I was to start my job as a camp counselor. It was so painful. I couldn't see my doctor right away since I noticed the sore on a Friday and the office was closed until Monday. I also had some canker sores at the same tkme. On Monday I went in and saw my normal gyno, and she was just as stumped as the first one. She even brought in a coworker to help diagnose me. They ultimately had to look at a book with pictures of certain diseases and told me my sore looked like a manifestation of Behcet's. She prescribed some corticosteroid topical medication and sent me on my way. Unlike the last sore, this sore didn't heal for several WEEKS. It was so painful. Finally it went away.

Since I live in Chicago, I have good access to a variety of health care options. I was able to find a doctor at Northwestern who had done lots of research on Behcet's. The waiting list to see him was ridiculous, but finally in September of 2014 I was officially diagnosed with Behcet's. Now, whenever I have a flare up of canker sores or feel a vaginal sore coming on, I take three Colcrys pills a day. I haven't had a vaginal sore since but I do get canker sores at least once a month. Sometimes the pill works magic and other times it doesn't stop the sore from clearing up. Also the pill gives me the WORSR diarrhea I've ever experienced.

I hope one day there is a cure. I hate living in fear of getting another vaginal sore.