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Behçet's UK
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Just discovered I may have bechets.feeling very confused

Hi I've just been told a few days ago that the rheumi I saw thinks I have bechets and on reflection it fits all my symptoms.ive had more illnesses than I could care to mention but the main ones would be swollen,painful joints,large mouth sores,fatigue,dizzyness and what I thought was herpes.i was told by the gu clinic 9 years ago that it looked like herpes but they never confirmed this.i took not hearing from them as a good thing as they only contact you if you have it.the sores came back at least a few times a year and Drs said it looked like herpes and treated it as such.one Dr though had a real good look and thought they didn't look like herpes sores.i thought nothing of it.i also had knee pain when I had the first sores.since them I've had countless complications and illness which was put down to fibro and Ehlers danlos.i went to Drs so many times that eventually they sent me to a specialist in London who deals with eds.she says she has seen bechets a few times before and is feeling certain that's what it is.how long do the bloods take to come back and will they see me faster now?i'm scared and confused by it all and I feel like I don't want to have tell people that I have a disease which if you google it it comes up as genital sores.i don't want people to think that is all the disease is because to me it's so much more.

7 Replies


It definitely is so much more! I really feel for you its s horrible disease and no one in normal everyday life has heard of it which makes it really hard to talk to people about. I was diagnosed 6 months ago and am still waiting for my 2nd appointment. In the meantime I have genital sores every 2 weeks. Hopefully you'll be seen much quicker tho. I had the blood test and it came back pretty quickly. I have dizziness too and didn't know it was a symptom! Apparently the Centres of Excellence are supposed to be really good here in the UK, hopefully you'll get referred there. This website is really good, I only found it a few days ago and have learned loads since. People are really nice on here because everyone is the same, just different symptoms. Try to stay positive that's what I'm trying to do. Take care xx


Thanks for the reply.i still don't believe it's possible really and they'll tell me it's something else but a part of me thinks that the diagnosis fits to quite a lot of symptoms.although it would be nice to know I've actually not got herpes!

I've read stuff in the Internet which I wish I hadn't and I'm bricking it.thanks again for. The help x


That's exactly how I feel. I keep thinking they must have got it wrong I can't have this! It's better to know and be treated though. Take care x


I also had a very hard time accepting my diagnosis. I felt broken, weak and decrepit. I felt betrayed by my body for attacking healthy tissue. It has now been 2.5 years since my diagnosis and I am doing well. I have accepted it and just explain to people that "I have an auto immune disease that leads to meningitis, arthritis, and ulcers everywhere." that seems to sum it up well enough. I too was told I had herpes for years even though it did not look like them either. they ended up cutting one out for analysis and they said that there was no bacterial or viral properties and so that was that. you will get better with this. it takes time. I currently have a huge ulcer under my tongue. I think nothing of it. a few years back I would have thought that this is the beginning of another huge horrible flare. mouth ulcers happen. keep resting and take it easy. don't over do it and feel better soon.


Please do not be frightened. I've had bad times and great times over 17 years. Take each day as it comes. Stay positive and be patient. Symptoms come and go and just when you think you've got a handle on it......boom. Things change again. We become very adaptable people. Don't worry about what people think because they usually know very little and I've found they are very sympathetic about the ulcers and not at all judgemental. Hugs to you both.

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Thank you to everyone.having a really rough day today.more bizarre symptoms coming out of the wood work and feeling like its getting on top of me.you always think it happens to other people,don't you.ive got four beautiful kids but right now doing basic things for them is hard work.i wish they would hurry up and tell me what's happening so I can start living again without holding my breath.


I understand how you feel. I was terribly shocked by my diagnosis. It takes some time to come to terms with, and you don't need to be dealing with other people's reactions as well.

I don't talk about my lesions to anybody but doctors. I haven't told anyone my exact diagnosis except one friend. I gave work a doctor's note that says I've got an autoimmune disorder that makes me tired and sore. They don't need the name of it.

You don't have to tell anyone anything unless there's a reason they need to know, and even then you can usually avoid going into details. Let's face it, most people probably don't want to know anyway. And if you need to talk about it, you can come to us. We'll understand better than anybody else will.


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