Being referred but terrified to be ignored and dismissed again. I know something's wrong with me. Any hints and tips?

Hi everyone! I'm really new to all of this so if I get it wrong, it's totally fine.

I'm currently being referred to Birmingham COE after being very sick for 3 years. I'm 17 now and am suffering severely. I've had mouth and genital ulcers since I was a child, and I've always had severe diarrhoea. However in the last 3 years it's gotten worse. I've lost 10 stone, both because of nausea and pain in my stomach, ive also had blistery sort of ulcers on my Legs and arms.. I've also had terrible joint pain to the point of my hands curling up and not being able to use them. Ive also lost two inches in height. I also get debilitating headaches. Since December last year, my eye sight has been getting worse, and now I'm partially blind and have been told I have 3 weeks left until I'm entirely blind. My doctors thought I had crohns, endometriosis, IBS.. They've passed me around everywhere and had given up on me... Until I met an entire stranger who mentioned behcets. My doctor thinks it fits and is very excited.. But I'm terrified I'm going to see the specialists at the Birmingham center and I'll be dismissed again and told its all in my head. I really just want to get diagnosed so I can have a name to the monster. Any tips or hints? I would be terribly grateful for any answers x thanks everyone xx

9 Replies

  • Welcome to the forum, you have come to the right place for help and support, even though i'm not a sufferer i am a carer to my daughter who started severe symptoms at 17 she is now 25 and under the care of the COE in St Bart's London, she is getting very good help and support there so i cant see your one being any different. Good luck through everything and keep in touch with us all. x x

  • You dont know what it means to me to read that. Its been the most difficult thing in the world to deal with.. with all doctors giving up. Its incredible that i have finally found a light at the end of the tunnel. I just want to live again. Thank you again.. I had little cry at your reply. Love always xxx

  • Hi,

    Firstly welcome to the forum.

    Like so many of us who have now been diagnosed with BD, we went round the houses seeing different consultants with all of them drawing a blank after Crohn's, IBS and other simular illnesses have been ruled out.

    I was diagnosed last year and it was my G.P who thought BD was the culprit for all my problems and reffered me to the Rhumatology dept in my local hospital.

    In the last year I have had numerous flares and ended up being admitted into hospital the last time.

    Colchicine, steroid injections and Azathioprine have been successful in bringing my BD under control, all be it with little blips along the way.

    My doseage of Azathioprine has just been upped from 50mg twice daily to 75mg twice daily and fingers crossed it will do the trick.

    Tips for you to go prepared to birmingham.............

    1. Keep a diary of symptoms.

    2. I know it sound gross but take photographs of ulcers.

    3. Try and take someone with you for support.

    4. Write down any questions you might have.

    Hope this helps and you start to feel better soon.

    C x

  • Thank you so much! Im sooo glad you are getting the treatment you need. Its fantastic to now im not alone. Just hoping for a diagnosis soon. Feeling rather hopeless.. God will provide!:)

    Thank you so much xxx

  • Welcome to the forum. Please don't be worried about going to the centre in B'ham. they are fantastic. You will find that they won't think it is all in your mind, they will be very thorough with you. We have all been through similar things to you, and a lot of the time we have been fobbed of and told we are imagining things or are just hypochondriacs. We are not and the drs at B'ham know this. They will listen to all you have to say.

    As said before, keep a diary, every little thing needs to be noted, even if you don't think they are related. It is sometimes something random that can be related. The drs need to know everything, and take someone with you. It can be daunting seeing a new dr and sometimes we forget to ask something until we have left. It may be that the other person picks up on something that has been said that you have missed.

    You haven't said when your appointment is. With your eye problem you need to be seen quickly. I don't know if they could bring your appointment any closer, but it may be worth calling Debbie, the Behcets nurse to see if they can do this. Please let us know how you get on if you do call.

    Like all of us on this forum I do understand and if you would like some support when you go to the centre, Private message me and I will gladly meet you there.

    I have had Behcets for over 30yrs so am quite an old hand at it. I don't know everything, obviously, as I am not a doctor, but will willingly help in any way I can.

    Take care and stay strong.


  • I seem to be crying at everyone's responses!!! You are all do lovely!!! :) I'll take everything you say into consideration! Am going to start a diary today.. I'm just terrified I'm going to walk away without any treatment. Thank you for your support. It's invaluable x hoping you are staying strong and well x

  • You certainly will be in good hands at the Birmingham Centre of Excellence!!. In fact, you are in good hands in all of them! Each centre is staffed with professionals and specialists in the field, and you should never leave feeling "dismissed or as if it's all in your head." I would suggest, as a helpful hint, to bring along a diary of symptoms, dates, photos and anything else you feel relevant to your condition. It can help the clinicians with a diagnosis and it can help you feel more confident when meeting with them. I know it always helps me to have things written down when I visit my GP. As soon as I step in to the office, it all goes out of my head!

    Best wishes!


  • Thank you for this!!!:) I'll make sure you get organised!:)

    All my care and support x

    God bless x

  • To get things into perspective a bit - bear in mind that if you DO come away from the Centre with no treatment, it isn't because you don't need it or because no-one believes you.

    If you DO come away without a diagnosis, that won't mean you are being dismissed or that you don't have BD.

    It may take time or require a few tests or further appointments to get a firm diagnosis. If they don't think you have BD then they will do their best to help you and recommend or refer you to someone who they think can help you.

    They are called Centres of Excellence and that is what they are. They will believe you, they will do their best for you, but you may not get all the answers you seek from one appointment. Please try not to get worked up about it. All the advice above will help you to manage between now and then and at the appointment.

    Chronic long term illness can affect you mentally, but at these Centres they understand that and have staff to help with it - it's NOT the same as being told it's all in your head.

    So do please approach this appointment with an open mind, try and put the way you have been treated in the past behind you and move forward with the right people looking after you and endless support right here.

You may also like...