My name is Emily, I’m 19 years old and I’m from the UK. I have just signed up to health unlocked and joined this society. Long story short, 3 years ago I had surgery to remove an extremely abnormal ulcer near my cervix. I also experienced leg sores, always suffered with mouth ulcers, coughing up blood, aching, fatigued and more, so was referred to the Bechets centre at Birmingham. I was really unhappy with how I was treated and felt as if I was a nuisance and over exaggerating. They didn’t think I had bechets as I fulfilled ALL the criteria APART from suffering with my eyes.
Fast forward three years (now) I am still embarrassingly suffering with recurrent genital and oral ulcers and swelling (the sores really knock my confidence), leg sores, fatigue, coughing up of blood, joint pain, eye and headaches, numbness and more. I also experience tics. I have recently had a gastroscopy and colonoscopy, all clear. I am now waiting to see a rheumatologist to hopefully give me a diagnosis.
*JUST REMEMBERED* I feel my symptoms can get worse when hormonal. My inflammation markers have always been high on blood tests. My mum has many rare health conditions, most being auto immune.
I am really sick and upset of being told to go to the gum clinic just because of my age, being told it’s all in my head, so stereotypical and hurtful. I have been suffering all this time because the bechets centre think it’s not bechets just because I don’t tick ONE box of their criteria, but every other professional whom can’t diagnose me does think it is. Hoping I get some answers from the rheumatologist soon. I have had to pay thousands of pounds for private care☹️.
P.s has anybody had any dealings with the Liverpool UK bechets centre? As I am going to ask for a referral.
I would appreciate anyone getting back to me,
Thanks, Emily.
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Hi there. I don't live in the UK but wanted to give you just a shout put of support. Thinking of you; the struggle for a diagnosis. How hard it is to feel so crappy and not feel supported by the medical professionals who you need to render the diagnosis so you can start your treatments. Hopefully some of the folks on here can give you some tips how to manuveur the system in your region. From there the rest of us can keep providing moral support and feedback on healing. Take care.
Hello! Aw thank you for getting back to me, that’s ever so kind. In a negative situation I’m glad we can empathise. I am here to morally support you too, and you look after yourself also. Thank you again!!
I am so sorry to hear your story, it is far too much for anyone to have to go through, especially at your age.
I just wanted to tell you that you’re not the only one who’s had a negative experience at the Birmingham CofE. Although, for some time now, they have acknowledged that I do indeed have Behçets and have overseen my treatment plan locally, I have at one stage come away from the centre feeling dismissed, hurried, having taken up their precious time and altogether worse than when I arrived. I have since put it down to the Rheumatologist who was on duty that day... it seems it can be rather pot luck if the regular guy is not there.
I’ve heard great things about the London Centre, but can’t help with Liverpool.
I do wish you all the very best of luck with your journey going forwards.
Hi there!! I live in the USA so I’m not sure how things work in your health system. I’m sorry
You are going through this it will get better.
I want you to know I was 18 when i started with health issues. I was told it was shingles, and each rash outbreak told shingles but then it can’t be shingles that many times! 🙄 it wasn’t until this year at age 46 that I started having vision issues and finally found a doctor that mentioned Behcet’s. But when I saw the Rheumatologist she said since I didn’t have documentation of ulcers in my private area that she would not diagnose me now. Mind you I’ve have everything else.
Skin Rash ,mouth ulcers, vasculitis, hair follicitis , uveitis in my eye (left eye) which caused 20% less blood flow and I’m light sensitive and now wear sunglasses indoors all the time.
I’ve seen several specialists that were condescending, treated me like I was Bat shit crazy and a drug seeker.
I have yet to take a pain pill, I’ve been on neuropathy meds (trileptal& lyrica) for the cranial nerves / trigeminal nerves pain.
My out breaks have been about every 2-4 years apart and when it hits it lasts for months to a year.
My cranial nerves were affected in this last outbreak and I have gastrointestinal issues that have yet to be determined. I find out in 10 days.
What I have learned is you need to document everything and save it! Take pictures and save them. I’ve put together a binder and have a spot for each doctor and my chart notes and test results. ( little over the top maybe but I was tired of the bull crap) this way i can prove what other doctors have said.
What I was told is it’s not uncommon for this disease to take years 10-15 to get diagnosed as the symptoms mimics other autoimmune diseases.
I have been also taking my mom or a family member with me to all of my appointments this usually makes the doctors be more behaved but if not you have another person that can verify how you were treated!
For me I was lucky for the Retina specialist she mentioned Bechet’s , my primary care the sent me to a neurologist (migraines & cranial) & gastro Dr that have all believed in me and have not stopped looking for where I say I have pain.
I have also gone, gluten, dairy and sugar free.
Good luck and keep chatting with people on here, I’ve met some great people who I am thankful and have helped me.
It’s nice to know you’re not suffering alone.
I heard what HOPE STANDS FOR (it’s perfect reminder)
Hello there!! Thank you so much for getting back to me and your kind words.
Goodness, I’m really sorry that you have suffered all this time without a diagnosis, and have had to experience vision issues for anything to highlight to professionals😢.
That is really uncalled for, I’m sorry again that you were made to feel that way from professionals. Did they diagnose you from your symptoms or did you have special blood tests too?
I hope that the results from your gastro issues are positive, and if not, you WILL get through it and receive the needed treatment to help you best.
That is a great idea, thank you. It’s definitely not over the top!! Great minds think alike... I have done the same, I have printed all of my symptomatic pictures onto one word document.
I see.. wow that is a long time (not in comparison to you of course)!! As bechets was ruled out from the Birmingham centre, the professionals who actually listened to me thought I may have something called genital Crohns so I had endoscopy both ends, pelvic scan and ct scans. All were clear which is wonderful news and the thought of Crohns is now eliminated.
That’s another brilliant idea, I always take my mum with me to appointments, bless her she is so supportive and wants answers for me like me!
Aww HOPE🕊.. what a lovely saying!!
You take care also, best wishes and thank you, Emily.
My sister has had Crohn’s and it went into remission so that is what they will look at for me as well, but what my gastro Dr has said is they are very similar once they get in the intestines. Since Behcet’s has no true test but it’s a point type system on symptoms you’ve had. The odd thing for me is my blood work shows I am normal. I had a pelvis & abdomen MRI/MRA with contrast that showed something so then had to do another test MR Enterography
It was at this scan that I drank contrast and the had a dye contrast that showed issues.
Now I’ll see what the gastro Dr says 4-23.
When I had my last outbreak it started as a rash above my left eyebrow and a terrible headache and jabbing stabbing pain at base of my neck. I was unable to lay flat or on my left side of my head until 2 weeks ago when the neurologist started me on Trileptal. I couldn’t wash, dry, comb my hair without being in pain. Couldn’t wash rub my face without pain. The trileptal I had to slowly titrate up to the dose which is now 300mg twice a day. Pain not totally gone but tolerable.
Hello again! Aww right I see. I hope your sister is feeling better and I really hope that you go on alright, I am and will be thinking of you👍🏻. Let me know how you get on (if you want to!!)
Aww that sounds awful that you were suffering so much with pain and still are now☹️ I’m glad that the Trileptal has made your pain a bit more bearable.
I shall keep you updated and vice versa, take care and be in touch lovely!!
Hi Emily - you are correct - there is a link to hormones - if you look at my posts over the last few years I have detailed my symptoms. I am sorry you have had this experience with Birmingham. If I may suggest - try to see my consultant - Mr Patel at the Derby Royal - he and the rheumatologist prescribed Azathioprine and it has worked. You are going to have to be polite but firm. I wish I had been - didn't want to admit to myself that I had Behcets - maybe if I had found this group before things may have been different. My eldest daughter is called Emily - you sound like a lovely young lady just like she - and similar age too. Please keep posting as you find this group a great support. x
I shall have a look at your posts now😃. Brilliant, I’ll remember your consultants name! I have a appt in a couple of weeks at the Nuffield Derby with I think his name is Dr Raj, have you ever seen him? If you don’t mind me asking, what symptoms has the azathioprine helped you with? It’s the painful genital ulcers which are affecting me the most. It makes me feel abnormal but once I get diagnosed I’ll accept that it’s an illness and I can’t help it. Im really happy that you have received support from this group.
Aww thank you!! Emily, you have good taste in names haha!😉
Yes I think I have seen Dr Raj - rheumatology? Ask to see Mr Patel - ophthalmology - he is the man! I saw him at the Nuffield a couple of months ago. Regarding ulcers - cut out ANYTHING anti-inflammatory - food, meds the lot. Even creams. That stopped my genital ulcers. The Azathioprine has got rid of all eye inflammation. I don't get the migraines now - hope you don't mind me mentioning but you will have to be wary of any thing that changes hormones such as the pill. It is nice to know of someone else shares consultants etc, you do feel so isolated with Behcets. You are so young Emily - I only got a diagnosis two years ago. I have suffered since I was 25 - I am 51 now. Things have progressed so much it shouldn't be such a problem to get diagnosis and treatment. However if you are seeing people in Derby then I can only say the treatment I have received has been world class Take care and keep posting - I would love to know how you get on x
Aww brill. Yes Dr Raj is rheumatology! Okay brilliant I will do, thank you!!
Thank you for your help, I wouldn’t know what foods to stop eating! What foods are you avoiding? And creams? Wow anything to stop the ulcers is worth a try.
Aww I don’t mind you mentioning at all, thank you so much for looking out for me! I am on the pill but will probably have to come off it, I’ll see what the doctor recommends.
It really is, and we can recommend professionals to each other! Are you local to Derbyshire or do you travel to the Nuffield?
I’m sorry you’ve had to suffer for so long, it’s so unfair. Definitely, that’s how we have got to look at it- treatments have never been so good!!!
Thank you again, you take care also and I shall keep you updated!! X
I am very local to Derby - brilliant hospital. Creams - I used arnica cream once - a natural anti-inflammatory - never again! Biggest ulcer down below ever. Awful. No asprin or ibuprofen. Toothpaste - there is an ingredient you have to be careful of - but I can't remember the name. However the Azathioprine has stopped much of the ulcers if honest. Food containing salicylates - you will have to google it. Anything tomato - sauces etc can you believe. I haven't been obsessive about this, I think I have a tolerance and once in a while doesn't hurt but the biggest offender by far is drink - wine in particular and cider....its the sugar. I have also found I am lactose intolerant, which my Emily has been since a little girl. No idea where that sprung from, but again that is to do with the sugar in milk. Until I discovered the salicylate link I suffered terrible with restless legs - the day I looked at my diet - cut the alcohol, not that I ever drunk a lot, I have had no problem. I think diet is a key part. Going back to your symptoms, ask your GP to refer you to Mr Patel at Derby Royal regarding your eye inflammation, and as a possible Behcets case. There is nothing to lose and everything to gain, even if they keep you under observation. They will dilate your pupils and will be able to see if there is inflammation at the back of your eye. Its not painful. Keep in touch, I don't wish to sound like a medical journal but I have felt very alone with this. Not that I would wish to have any other illness but no-one has heard of Behcets. If sharing information I have found helps someone else I am happy. x
I am a little confused by your experience at Birmingham as eye involvement is not always a factor in Behcet's. I was diagnosed at Birmingham and my eyes aren't affected. Do you still have the letter they wrote after the appointment?
The fact that you are still experiencing mouth and genital ulcers and other skin problems three years later is ample argument for another screening for Behcet's I would think. You can be referred by a GP or even a dentist, it doesn't have to be a rheumatologist. I hear that Liverpool is very good.
I recommend that you keep a diary of your symptoms with nice clear photos. I always felt anxious about being suspected of exaggerating. Doctors disbelieved me for so long I came to expect it. But when I started letting a folder full of pictures do the talking, things started really moving.
Let us know how it goes and meanwhile there is a lot of help here in managing your illness while you are waiting to be diagnosed.
Hello J! Thank you for replying to me and being so kind!
I agree, my point exactly!! They made out as if I was a hypochondriac and made me feel so small. Yes I do have the letter I am saving everything and popping it into a file!
Aww I see, I didn’t know that! Thank you. I thought the professional had to be a rheumatologist. But I am seeing one next week so hopefully will get some answers then.
Thank you for that idea, it’s a good one!! I will continue to save pictures for proof. I’m sorry you felt that way and had to save pictures to be listened to, I guess it’s because it’s such a rare illness but🤷♀️
Do you think it sounds like Bechets? I’ve almost accepted that it is and so many doctors (that have referred me to the rheumatologist) think it is and I can’t think of what else it could be.
Hi Emily. It's really hard to say whether it sounds like Behcet's as it manifests in different ways in different people, and there are other illnesses such as lupus that can show similar symptoms. It really is a diagnosis that needs to be teased out by a bunch of experts, which is why we have the CoEs. The most talked about symptoms in the Behcet's forums are oral and genital ulcers, joint pain, skin eruptions, headaches, gastrointestinal problems, fatigue and uveitis, but not all of us have all of these. The only one that is common to all is the mouth ulcers but even these vary a lot in size and frequency from person to person.
It is good that you are going to see a rheumatologist, as at this stage it is important that you are seeing someone who can carry on working with you if it turns out not to be Behcets.
It is truly horrible having a debilitating illness and not knowing the cause. At your age, you really need to know so you can get the right treatment so you can enjoy your youth.
I was diagnosed in Bath mineral clinic just over 2 years ago and I do not have all the symptoms, and compared to some of the stories I have read mine is really mild version of the disease.
Hopefully you can get your diagnosis and can be giving some treatment that works for you. Keep seeking that referral, and never stop fighting. Doctors have a really tough time and see a lot of people on a daily basis, and I would say a lot of them probably do not need to see a doctor, I think they tend to take a dismissive approach unless you keep going back.
Now on the meds (Methatrexate, 8 tablets once a week) and most of my symptoms, except the ulcers, have just gone.
I wish you best of luck on your journey and hope you get the results you so desperately need!
I currently have about 12 ulcers in my mouth, but have had a really stressful time in the last couple of months, so I am blaming that. But all other symptoms almost completely gone. Very rarely do I get the red boil like lumps (erythema nodosum) and only ever had 2 instances of genital ulcers, but the fatigue is better, the aches are better. but from what I understand I am on nearly the maximum dosage of Methatrexate.
Just demand to be taken seriously, I do not think that people that do not get these horrible canker sores can really understand how debilitating they can be, aside from all the other symptoms these are the ones I wish had completely gone.
Keeps us informed of your progress and I wish you all the best in getting a diagnosis, as that at least allows you try and treat it.
I'm so sorry you are suffering like this and I can completely empathise with your situation. I have been trying to get a definite diagnosis for the past 4 years. I have mouth ulcers which have been confirmed as fitting the criteria of behcets disease but although I have problems with my skin, joints, eyes, and genitals I am told they do not present in the classical manifestations of behcets symptoms. I have been told my skin problems are urticaria and hydradenitis and my joint muscle and nerve pain is fibromyalgia although the classic medications used to treat these conditions do nothing for my symptoms. I am under Liverpool c of e but the consultant there, professor moots treats me like I am a hypochondriac. I told him the list of symptoms I have and because I mentioned memory fog which is a term my GP referred to for what I was suffering he said "where did you get that term.. it's very text book". He said it is unlikely I have behcets but has given me a follow up appointment. I also see professor Morgan in Leeds chapel allerton who isn't quite so dismissive but also tried to say my symptoms are down to other reasons. My GP is very supportive however and thinks I definitely have behcets. I am currently taking cyclosporin and colchicine along with hydroxyzine and fexofenadine. I was on gabapentin but have recently started having blood pressure and heart problems so don't take them at the moment...not that they worked anyway. I'd give Leeds a go if I were you if you can get there. Like the c of e's they have a group of consultants there, rheumatologists, dermatologists, opthalmologists who will all see you and they won't dismiss you straight away. I've been going there for 3 years and at least they'll try different medications to see if they'll help your symptoms. Good luck and keep us posted x
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Take care and keep posting - I would love to know how you get on x
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