Really would like some advice if possible

Bear with me, I will get to the point after some background - please bear in mind I really struggle at doctors and get tongue tied & nervous - perhaps not getting my point across clearly and have a major fear of being labelled a hypochondriac!

About 2 years ago I was diagnosed with Ulcerative Colitis (Proctitis) - My symptoms at the beginning were urgency & bleeding and was historically proved. About the same time strong joint pain in ankles, wrists & knees followed. I also have almost permanent pain in my left eye and the size of the pupil is often smaller than the right one. Opticians found a different pressure between the two and I was referred to hospital. 3 weeks before eye appoint the doctor had me on steroids for a worsening UP flare so by the time the hospital looked at my eye it was at the time much improved. I was given the all clear and discharged with out follow up. It has since gone back to how it was ......

I also had a few of episodes of mouth ulcers and tongue sores - of which I was prescribed vitamin B strong compound.

I have a left sided abdominal pain 24/7 for 2 years that never waivers.

For the last year - I have had 6 episodes of ulcers down below which is what has led me to this site. In my head, I kind of joined some dots and thought possible bechets - went back to doctors and finally plucked up courage to mention them and hoped a light bulb might go off. Unfortunately that didn't happen and he mentioned herpes, I have a terrible doctor phobia at the best of times and instead of saying - could it be Behcets, I flushed scarlet, broke out in a sweat and mumbled something about my husband being to shy to be unfaithful (we have been together 21 yrs and faithful).

My trouble is that gastonologists at hospital and doctors at surgery tell me that because my colitis is low down the colon, I should not be having the additional symptoms I have but are unwilling to offer proper explanations. Instead my 24/7 left sided pain continuous for 2 years is IBS. My joint pain could be early onset of arthiritis, my eye pain and pupil problem could be colitis or strain, my mouth ulcers could be run down or perhaps colitis & my lower vaginal ulcers now could be herpes.

Thank you for taking the time to read this ramble and what do you guys think?

9 Replies

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  • Hi Hun, and welcome to the site !

    Yes ....... we recognise the 'is it or isn't it game' very well on here ! many people go through this saga of years of different symptoms that no one is able to connect together and so it goes on ....and on.... and on ! LOL.

    No one on here is a qualified medic hun, so no one can actually call the diagnosis for you I'm afraid. However, we can give you one heck of a lot of support while you find out what on earth is happening to you and give you some guidelines on how to go about getting that all important diagnosis that you desperately need.

    It is so important to get a proper diagnosis as soon as you can in order to start a treatment programme that will eventually make you start to feel better. The main problem with BD is that there are no specific tests that can be done to identify the disease and so it is called a syndrome because it is a series of different symptoms that are recognised as being probably BD related. The diagnosis is given when you have the required amount of different symptoms and they are registered as happening by a reliable medical person.

    We are so lucky to say that this last year we have been granted 3 exceptional sources of help by way of the specialist Behcets Centres based in London, Birmingham and Liverpool. The best way to obtain your crucial diagnosis is to get referred to one of these centres where they can keep a good eye on you and hopefully discover if you have BD or not.

    The first thing you need to do hun, is log down all your different symptoms and dates you have them and keep this as an on going record of what is happening to you medically and if you can get some photos taken as the different things happen, this will be doubly helpful for the experts to help them identify the difference between BD signs and other indicators that may relate to other similar diseases which could also be possibilities of what is making you sick.

    Once you have all this together, get your GP or one of your specialists to refer you to one of the centres where you will find you are in excellent professional hands and the best place you can possibly be if, at the end of the day, you do end up with a BD diagnosis.

    There is currently no cure for BD but the treatments that are available will help you considerably to live as normal a life if possible so the quicker you get the plan started the better off you will be.

    We do understand that it can be a long rocky road and we are all here to listen to the frustrations and problems you might have along the way. Also, we all love a good ending as well and any other nice news you have to tell the group is very much appreciated by all.

    Does this give you some idea of what to do now hun ? I really hope so and well done you for getting the nerve finally to talk to us all. We usually don't bite ! LOL.

    I look forward to hearing from you again as you progress through your journey okay ?

    Mwah ! :)

    Take care hun and good luck xx

    ps Be really kind to yourself and rest as much as you can !

  • Hi and welcome to the site!

    I would add to the great advice above that you really need to find a GP that you are comfortable to talk to and who listens carefully to what you have to say. This a very frustrating condition with symptoms coming and going and with no clear diagnostic test. So if your primary care physician isn't patient enough to really listen and follow through you are going to waste a lot of time while the disease is progressing.

    Mouth and genital ulcers are very indicative of BD. It also can present Gastro intestinal involvement. Please have a look at this link:

    hindawi.com/journals/pri/20...

    Also have a look at the BD fact sheets on this site.

    We all have similar experiences with many GPs and specialists not being able to put together all the symptoms that we have and offer an explanation and effective treatment. I have learned after many years to fight for my health, be polite but persistent, and ask for tests and referrals. It's the only way to go.

    Hope this helps. Good luck!

    Lara

  • Hi Xandii & Lara1, thank you both so much for taking the time to reply and what you have both said is really helpful and kind.

    I have just started taking photos and will now add a diary of events and symptoms to try and show more of a pattern. Next time a get the ulcers on my bits, I have been asked to come straight in to have them checked and tested - I am hoping this will show that it is not what they suggested and then I can move forward a bit. I will then go armed with info sheets I have printed from this site and hopefully might get referred for a second opinion - I live in B'ham so am ideally located for the one centre. My GP is quite approachable and he has been excellent with the UC side of things, and will sort me out with anything I need on that side to make me comfortable - liasing with the gastro team to keep them up to date etc. It's just they seem not to take the other symptoms (which I feel are often worse) as seriously.

    If I can just trouble either of you with another question, having examined both areas which are prone to the ulcers - I have no scarring what so ever are though down below still has a grazed look about it, could this instantly rule out Bechets?

  • Hi Hun,

    Basically hun, there is nothing you can find (or not find) by way of symptoms that will immediately rule out the probability of the condition.

    One good example of this is that a huge percentage of people who have BD get mouth ulcers and it is considered almost a foregone conclusion by many people when they refer to BD. However, just because someone doesn't have mouth ulcers does not rule them out of having BD.

    The fact that your particular ulcers in various places appear not to leave scars si really pretty insignificant. The fact that you are actual getting the ulcers in the first place is more of a guideline towards you having the disease than lack of scaring is against it. I cannot guarantee every ulcers I have ever had in an uncomfortable place has left a scar. ! LOL

    I am afraid the general nature of the beast is that there really are no definite markers involved here. It would make the whole thing so much easier of there were either positives or lack of them to rule it out.

    The best advice I can give you hun is to log absolutely everything even if you don't think it is related. BD is such a complex illness that the strangest of things can ring bells with a professional on the subject that we, as laymen , don't actually know about. Okay ? :)

    Good luck hun and please come back and ask as many questions as you like or even if you just need to let off steam or want some company at any time. We all go through it and no one ever feels totally alone once they start talking with us as a group or maybe even a particular member will start becoming your normal contact as the 'special friend' you find you have a lot in common with. Who knows, there are many of us here and loads you haven't met yet !!

    Keep reading and writing on here hun, it really does help get through the fog. Mwah ! :)

    Take care and keep smiling.

    Big hugs xx

  • Just a thought - you can really see how poorly understood a disease is when there is no test to diagnose it. I wonder how much longer it will take before we have that for BD.. If ever.

  • Again, thanks guys - will update as and when things move along. Really appreciate the advice

    xx

  • They told me I had herpes. I didn't; test was negative. Then they told me I had Behcets...then said MAYBE I didn't....as of yesterday I do have Behcets?! It's so confusing but don't let them condescend you. They get paid to do this so the more open and honest you are with them, the better it will be for you. As mentioned above logging your symptoms is a good idea so if you do get nervous just hand them the piece of paper. :)

    Stand your ground, don't be shy or embarrassed because you will get to the bottom of whats going on with you quicker if you stay strong !

  • Thanks Denise, I am sorry to hear that you are being left in limbo land and hope they do keep to a diagnosis for you so you can get proper help and treatment.

    It is hard to be slightly more assertive, but I have started a diary of symptoms and am cant believe I am saying this - but looking forward to the next lot of ulcers so they can get looked at!

    Keep strong xx

  • Hello Tooshyfor this!

      I have read your story, and in my opinion, I think one thing you could do that I am sure would speed up a diagnosis...even though you will feel embarrassed. .. is go to your nearest sexual health clinic as soon as your genital ulcers start to appear and be swabbed for herpes. If the test is negative, then herpes can be ruled out. I have recently been diagnosed with mucontaneous bechets disease mainly down to the re occurring genital and oral ulcers and with the other possible causes being ruled out ie: negative for herpes, crohns disease, Addisons disease and another one. ..I saw a rheumatologist who said "without any doubt it is not normal for anyone to get re-occuring oral and genital ulcers, if you get these it has to be 1 of 5 illnesses" ..I had been tested for every thing he named but not for Behcets. I took a letter from my local sexual health clinic saying how the genital ulcers had been negative for herpes and also did not respond to Aciclivor (cannot spell it....) the ulcers had actually worsed over the next 2 weeks and again were negative for herpes. I also took copies of Drs reports and blood tests ruling out the other diseases. I live in London and he referred me to a Behcets specialist who confirmed his diagnosis.

    I would like to encourage you to visit your local sexual health clinic regarding the genital ulcers as their service is free and you don't need a referal from anyone. Also, even if it does turn out to be herpes, it is worth noting that the virus can lie dormant for many many years before a person develops symptoms and the clinic can give you free medication to treat it. I was trrated for herpes for years , even though the tests were negative... seems so ridiculous now!

    I hope this may help you.

    Good luck and be brave!

    BB

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