Where were you diagnosed and how long did it take for you to get a diagnosis?

Hi,

I'm a member of the British Association of Sexual Health and HIV (BASHH). Recurrent vulval ulceration is something myself and my colleagues nationally see a lot of and usually when we haven't diagnosed a viral infection like Herpes Simplex after a few episodes our suspicions turn to Behcets.

Unfortunately some people can get stuck in the system; if anyone wants to comment on this BASHH does have its own health unlocked forum where you can share your experiences. I look forward to hearing your views (good or bad!). - we're on the main health unlocked list under Sexual Health.

(This is a personal blog/comment and not made formally on behalf of BASHH)

9 Replies

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  • Thanks that is interesting and I am glad to see that Behcets features on your list of possible diagnosis.

    Many of us are diagnosed with herpes before having been diagnosed with behcets. I was diagnosed with herpes over 20 years ago and so hoped that things had moved on since then.

    However, we still find the same thing happening to people on this forum. I thought herpes was a relatively easy disease to diagnose and therefore disclude.

    Have you got any info on this as it might be useful to some

    Andrea

  • Thanks for your comment Andrea, certainly the tests for Herpes Simplex Virus (which causes oral cold sores as well as genital sores) have vastly improved over the last 20 years and are now very accurate.

    That said swabs taken from fresh ulcers or blisters are far more likely to be positive in a case of Herpes than if the sores have started to dry / heal when there is a chance that the test may come back negative even if they are caused by the Herpes virus. This is why its important for an doctor or nurse experienced in genital ulcers to see them as soon as possible after they appear. The best way to do this in the UK is to attend a sexual health clinic.

    A swab taken from a fresh ulcer or blister which comes back negative should make us ask "what else could this be?" and Bechets is definitely high up that list.

    For more information as a starting point have a look at our website

    bashh.org/public

    or try the herpes association for more information.

    Sorry to plug out forum again! But we have lots of professional members to chat about all causes of genital ulcers there... have a look we really need people to tell their stories and share their experiences.

    BASHH

  • Thanks for this I am sure it will be helpful to some - especially those who haven't been diagnosed as yet.

    Don't appologise for plugging the forum as in my opinion - information is knowledge and that is a good thing.

    I will have a look in at your website etc

    Thanks again

    Andrea

  • Hi, back in June i started with Genital and oral ulcers. I went to my GP who tested me for Herpes and also sent me to the GU clinic. after having 5 tests for herpes along with all other STIs they all came back negative. i was given antibiotics but this didnt help. i have been back and forth to the GU clinic until the doctor there said they would have to refer me to see a dermatologist as it wasnt a STI. my ulcers are still present and im in agony. i was admitted to hospital 2 week ago and was given antibiotics av and still they havent cleared. When i went to see the dermatologist last monday she took 2 biopsies of the genital ulcers and started me on prednisolone.she said that they may never find out what it is which worries me as i just want a diagnosis and be treated. i went back to see the dermatologist monday and was then given Dapsone, alendronic acid and Adcel-D3. i have had loads of blood tests too. what i cant get my head round is if they cannot diagnose me then what are they actually treating me for? I was told i havent got all the symptoms for BD but i have recently found out my dds brother has the disease. I am at my wits end and not sure what to do anymore.

    Really sorry for moaning but its so difficult to express how i frustrated and anxious i am feeling

    thanks for reading

    evo74

  • This is very interesting. My GP was convinced I had Herpes when I first saw him about vulval ulcers about 20 years ago. They never cleared up with the various potions he prescribed for me. One day he intimated that I was visiting him too regularly, so I thought I must have been suffering from hypochondria and stopped going to see him about these symptoms.

    It was about twelve years later when one of my ulcers migrated to the inside of my thighs did he decide that something was wrong with me.

    Since then I have been wonderfully looked after by a team at my local hospital as I was immediately diagnosed with BD.

    If my doctor had known about the disease I would have been spared years of suffering and depression.

    It is very satisfying to know that members of your organisation might consider BD as a probability, given the symptoms being presented.

  • Is there actually a blog or question about this on your Health Unlocked page? Sorry if being dim but I can't find it if there is.

    Is the 'possible diagnosis' list on the Health unlocked page or on your website?

  • Hi Bashh

    I went to the GUM clinic when i first started getting ulcers. After 6 outbreaks and being treated for Herpes I saw one Dr who mentioned Behcets. If it were not for her getting ball rolling then I would not have got my diagnosis the following year when I had a flare up of all the symptoms. The Dr received a large box of chocolates and a thanks you card after. Without her I dont know where I would be.

    Angela

  • I would class myself as a lucky BD sufferer...Iv always had mouth ulcers and strep throat as long as I can remember, and the flu symptoms, aching body.

    As a teenager, migraines which were incredibly painfull, and are still with me to this day.. The itching skin..and red lumps over my legs face and arms..and then the ulcers downstairs!!!!

    I went to my doctor who I had a brilliant relationship with, and she sent me to the gum clinic..

    I was diagnosed there.. After being told I had herpes, which I was hysterical about.. and Im sure because of my response the physician at the time started to ask questions about my past health, and I seemed to be saying yes to all of the questions... and so I was referred to my immunology specialist..I didnt wait years I waited a matter of weeks..

    If it were not for that lady physician (at the gum clinic) it could have taken as long as some of the other unfortunate people on this site.. I thank god, that she was aware of behcets, as so many doctors and physicians are not..

    The genital ulcers seem to be the way many Behcets sufferers are diagnosed... and so the gum clinics are very important within the BD community...

    Hope this helps dawn x

  • It took me over 15 years to get diagnosed w behcets. I was misdiagnosed with wegeners and pyoderma gangranosuum. I always had horrible ulcers in mouth, throat and skin. Once it moved to my eyes, that is when I received my bd diagnosis at University of Chicago.

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