Behcet's Syndrome Society
4,019 members3,400 posts

A waiting game

Hi all,I've been under the hospital for 5months as I had really bad mouth and genital ulcers which were so bad I was hospitalised for 4days. I was referred to a dermatologist straight away (after having several swabs taken for herpes etc). She did 2 biopsies on the ulcers down below and gave me prednisalone and dapsone along with lidocaine. This was in sept. all was well and they cleared up until 2weeks ago when I thought "oh no not again". I received a letter from my consultant about my biopsy results and was mortified when I read it. Basically she said they shown severe ulcerations (think I worked that out as its me that's in pain with them) then it went on to read the cause was not obvious and it makes her wonder if it is a condition called idiopathic orogenital aphthae. I did no more than google this condition and it goes on about bd and how it could take several years to diagnose?. I've been to see my consultant today and she highered my dosage off dapsone and I go back on 21nov. She wasn't even bothered about looking how bad my ulcers are at the moment. Feel like getting a second opinion to be honest. Thanks for reading

3 Replies

If you read the information on the Society's website you will get a reasonable idea about whether you have Behcet's. I'm not advocating self diagnosis as many conditions have similar symptoms but we BD-ers often find that it helps to be pro-active regarding who we see.

It's true that BD can take a long time to diagnose, but times are changing and we now have three specialist centres operating in the UK. You could take some information from the Society to your GP or Consultant and ask for a referral to one of the Centres, or ask the Society for a list of recommended Specialists in your area.


Hello evo74

Dapsone is a drug used in the treatment of leprosy special. Oral aphthous ulcers, genital ulcers pseudofoliculitis, Erythema nodosum and pathergy test in diagnosis of symptoms, oral aphthous ulcers, genital ulcers, and at least one of the symptoms of the skin is sufficient for diagnosis. The most important factor in disease tetikliyen keep morale high mental collapse.


Bless you hun, it took about 4 years for me to get diagnosed. I went round the houses in different departments at the hospital. It took my G.P to refer me to a Rhumatologist who specialised in BD to get diagnosed and on treatment. Thankfully my G.P is fantastic and if it were not for her sticking to her gut instinct I probably would still be without a diagnosis and treatment.

Fingers crossed for you x x


You may also like...