Waiting for diagnosis...

[Bocksey]

Hello everyone. After a year of being treated for genital herpes (even though 4 swabs have come up negative), I am finally being referred. The GUM clinic referred me as 'urgent'. That was 2 weeks ago... How long do you think it will take? I am desperate for some treatment that might work!

[ColdNoodleSoup]

Ugh been there with 4 negative swabs and two negative blood tests and huge doses of antivirals. I wish you the best of luck. I can attest that the antivirals did nothing for me and colchicine has been a life saver. Hang in there!

[Suzy170]

Can I ask what your symptoms were and why they thought it was genital herpes? I'm currently being treated for it but my doctor believes it could be behcets. Many thanks

[Bocksey in reply to Suzy170]

Just sores on my genitals. That's all they went off to start with and that the sores were appearing in different places. Then a positive blood test for oral herpes (type 1). But a high percentage of the population have that, many without knowing.... I hope we can both get the right diagnosis eventually so we can get the right treatment!

[Suzy170 in reply to Bocksey]

That's exactly the same as myself sores in different places, me too I really hope we do thank you and All the best

[ColdNoodleSoup in reply to Suzy170]

Hi guys,

I'm so sorry you're going through this. Here is some info about why my docs suspected Behcet's over herpes for me...

(Also just FYI herpes Simplex Virus (HSV) type 1 can actually be present in oral or genital regions - it just prefers oral, meaning it is milder genital herpes than HSV2. )

The reasons the docs suspected Behcet's over HSV for me was because of the following:

- Multiple tests - four swabs and 2 blood tests - were negative for HSV 1 and 2

- Daily doses of 1000mg Valtrex (antivirals) did not stop flares

- Flares were severe (over 2mm diameter lesions) with fever, fatigue and malaise. For herpes, this is only generally common during the primary infection, not for multiple flares as it was for me

- I had about 9 or 10 flares (of varying severity - about 3 or 4 were very severe) in about 4 months, which is higher than the average 4-6/year during year of initial infection

- Genital lesions were ulcers, or holes, full of pus (see another poster who recently put up some photos) and not clusters of scabbing blisters

- BIGGEST CLUE - I had oral and genital lesions simultaneously. i.e. would get a bout of canker sores followed by genital lesions. for herpesI was told that it is impossible to get flares in both locations because the antibodies your body creates to fight the infection in one location prevents it from occurring in the other

- Turkish heritage

I really hope you guys get to the bottom of this. Eventually I was sent to a an infectious disease specialist and finally a rheumatologist, and put on colchicine. The effects have been miraculous so far. Along with topical corticosteroids, I seem to have my life back. I really hope the same happens to you!

And remember - if it is herpes, that's super common and will only get better and better as your body becomes more effective at killing the suckers!

[Bocksey in reply to ColdNoodleSoup]

Thanks for this. The more I hear the more I don't think it is herpes. (And I am well learned in herpes now!) The last doctor I saw certainly didn't think it was that. That is why she has referred me to the Behchets clinic in Liverpool. She was very shocked that other doctors had been saying that it was herpes because the sores are so large and painful and I have tried surpressive therapy of a high dose of different antivirals and still been getting flare ups. I have had outbreaks constantly since November. (Probably about 10 so far.) The ulcers look like ulcers in the mouth but much larger. The last one was about 1.5cm wide! I have suffered from mouth ulcers most of my life but have just put up with it. It is extremely rare that I don't have at least one mouth ulcer at any time! I have finally got my appointment through for diagnosis but it is not until December. It is a waiting game now....

[ColdNoodleSoup in reply to Bocksey]

Definitely sounds behcetty to me. I laughed when I heard the rule for Behcets was "over three oral ulcers a year" I was like .. some people get ONLY THREE???

Hang in there and all the best!!

[2106 in reply to ColdNoodleSoup]

If I got less than 20 I was laughing xx

[Jaxxi]

Hang on in there. To help them reach the correct diagnosis in December start to keep a symptom diary and take pics of any ulcers or other skin lesions you get. I did this and came away with a diagnosis on my first appointment.