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Behçet's UK
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How common are 'ulcers that are not exactly ulcers'?

I apologize for the weird headline.

Reason I am asking is:

I am in a situation opposite from a lot of people here. I am diagnosed with Behcets, but I am sceptic if what I am really experiencing at my genital areas are in fact (at least sometimes) caused by Herpes.

It seems as if I have all symptoms 'to ask for', in order to fit into the various checklists for a Behcets diagnose. I just feel as if I would be more sure, if what I experience both in my mouth and genitals looked a bit more like 'ulcers', than they do.

That is why my former post was about where to share and discuss photos.

The background for my diagnosis is about 20 years with what I thought was genital herpes. I was treated for years by a confused dermatologist, because my outbreaks did not blister and could not heal without leaving scars (granuloma).

My dermathologist is perhaps the person in Denmark, that has the greatest experience in the matter of Herpes.

After I got Uveitis and was tested positive for HLAB27, doctors started looking for autoimmune diseases, and suddenly I fitted into the Behcets scheme, as I have also been struggling with joint and spine problems for 30 years.

What is really confusing is, that I actually had Herpes HSV2 DNA found in a biopsy in 2010.

Now I realized, that I might actually have two types of outbreaks on the shaft of my penis. One that is one or two small bumps/granuloma/inflamation that only disappears with an injection of cortisone, and another type, that looks more like herpes and also gives me fever, swollen lymphs, night sweat etc..

I know it sounds confusing. But I would love to hear from anyone with opinions/experience on this matter.

How much can Behcets mimmic herpes, and how common is it?

I am caucasion by the way. Tested negative for HLAB51. My dermatologist just told me, that many rheumatologists in Scandinavia are not sein Behcets as something that I can even have, and that they are wrong..

I do not mind sharing photos, but I do not want to upset anyone. I mean.. It is my private parts. :-)

Thanks and best of luck to everyone here!

7 Replies
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I’ve e read that herpes may be part of the cause of Behçet’s in some patients. See here: ncbi.nlm.nih.gov/pmc/articl...

So it seems totally reasonable that you’d have both! Most literature says that herpes and Behçet’s can be very difficult to distinguish as well. I get fever, swollen lymph nodes, and night sweats when having a behcets flare.

An overly simple experiment: do any drugs help you? If antivirals work, then likely herpes. If colchicine works, likely Behçet’s. Do you take any autoimmune suppressants? I imagine (I’m not a doc) that those would make herpes go wild!

Hopefully you can get some more answers. Could you ask for another biopsy next time you get a flare?

I think I read someone on here who had both actually...

healthunlocked.com/behcetsu...

All the best!

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Hey.

I was misdiagnosed with Herpes for 18months before my Behcets was diagnosed. Apparently the ulcers (that aren't quite normal ulcers) are pretty much the same. There was also a question of Thrush related ulceration at the same time. I had all the treatments for Herpes (even though my bloods were negative) and they didn't do anything. I tried prophylactic doses but nothing helped. It was until I demanded to speak to a specialist (who is now immunology) that I got my Behcets diagnosis.

So in answer to your question, I believe it is quite common to be diagnosed with Herpes before you get a Behcets diagnosis

Hope this helps and you get the right diagnosis for you and treatment soon. The vaginal ulceration I got was absolutely horrendous so I completely empathise with you

Much Love and stay strong

Reply

Herpes and ulcers are different. Morphology wise, herpes will cluster in groups of four, and discharge clear fluid. They will blister.

Ulcers will have a necrotic yellow-off white base, with red edges. They can be filled with pus and will apparently leave scarring in the genital area. Ive read articles, heard from others about this, and am speaking from my own experience. Ive got a ton of white ovals down there.

most behcets ulcers will be MUCH bigger than herpes.

someone just posted a medical article with regards to genital ulcers with photos (lol was that you?) and i thought that was spot on. mine looked pretty much like that. (white female here)

one of the things from way back in the day that helped me, (mind you HSV negative) was that my mouth and genitals pretty much looked the same. so ask yourself, does the mouth match the downstairs mouth?

hope that helps a little.

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im trying to find the article that explained this, as ive found it twice in the past... as upon my diagnosis i found it and then I re-referenced it later for someone else...

But even my gyno had confirmed me on the groups of four. Sometimes its not noticeable because of how small, but it is clusters of four. Hence my 3 ulcers the first time, and 7 the second, helped differentiate between herpes and ulcers (plus they were huge and pus filled)

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Well. My mouth will never mach my downstairs mouth, as I am born a male.. :)

But thanks for your input!

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lol no, i know, but do the sores look the same?

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I was misdiagnosed with Herpes in the beginning. As you can imagine, it just got worse and worse without proper treatment. Biopsies and/swabs were taken during active flares and they always come back negative for herpes. Blood tests always come back positive. Since being diagnosed with Herpes 21 years ago, I have never had a herpes outbreak. If they’re “ulcers” I’d be confident in saying that it’s not herpes ( I’m not a doctor lol). Same with the mouth ulcers.

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