How often do you struggle with genital ulcers? - Behçet's UK

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How often do you struggle with genital ulcers?

Stin4 profile image
5 Replies

Hi friends, hope you’re all doing all right!

I’m just a tad curious how often you guys struggle with genital ulcers? I’ve been diagnosed for around 3 years and only really have had 3-4 flares where that has been an issue. According to my doctor that makes it more probable that my diagnosis really is herpes and not behcets (despite a negative herpes test… I’m SO unbelievably tired of hearing this!!!!!!).

I understand it’s different for everybody but just out of curiosity :)



5 Replies
jaquarius profile image

Hey Stina

I was 23 when I started getting genital ulcers, and I am 27 now. I would get them on and off for years, they were so huge, deep and painful to the point where I now have a tear in my labia from the scarring. However, I havent had one for roughly 2 years. I have no idea why, I think being on the pill made all my symptoms worse, but I had the same thing when I first started getting them, doctors said it didnt look like herpes, but they put me on anti viral medication regardless

Its incredibly frustrating but all I can recommend for when you get them is keep the ulcer as moist as possible, this promotes healing and helps reduce pain. Try to use a combination of vagisil, then a cream with lidocaine, then a layer of vaseline. I found this combo sort of feels like youve wet yourself a bit but its the only thing that actually relieved the pain. If peeing is uncomfortable, pee in the shower in the flow of the shower head (put it at about hip height) or pee submerged in water. Genital ulcers are horrific and honestly the worst thing about behcets, so I feel your pain x

CecilyParsley profile image

Hi Stina, after suffering genital sores and mouth ulcers for over 30 years, I still do not have a definitive diagnosis. The difficulty is when you get them you go to a GP and get the “ herpes” diagnosis immediately. I have had only two biopsies both negative for herpes. I was diagnosed with Lupus in 2009, this was changed to Bechets in 2011, back to Lupus, then UCTD, then MCTD, then fibromyalgia and “ hysteria”, then no fibromyalgia but UCTD. My new Rheumy is veering towards Bechets but no one has seen the ulcers except the sexual health doctor who I went to in desperation when my GP failed to help. I am now getting the genital ulcers at least once a month and the mouth ulcers every other week. I had a nasal ulcer that began to bleed and after eight days had it cauterised three times. I went to ENT yesterday where they failed to put a camera down the one nostril as it was swollen and full of scar tissue. Thankfully no ulcers on my vocal cords so the ENT consultant could not support a Bechets diagnosis. I too am so sick and tired of this too, it is frustrating and I feel as if they don’t believe me. I truly hope that you get sone answers and effective treatment soon xx

012703060610 profile image
012703060610 in reply to CecilyParsley

Any chance you may have Relapsing Polychondritis too? The nasal sores are what got me thinking. I have both diseases and Behcet's usually starts first. RP attacks all cartilage and prominent symptom would be a red outer ear flare (not on the lobe). I had so many people say I was crazy. I didn't care. I went on to find doctors who would listen and now have a proper medical team in place that communicates. These diseases take a lot of different doctors!

CecilyParsley profile image
CecilyParsley in reply to 012703060610

Hi I had never heard of this so I googled it. I do t think this sounds like me. I get ear ache and tinnitus but my nasal issues started when my balanve problems started. I fell smack on my face breaking my nose across the bridge and the Cartledge. As a result I had a very deviated septum. Then four years ago I fell and smacked my nose on the toilet bowl breaking it again. The nasal sores have just exacerbated the problem but thank you so much for the suggestion xx

012703060610 profile image

YES, the good old herpes freak out. For years I had them biopsied, they were negative but no one was concerned. My oral sores manifest into something spectacular. Sores the size of quarters/nickels. Oral steroid solution would bring the pain back to only one week versus two weeks. I rarely get a genital sore now.....and I'm thinking it is when I came off the pill. Saw another post and I also made the decision to get off the pill and have had maybe one sore in the past two years. Enough to get a biopsy vaginally and orally to affirm the diagnosis. I am also a believer in JAquarius comments on handling them. The only difference is that I put Destin (baby butt stuff) as it seems to hold things in place longer.

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