Severity of genital ulcers.: Quit grim and... - Behçet's UK

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Severity of genital ulcers.

CzarnyLis profile image

Quit grim and graphic. My GP reckons I have Bechet's because of severe genital ulcers i get on my glans. Just wondering whether the severity of mine is normal. I've had this breakout for about 5 weeks now, and have had a least a dozen ulcers, many are small and grouped but there have been larger ones. They don't seem to stay for long and last for about a week before others pop up. It was at it's worst around 3 weeks ago and has seemed to calmed down a bit but it keeps flaring up again as I think it starts to get better. The sores are usually a few mm in diameter and appear slightly off white/cream coloured and are very painful to touch, not unlike the mouth ulcers i frequently get.

Any suggestions for treatment or how long you reckon it will last will be helpful, thanks.

7 Replies

Did they rule out crohns and ulcerative colitis for you? Did they rule out b12 deficiency? All of these can cause ulcers too.

Are you on colchicine? This can help reduce size and duration of ulcers.

I used colchicine for about five years and learned that if I can manage my diet and stress well enough I can avoid the ulcers in the first place. I use a 100% sucrose free diet (found out I’m sucrose intolerant) so it’s meat/fish, fats and a veggie for the most part. I avoid eating out and eating processed food. That honestly was the game changer for me.

I honestly believe food intolerances are severely under diagnosed and mine started when the behcets started. The test is called a disaccharide test and it’s done when you have a stomach endoscopy.

Other than that, I’ve never had the opportunity to use it- but using a short term course of steroids can help. I’m only a fan of using steroids with using lifestyle changes bc people generally feel amazing on prednisone but continue burning that candle at both ends so when they’re off the drug- the ulcers come back wjth a vengeance.

I’ve personally used neosporin down there and just loose clothes.

Good luck and I hope you can narrow in to your ulcer triggers.

CzarnyLis profile image
CzarnyLis in reply to rooser1

My symptoms don't match Crohns or colitis so i doubt its them.

This is my first bout of ulcers so I'm figuring out which medicines would help, I got a tube of hydrocortisone and it seems to have helped slightly, other than that its just been trying to put up with it and having hot showers and baths because they really help the pain.

Ill definitely try and figure out if i have any food intolerances, i suspect im dairy intolerant, so cutting that out should help.

Thanks for the suggestions, if my tests come back negative ill definitely figure out what is causing my ulcers.

lesleyg profile image
lesleyg in reply to CzarnyLis

Hi, recently there was a similar post with a lot of replies and suggestions. Emla (used in moderation) gives hours of relief.

CzarnyLis profile image
CzarnyLis in reply to lesleyg

Thanks, ill have a look.

Hi, I have recently been diagnosed with bechets due to chronic mouth and genital ulcers. All other tests for chrones etc were ruled out. I have been put on a mild dose of cochicine which has made a dramatic improvement however I am currently going through an outbreak as I have the flu. Listen to your body, mine always flares up when I am run down, I’ll, stressed etc. Get plenty of rest. I hope you are feeling better soon, I know how hard it is xxxx

CzarnyLis profile image
CzarnyLis in reply to ydt1983

Thank you. I used hydrocortisone for a few days which seems to have helped and the flare up has nearly gone, thank god. Ill look into colchicine for next time. I've been rather stressed recently which may have contributed. Mental health issues definitely do not help, de-stressing will definitely help in the future.

Hi I’m sorry you’re dealing with this.

It’s sadly one of the painful things we all have had to go through.

I did find sitz baths, Bag Balm and Penaten Creme helped me, until recently I was prescribed Temovate, (which was amazing for pain just can’t use it for long term)

I’m still trying to figure out mine, my doctors seem to think I’m not controlled systemically yet and will have to change medications. (Currently on colchine and plaquenil)

I just keep in mind I have been misdiagnosed for a lot of years so it maybe that I’ll have to change medications until it gets controlled then work back down to the lesser ones. (I hope so 🤞)

I think food sensitivities, environmental toxins play apart of it.

It’s just finding all the missing pieces.

Good luck this is a great forum to be apart of, I’ve found the best information and helpful information to take to my doctors appointment.

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