Behcet's Syndrome Society
4,066 members3,454 posts

Can any one help?

Can any one help?

Hi I've had ulcers down below for around 2 weeks now does anyone know what they think this is? I'm waiting test results from gum clinic but the doctor is sending me for further testing for behcets as she believes that's what it is? The ulcers are the most painful thing I've ever had in my life I would give birth again drug free any day over having these.

12 Replies
oldestnewest

Poor you. Yes it could be ulcers from Behcet's. Have they given you any treatment?

Reply

Because I went to the gum clinic and it the docs I'm waiting for test results first to confirm if it is an sti or not I would be extremely shocked if it was but I can't rule it out. So they have put me on Valtrex in case it is herpes but I've finished the course and I'm no better at all I'm back for a check up today so hopefully the doc will look and start getting some answers

Reply

Oh God that looks farmiliar. Completely what my genital ulcers looked like before colchicine. I hope you have the same relief I did if/when you go on it. Or if it is herpes, at least you know it'll never be as bad!

Hang in there. Weeks seems unbearably long but once you're diagnosed properly it'll get better. Took me five months of herpes treatment before I was diagnosed with Behcets. Average diagnosis is actually 4 years! We were the lucky ones!

Warm bath with Epsom salts were a super amazing relief if you can

Reply

Thank you so much for the reply gives me hope that it's not herpes but it scares me to absolute death it could be behcets too! I'm going to try a salt bath this morning I'm back in the hospital today so see what they say definitely the lucky ones I think from reading how long people have suffered in comparison. I'm wondering if there's further infection for me the smell is horrendous and extremely embarrassing

Reply

Oh man yes I remember wondering - should I be relieved it's not herpes or petrified it's Behçet's?? Luckily, if it is the latter and it's diagnosed quickly your prognosis is much better. It's also better in women and adults (vs children) so that also bodes well. And hey if it's herpes it'll also get better with time. I was shocked at how much my friends all supported me through herpes when we thought that's what it was - it really is very common.

Also omg the smell. I think I had like mentally blocked this all out and you're reminding me of it all. I FEEL YOU. It was agony and repulsive and SO humiliating. My boyfriend actually left me because he couldn't handle the disease and depression that came along with the shame.

Now though, with magical colchicine, it's just occasional tiny sores - they're annoying but no longer debilitating! And boyfriend was obviously a terrible human so it's all good. In conclusion - it'll get better!

3 likes
Reply

You have been such a huge help thank you so much! X

1 like
Reply

It does look a bit red and swollen so infection is a possibility which would explain why it is so much more painful. Ask the doc to take a swab first mc&so and then you'll get the right antibiotics.

1 like
Reply

I know how you feel I have ulcers here there and everywhere. Suffered with Behcet’s for 40 plus years. What my gynaecologist give me is Trimovate Cream 30g it really does help use it all over my body for ulcers. I also have instillagel which is a local anaesthetic really does give relief. Your doctor may be able to prescribe these. Also I was told never to rub my ulcers but use a hair dryer to dry them. Sounds daft but works. Hope this helps all the best. Xx

1 like
Reply

Looks exactly like the ulcers I get. I have had symptoms for years but only diagnosed with behcets about 6 years ago and cochicine definitely helps keep them at bay.

1 like
Reply

Deffo looks like Behçet's ulcers poor you they are horrendous hopefully you will get a diagnosis soon I was in hospital for 8 days tested for everything 2 weeks after being discharged I was diagnosed with Behçet's so quickly get well soon x

1 like
Reply

Looks a lot like the ulcers I get. For immediate relief I make ice blocks from the fingers of disposable gloves, its the only thing I have found that helps before drugs kick in. I hope this helps good luck.x

1 like
Reply

Colchicine is the drug of choice for the ulcers, upstairs and downstairs but changing your diet is what will help most. Is there something you eat most days that has preservatives or pesticides in? Eg bread and raw tomatoes and some wines is what does it for me. If I don't eat these I am ulcer free. Plus you might want to try stopping /cut down on sugar and dairy.

I feel for you....the ulcers are really rubbish. Keep your chin up ☺

2 likes
Reply

You may also like...