Behcet's Syndrome Society
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at my wits end

I can't take the pain of these ulcers and everyday for over two weeks there is a new one . painkillers do nothing and as my doctors only said she thinks I have bechets I'm sure I will have a ling wait for treatment to start .but I can't wait I'm so run down .I'm stuck in and have been for two weeks and doctors just say wait to see the hospital doctor but I'm only in to see a doctor about the ones down below what about the ones in my mouth ? sorry to moan but I have 6 children and haven't spoken to them in weeks and they keep seeing me cry

11 Replies

I really do feel for you, it must be awful to be in limbo like this :-(

Have you got some topical treatment from your GP to help with the ulcers, both mouth and down below? They should easily be able to prescribe something that would at least take the edge off things - others on the site might be able to recommend ointments/creams or whatever that they've found beneficial and other remedies that you could try.

As far as the wait for the hospital dr is concerned, does your GP know how much you're suffering, because perhaps they can hurry things along. If not, you may be able to contact people like the rheumatology nurses at the hospital - in between my appointments I can ring them if I'm feeling rough and they are very helpful and supportive. Maybe your GP could set this up for you?

Lots of hugs coming your way to help you through this...

Klaris x


You poor love. I know it's very hard to do anything when you feel so low and have so much pain, but I do urge you to read through the responses to all your other questions about ulcers and try some of the things suggested now. If you are a member of the Society you can email their medical panel for advice, but the reply may take a while.

Meanwhile, it may be a good idea to ask for referral to a Behcet's specialist - at a Centre of Excellence if you are in the UK, though the doctor you are seeing for your other ulcers may know enough to make a diagnosis and put you on the right treatment, or be able to refer you, it might be quicker to take matters into your own hands.


People who dont have ulcers like us can understand just how painful and cruel they can be, You need to get back to your Dr to tell him you need this dealt with. Have you ever used hydrocortisone 2,5mg buccal tablets. They tase horrible but they seem to help me.



I really think its unacceptable if you are in severe discomfort and struggling to should go to a walk in centre or an A&E department. My GP wouldn't leave me in that state and I don't think its acceptable to be offered no solution. All the best Jill x


thank you all so much after a telephone call to my go where I broke down she has now phoned the hospital and got me in on Wednesday and they told my go what to give me . I'm now on steroids 6 a day and a steroid mouth wash three times a day . still feel ruff but so happy that I'm being listen to .. thank you all for your kind answers x


Thank goodness you made that call! I hope the steroids kick in quickly and you soon feel much better and happier. xx


Hi Sam

So glad you got your hospital appointment for Wednesday, hope the steroids kick in soon xx



You poor darling, i can emphathize with you, i also get severe ulcers amongst othet symptoms, but the ulcers get me evrytime. I'm a peoples person n love talking n joking.

I'v just recovered from the worst flair up i'v had. Was ill for 4 months recurrent deep scarring ulcers, couldnt talk, eat or drink for that matter. Cried with pain at the dining table, there are people in this world craving for a little morsel of food, yet i had 2 course meal on the table and couldnt eat.

Am on the full whack of steroids at the mo started on 22 tablets, soon setteled evrything.

I'm bit ova philosopher too, when Allah(god) takes something away he will replace it with something else. My husband and children kept me going.

I know its difficult having to watch your children see you in pain, but this will mature them and mould them into becoming helpful, caring and symphathetic individuals.

The steroids will soon sort you out and ask for the xylocaine spray for your mouth ulcers n emla cream for the down belowd, av found these to be the best.

Hope you get betta soon

Take care,

Abby xxx


I do feel for you and as many before me has said people don't understand. I do find the docs look in your mouth an say how awful it looks.......but that doesn't help.

I have been using ( in Australia ) a tacrolimus mouthwash. It is made up by the hospital pharmacy and seems to work well.

Good luck getting to see the doctor.



thank you all , I finshed my course of steroids but in a day I started to flare and today I felt really bad so my gp gave me another course today , can't believe I flared up a day after finishing my last dose , will this happen every time??


Hi sam

This can happen when you are in a flare...but it sounds like the steroids are helping a bit and now they know about the one's in the mouth, it will show the doctor that you need more investiagation and focused medication.

Between now and next wednesday try and get yourself together and put a short history in note form, include the medications and any improvements etc. Keep it to one page and try and take some photo's just in case they improve before the doctor sees them.

Well done for confronting your GP as this will help you to get the right treatment and I am sure your children will understand that you are trying your best to get better...and that's all anyone can ask.

Keep going



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