Behcet's Syndrome Society
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Suddenly all is quiet....well almost

Hello everyone I have asked you questions before and you have all been so helpful that I wonder if you could help me with another.After just over 2 years of being very sore and itching like mad down below all of a sudden it has gone very quiet,I still want to scratch when washing but no where near as bad as it was.At the end of April I had a mouthful of crater ulcers as I call them and sores and tears down below.Ifelt generaly awful and then it settled down and now have had the longest time of being relatively compfortable.I have just had myletter with appointment in October to go to the London hospital and I`m afraid I will be wasting peoples time.What I`m asking is is this normal after a bad flare with whatever this may be.I`m seeing my G.P this afternoon so if anyone could advise me it would be great.Thanks somuch Butterfly54

3 Replies

Hi Butterfly

My advise would be to keep your october appointment. Flares that come and go are part of behcets and they do understand this in at the centres os excellence. genital ulcers often leave scarring so drs can see this even if no ulcers present at timee of appointment. by the way prof Fortune, who often sees new patients, is a women which might make examination less of an embarresssment. i know we should not worry about such things but still something I appreciated. certainly no one will jusge you as wasting anyone's time.

ca you chnge the status of your post to private. Go into edit thenScroll down to end of post and you will see an option which is something like 'community only'. Once locked a small padlock appears.

Kind regards,


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Hi Butterfly54, good luck with your GP appointment and with your appointment with the Behcet's CoE in London in October. You may find it helpful to write down any symptoms you have experiences over several years, whether or not you think they may be related to BD. Write down what happens in a flare up and how long they last. This may help you and the doctor at your appointment. You may like to take photo's of your mouth ulcers at the different stages, perhaps with your phone and take these along with you too. This is our website and our helpline number 0345 130 7329 Best wishes to you.

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Yes do keep the appointment, anything could happen between now and then. Also as l tell everybody on the site ,keep a daily diary, take photos of any ulcers, lesions etc, keep a list of any meds, creams etc and take all this with you in any appointments. This even if you are feeling ok on the day you can tell and show the doctors what it is like to be in a flare. As to your question re flares, we are all different in the way the disease treats us, the symptoms we get and how they are treated. There isn't a quick fix and we all find different meds which help us but yes many of us have remissions which can last from a week to months, so it is normal.

Hope this helps and good luck with your appointment.


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