Behcet's Syndrome Society
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Progessing symptoms

I was diagnosed with oral and genital ulceration syndrome when I wa at university after being hospitalised with severe and extremely painful ulcers in my genitals. I was under a speacialist but had no other symptoms at the time and they stopped altogether whilst pregnant. ( I often say giving birth was a breeze after the expereince with ulcers I had.) I am now a student nurse but I have been getting more and more pain in my wrists, thumbs and hips, oral and genital ulcers and skin lesions have appeared on my arm and face. I am worried how this is going to progress and how it will affect my ability as a nurse. When I am at work I get crippling pain across my lower back and hips and feel my wrists have minimal strength. I am no longer under the speacialist as I was discharged when I was pregnant. I dont know what I should do, should I just wait till the symptoms affect me or go and get reffered again.

4 Replies

Was it a BD Specialist and were you happy with him/her? If yes, then get a re-referral. If no, I suggest you get some recommended Specialists from the BD Society and ask your GP to refer you to the most suitable. Clearly your symptoms have progressed so the sooner you see a specialist and start treatment the better . BD symptoms come and go and vary from flare to flare - you really need to be monitored, even when you have no symptoms, so you are in a system and have support available. This won't necessarily affect your ability as a nurse - some treatments are very effective and people live normal lives. To get this process started, I suggest you see your GP about all your symptoms, as they may not all be BD related and my require a multi disciplinary approach.


You need to go your GPs and demand to see a specialist in autoimmune conditions mate. They should point you to the right people.

Good luck, Tim


I would suggest that you do go and get re-reffered. I was also a student nurse after returning to study after looking after my children for 18 years. It was my time to do what I had wanted. Unfortunately my disease developed further and I had to give up. What I would say is nursing is such a physical job but it also depends what branch you are in. I was mental health and I am sure if I had not mangled my knee I could have got through it. See how it goes and get a specialist as perhaps meds could help you. I have an amazing dermatologist. If you would like info on my meds I get for my sores and ulcers just message me. Keep positive.


It would be a good idea to be reviewed by a specialist on a regular basis, and to know that you have the support available should you need it, is also important. I agree with Jazzy, that nursing is stressful and physically demanding - having worked in the health service for the last 30ish years I can speak from experience.

Ward work generally does not allow much time to sit and do the essential documentation, let alone to sit to rest ones achy back or joints! Its a question of adapting how you do tasks to make it easier for you.( I never bend to empty a catheter, I always kneel).I also ensure good supporting shoes - with orthotic inserts, and always have ketaprofen gel and a tens machine in my locker - which has been used on many occasions . I am conscious of taking pain relief while on shift as I need to be clear headed, so tend to take a NSAID and Paracetamol over the day as needed, leaving the heavy duty stuff for off duty.Rest as much as you can when not on shift - not always easy to do, but will help.

Self refer to occupational health - even if you are not off sick - get them on your side at an early stage. I have found ours very supportive. Management do not need to know about your Behcets. Be cautious what you tell them.

And if you can go to work each day with a smile, acting as though you are 100% you will be a fantastic nurse! Good Luck!


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