My story

Hi Everyone,

Just a bit about me. I am 44 yrs old and feel at my wits end. Over the last 8 years I have suffered with sever mouth ulcers. Going to and through to the hospital to be told it will burn itself out as of yet he hasnt and is getting worse.

Over the last 3 years I have notice disomfort in the lower region. I have been back to the doctor who is now refering me to dermatology. He said it is very unlikely I have BD as this is very rare and if I do I would be the only patient he has had in his career that suffers with this. Of course that is no help to me.

I also suffer with tiredness and have started to suffer with bad headaches to the point I have to go to bed only to wake in the night with the same pain. Although normally when I wake up in the morning it does seem to have shifted.

I also suffer with real itchy skin to the point I can scratch and draw blood.

I am in work as we speak in extreme pain as I have ulcers down the lower region. When I wee the pain is so intense. I have looked and it is read sore and looks like it is weeping is this normal? I am embarrased to go back to my doctor but I know I need to as this will never be dealt with and I really want to know what the hell is wrong with me.

Can somone please help me or give me some advice?

17 Replies

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  • Hi Claire

    Welcome to the BD site. I would persevere and try to see another Dr if you can. If not see your Dr and insist on a referral to a Rheumatologists as well. I feel your pain as I was in your position for 2 years before I got a diagnosis and I know a lot of people on here have taken years to get their diagnosis'.

    Keep strong and keep going to the Dr until he/she listens. You need to be seen while you have the ulcers. If you are desparate go to your local Sexual Health Clinic/ GUM clinic. They are professionals and they can rule out any other reasons for the pain down below and if you explain about the possibility of BD they may know more than your GP.

    Feel free to whinge and moan on here as we have all or most of us been where you are.

    Hugs

    Angela

    xx

  • Thanks for the reply Angela,

    I have been to the doctors when I have had the ulcers upsairs and downstairs so to speak reason he is only now sending me to dermatology.

    I do worry about it being the herpes virus as I have read that people are wrongly dignosed with this....would be devasted as I have been married for 20 years.

    I will make another appointment to see the doctor and my hospital appointment is on Monday so I will be able to show them the symptons I have been experiencing.

    Big hugs back (:

  • Hi Clairey

    It is the most difficult thing in the world to not be diagnosed. People always go on about suffering with diagnosed conditions but never give a thought to those who haven't been diagnosed.... it's a really tough road.

    It might be helpful if you could write a one page medical history outlining symptoms, dates, names of dr's and treatment/tests if you have had any. Keep it to one page and short sentances so that the doctors you are seeing can read it easily. Also taking photo's in case the symptoms are not there when seeing the specialist is really helpful to get a quicker diagnosis and treatment.

    You could also ask your G.P to refer you to the Centres of Exellance or a specialist near to you that deals with Behcets

    this info can be obtained from the Behcets Society on this email

    info@behcetsdisease.org.uk

    Other than that as Angela says go and visit your GUM clinic when the downstairs ulcers/blisters have manifested so they can take swabs etc and elliminate things like herpes as you are right in saying it does get misdiagnosed sometimes but the GUM clinic is much more up to date now.....so should quite easily be able to exclude herpes etc.

    Make sure you prepare yourself well with the info I suggested, before you go anywhere and Good luck with it all

    Andrea

  • Thanks Andrea..

    I am trying to muster up the courage to go to a GUM clinic this eve just to elimanate things, being married for 20 years this is something I find hard doing but I know I must... thanks for your help (:

    Claire x

  • I hope you can manage it and it proves to be helpful.

    I do understand how it is as I was wrongly diagnosed with herpes around 25 years ago, which obviously is a long time ago now and things weren't that good then. Behects was so rare that it wasn't even thought of then, but as I understand it the GUM clinics are used to considering behcets.

    The clinics are much better now and can eliminate this and other conditions much easier and more straightforwardly.

    If you mention the possibility of behcets they will take this into consideration and it may even help you with the final diagnosis.

    I am sure your husband will understand if you explain it to him this way as many of us here have been down this route at one time or other.

    Good luck

    Andrea

  • Hi Clairey.

    Go to the GUM clinic; my diagnosis, suspected by my GP was confirrmed by a sexual health consultant, and he has been brllliant; I had to be catheterised for a week my ulcers were so severe, he has referred me to Prof Moots with whom I have an appointment in a few weeks, as well as getting me appointments with opthalmology and rhuematology whilst I was in hospital. The genital ulcers are horrendous and if the pain prevents you from urinating kidney trouble awaits. Pee in the shower so that the water dilutes the urine and relieves the pain, and ask your GP for instillagel which is an anaesthetic gel you can slap on for instant soothing. Don't suffer in silence or be fobbed off, and please don't not get the help you need because of any perceived stigma of GUM/sexual health clinics; you will be trreated with the utmost respect and the staff are kind, thoughtful and supportive. Good luck.

  • Hello Claire,

    I sympathise with you 100%. I was in the same boat as you about 12 years ago. My GP said it was herpes, even though he didn't take a swab to confirm his diagnosis. I also had been married several years. When I kept returning, he implied that I was visiting him too often. I was feeling exhausted, head-achey, joint pain, had IBS symptoms as well as ulcers. So I didn't go to see him for three years because I began to believe I was a hypochondriac!

    It was when I had an appointment with the practice nurse (I didn't want to see the Dr because of his attitude to me previously) that something was done about it. She said she had never seen anything like my genital ulcers (I could hardly walk because of them). She called in another doctor in the practice who said I needed hospital treatment urgently, so eventually, after many years of pain, I received the correct help and treatment.

    Recently, I needed the help of a gyneacologist who told me that he held a vulval ulcer clinic. I believe Behcet's disease is being considered more often now.

    If you read this after to your visit to the GUM clinic, I hope you have received the appropriate care. All you can do is keep telling the medics how it is.

    I wish you all the best of luck, and hope your diagnosis comes earlier rather than later.

  • Well glad to say went this morning was the worst thing ever but as you all said they should me the upmost respect.

    They are taken swaps and they are testing me for everything. They are treating me now with medication for herpes as they seem to think it is more likely to be that. I really dont know? They make it sound so easy saying you can inface infect yourself with the herpes virus so im now thinking maybe I do have that?? This doesnt explain my constant mouth ulcers though.

    I have to wait back from the hospital for the results so we will see one way or another but glad I have gone and that part is all over.

    Thanks everyone for your support. (:

  • I think the best thing is probably to get a referral to an immunologist, and try to get one who is in a centre where the more rare immune disorders are diagnosed and tested for.

    When I was an in patient on a hospital ward that dealt with rare immunological disorders, I found that often many of us suffered from very similar symptoms despite having entirely different diseases and causes. Symptoms are just the end result of disease processes, and often the root cause of those symptoms can be different. For example, I shared similar symptoms to other patients who had Crohns Disease, Ulcerative Colitis, Pancreatitis and gall bladder disease, endocrine disease, Addison's Disease, Rheumatoid Arthritis, Scleroderma, Multiple Sclerosis, ME.....the list is endless. I have met all these types of patients over the past 16 yrs that I have been very unwell.

    I was searching for answers when I was first unwell, and kept coming across new things and speak to patients, who would be convinced I had the same as them because of the exact same symptoms. Most immune disorders end up with similar symptoms because they are multisystemic, in that they affect various major organs and systems throughout the body. A doctor is unable to do a test for many of these types of disorder, so where there is no definitive test the diagnosis is given by a process of elimination.

    E..g. it must be Disease Z, because it is not Diseases A-Y we can test for.

    That is bad news for Behcet's patients because many of us are unwell for many years at a time, with a variety of things going wrong and have many many tests before eventually a doctor comes to the conclusion that in the absence of all other diseases, the collection of symptoms recorded leads them to give a diagnosis for Behcets.

    Before they can give that diagnosis, a lot of patients like me get labelled with 'probably Behcets' and others with 'possible Behcets' diagnoses first. In my case, I got treated for Behcets a while before they had decided, because they said ''you know what? it could be a number of things, but whatever it is out of these possilble causes, they all respond well to immuno-supressant therapy, so the treatment options remain very similar. To a scientist, proceeding on that basis and not ever knowing for sure is a viable diagnosis until further evidence presents itself. But to patients, not being able to call it something for definite can cause all sorts of problems with work, sickness benefits, and just believing in your own sanity or it can affect your friends and family's level of support. But the best you can do, to get a diagnosis, is to ensure that when you are unwell that it is well documented and recorded officially. I spent many years going around in circles where professionals had nor recorded symptoms, because they did not think it was relevant at the time...and that really slowed it all down.

    So this is why lots of us have the same treatment as other immunology patients, because they work.

    The important thing for you is to try not to worry about what it could and couldn't be, but to try to help your doctor be as scientific about it as he can. This means, if you have symptoms try and get those symptoms officially witnessed and recorded. I had trouble for a long time because doctors would tell me they had not seen the expected symptoms of certain diseases themselves and the problem was that doctors could not take anecdotal evidence from the patients themselves, but quite often consultants are not present when the symptoms are occurring...especially as you might wait to see them for many months after something has occurred, or have a certain test on a day that it is just not happening.

    I used to get lots of pancreatitis attacks, but then not have a scan of the pancreas until about 3 or 4 mths after each attack due the waiting lists for MRI or CT etc. It was only whilst in New Zealand I was the ONLY patient in A and E at a very quiet hospital (mainly quiet as there was a volcanic eruption going on behind it and that frightened patients with less serious conditions away!) that I had the luxury of having my pancreas scanned by CT and MRI right on the day of the attack, and every 48 hrs afterwards for about a week and a half. It showed that my pancreas was swollen and inflamed during an attack, but shrank down to normal-ish size a few days after the attack even though the pain during it all was nearly always constant.

    So if you want a doctor to make the right diagnosis, you will need to remember that he is a scientist. Yes it is rare to get something like BD compared with the probablity of it being anything else but that does not mean you can't get a rare disease as we all have. My constant peeing and watery urine was dismissed as not being Diabetes inspidus due to its rarity so nobody thought a test was necessary and after years of suffering that part of things, i eventually had simple 12 hr test for DI and was found I did have it, against all odds.

    But to help your doc you he will need scientific evidence of your symptoms. When you get a symptom if you cannot get to a consultant quickly enough, then make an appointment to see your GP so that they can officially observe that symptom, and ask you the right questions as and when it is happening or run tests to support a diagnosis, in between consultant appointments. I have had several sore abcesses, boils that broke open into ulcerated parts on my downstairs department too, but the symptom has never recorded on my file because a doctor has never seen it when it is happening.

  • Well done Clairey

    That was so brave of you because I know it isn't a nice experience. I am glad that they are trying the treatment for herpes as this will also help with the final diagnosis. If the anti-viral medication doesn't help, it is a good sign that it isn't herpes...so make sure you take the medication as they have said and make a note about it on your history page [if you have done one].

    You might find this wierd and embarrasing, but I actually took photo's of the ulcers/blisters/pustules on my downstairs parts, including my bottom. I only focused in on the spots so that it wasn't too obvious what part it was and I showed them to my Rheumatologist along with my history....this was the final info he needed to formally diagnose me. I printed them out myself with the date showing and I now have an album showing dates of flares etc.

    I know not everyone will be able to do this but if you can, it will help I am sure

    Keep in touch

    Andrea

  • Hi Andrea

    I think that was a great idea - save a lot of embarrasment and as you said it was the last thing needed to get a formal diagnosis.

    Also, sometimes we wait so long for an appointment the symptoms have gone away. Just out of interest sake my scars down there have been described as 'horrific'. I blame a very disinterested professor who gave me a sulphur based cream and then didn't want to know me when I went back in with a reaction (I can stilll remember the looks on his registrars).

    Clairey - hang in there.

    I was very reluctant when I has sent from immunology to dermatology (because of previous dermatologists) however the first doctor to see me diagnosed me on the spot with BD. I think someone else has mentioned about going to the immunology department of a large hospital - you have more chance of someone agreeing there is something wrong. What makes me mad is that as a layman (or woman) I realised very quickly if you have mouth and genital ulcers something is wrong.

    Thinking of you

    Lesley

  • Hi, Not good to hear you have been suffering. Your experience sounds similar to mine. I spent a fair few years going round the houses at the hospital and was constantly going to see my G.P with symptoms. I can totally relate to how you are feeling, it's not a pleasant situation to be in, bless you.

    Like others have said try and see another doctor. It was my G.P that actually initially thought I had Behcets. She referred me to a Rheumatologist and I was diagnosed last Summer.

    Been for a follow up appt today after having a nasty flare back in October and I am pleased to say the meds I am now on are suppressing the disease.

    I'm not going to say it was an easy road to diagnosis as I was even referred to the GU med clinic and told I probably had herpes at one point. No guessing that the results came back negative!!

    Was also misdiagnosed with Crohn's and then diagnosis withdrawn.

    Keep persisting with docs and I hope you get sorted sooner rather than later. Best wishes x

  • Well just an update. Had results back yesterday have the herpes virus with she said was HSV1. I was totally devestated at the news but after talking to a health worker there is still a chance this still might be Behcets. I saw a consultant today in dermatology regarding the ulcers and they are going to do a patch tests on me to see if I am allergic to anything. I must say the treatment they have given me for the herpes virus which they gave me at the GUM clinic as really helped my mouth ulcers. I still have them but there is no pain which I am so relieved at. Hopefully I will get to the bottom of this as I am still a little bit confused.com. I would like to thank everyone for taking the tme to comment I this blog it really has helped me (:

  • I am glad that they are piecing this together and the medication is helping, but not glad that you have the herpes virus.

    Hopefully you are nearing to getting a formal diagnosis.

    Take care and keep in touch.

    Andrea

  • Yes, I have had a biopsy of what you explain and was indicated as BD. The doctors can make you feel like a criminal for suggesting such a "rare" disease...

  • Andrea, just curious what meds did they prescribe that is helping your mouth ulcers. I'm glad u found answers soon quickly. It took 12 years to get my behcets diagnosed as ull see w many people on this site.

  • Sorry my lost post was for claire

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