Hello! I’m hoping I can get some advice to see if I’m barking up the right tree..
I’m 25 female and I’ve been suffering with mouth ulcers for the last 18 months - I get one/two/three large ulcers at a time and struggle to eat/talk. They normally take about 2 weeks to heal and reappear 2 week later.
I’ve now got genital ulcers - currently it’s been 3 weeks, I think (hope) they are starting to heal but very slowly. Going to the loo is agony! I’m also extremely tired and getting through the day without a lie down is hard. My ankles have also been sore the past couple of days, but this may just be from not getting enough exercise while I’m stuck at home.
I’ve been to the GP and they’ve tested for herpes which was negative, but have given me antibiotics anyway which haven’t worked. They’ve also done a blood test which showed nothing out of the ordinary and on that they have ruled out any immune system issues. The next step is sending me to the STI clinic for more tests…
From looking online I feel they’ve ruled out Behcet’s too quickly as I believe you can’t diagnose from a blood test anyway?
Am I right to be looking at this? I just want an answer and some help, it feels the GP are just pushing STI when I know it won’t be that.
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Char_123
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Hi Char_123, Your question is the one we all ask when suffering from repeated mouth and genital ulcers and often met with disbelief.
Firstly, as someone who was diagnosed over 50 years ago I have faced many challenges in respect of the various symptoms I have suffered and often met with disinterest by some doctors.
One thing to remember there is no specific test that proves or disproves a diagnosis of Behcets it’s a question of ruling things out, hence the various tests for other conditions.
I also suffer from a blood cancer, not related to the Behcets but you may find something of value from my profile where I mention my experiences as a Behcets sufferer and how I was eventually diagnosed.
Your story matches mine. I started with mouth ulcers and genital ulcers. You need a steroid cream to get on top of the genital ulcers. They are hideous. I've been down the sti route a few times. Once the week after my second baby was born which was a bit insulting.
I manage my condition with diet. I've had steroids a few times which are a life saver but in the last 20 years only had one major flare which allowed diagnoses as I got uveitis and joint swelling on top of diagnosis.
I have avoided all sorts of foods in the past but now eat everything in moderation. I have to avoid refined carbs as the peak my blood sugar and this correlates with symptoms. So potato, rice, bread in small quantities after exercise. Loads of veg, fermented foods including dairy, unprocessed diet and exercise does me good.
Sorry I got carried away with diet as always!! I should have mentioned that it's a good idea to keep a diary of symptoms because it's easy to forget in the long wait for diagnosis. Keep an eye on your skin. Any little (or big) spots that come and go? Any redness in your eyes? These symptoms can be quite subtle and I wouldn't of noticed or connected them in the early days.
I thought my ankle pain was from a running injury, but I couldn't remember when it had happened!!
I started at 9 years old with the genital ulsars fevers flu like symptoms off and on for years blood work for me didnt show the hl... marker so until i got little pimple like pustules on my stomach (biopsy done) and mouth ulsars (need 3 symptoms to diagnose) it was trial and error...urination was excrusiating ...(i saved toilet paper rolls got family to save them too.. and used one every time i peed to pee through so urine didnt touch the open ulsars) bactroban cream....prednisone to treat flares good luck im so sorry your going tgrough this
it sounds like bechets I’ve suffered with it for the last 15 years first came on when I was 13 and I’m 28 in a few weeks very similar to youself when I first had it alot of mouth ulcerations would hang around for 2/3 weeks ago away and come back 2/4 weeks later, it took me 5 years of going to 8 different hospitals in London and multiple departments and professors who all didn’t have any idea what was going on I was referred to oral medicine in guys hospital who picked up pretty quickly that it could be bechets but had to wait till I was 21 to get a test which was still inconclusive I will say mt condition has got progressively worse the ulcers consume my mouth for months at a time even with steroids which I would not recommend taking unless you’re in a horrific way as they are a very dangerous drug I’ve recently been doing some research into stem cell treatment in the United States which starts around 10,000$ be goes up to around $20,000 In the uk starts at £90,000 there was a research study that found in 80 of bechets cases the patients went into complete remission and the condition never came up again after I’m going to fly out this summer and get the treatment as there’s no cures on the NHS and all the treatment at best will slow flair ups but for me nothing has helped and I’ve been pumped with drugs for the last 15 years which have subsequently made my condition worse and cause other health issues il update this tread and the main bechets page on here once I’ve had the treatment as I believe this could be the answer for alot of people it’s just very inaccessible In the uk
hi there , yes your mouth ulcers and vulval sores are BEHCETS. no point in giving antibiotics for Herpes it is a virus do not take any more.After having ulcers in my mouth for 23 years and getting nowhere fromRheumatologist i saw a Gastroenterologist whom dianosed it immediately . On immune therapy i have not had another bout of the ulcers or the sores since , hope you can get some proper help soon. i was told that Behcets is a rare disease and how could i have it! i am anurse i understand what you are going through. My gut is also affected as are my ears. Try not to hesitate and if unsure get your eyes tested as well as they can detiorate quickly.
Have they tested your inflammation levels ? Mine started the exact same way ...but my joints hurt since I was 5...I'm 49 now. A rheumatologist is usually the way to go when being diagnosed. Blessings you get figured out quickly
Hi there! Sorry to hear you’re going through this. Firstly, your GP is wrong as Behcets patients can have normal CRP and ESR (which are non specific inflammation markers), and there are no specific blood tests for Behcet’s. However, just genital and mouth ulcers isn’t enough for a Behcets diagnosis without other symptoms, which might be another reason your GP has dismissed it. Of course, you could develop other symptoms that point to Behcets, and recurrent genital and mouth ulceration is a big part of the picture anyway. But atm based on what you’ve said you wouldn’t meet the diagnostic threshold.
However, I would still recommend pushing for a specialist referral - ideally to a Behcets Centre of Excellence if you’re in England. They are the best place to have behcets ruled out or diagnosed, and sometimes continue to see patients with an incomplete diagnositic picture.
Most UK GP's have never heard of Behcets and even when faced with it completely rule it out. My advice is take photographs of all the worst ulcers you have. Take photographs of anything that is unusual for you on your skin, joints, eyes. Keep a diary on everything and make a chart, keeping this short a precise qith the full details available if you need it. Keep presenting this and especially photographs to the GP's, this is your evidence of what you are having to go through.I suffered for decades with Behcets with no diagnosis, it was only when I showed my chart and photos to GP and asked them to explain what was going on and they could not provide a satisfactory answer. I asked for a referral to a Rheumatologist because I believed I had Behcets, I took a brief explanation to the GP to read about the condition and when discounted I challenged how many patients did the surgery have with Behcets and were they familiar with Behcets... No they had no idea. Reluctantly they referred me. I was with the Rheumatologist minutes before she diagnosed me with Behcets.
What I would advise you to do is also find out from your main hospital which department and consultant treats Behcets patients. Thus is important because you may eventually get referred and still sit in front of the wrong consultant. I personally had previous appointments with a Rheumatologist, Gastroenterologist, Gynaecologist, Oral and Maxillofacial and ENT, not one of them could explain why I had oral and genital ulcers, each one wanted to treat them separately and each one had no idea why they flared up and down.
No blood tests, swabs, tests of any type have provided a diagnosis for me. It all boiled down to photographs and a chart and doctor who knew of the condition. The huge university hospital I attend only has 3 Behcets patients. None of my GP'S had ever experienced a Behcets patient and even now I am still tge only one. Genetics would not test HLA-B51 because the professor at the tome said only 4% of Behcets patients worldwide would return a positive result meaning all the rest of patients would be diagnosed as Behcets, despite the clear clinical findings.
All I got from my GP’S was but you have nothing wrong with your eyes, I asked them how they knew since they had not been checked. They said but you do not have skin issues, I did but never associated these with Behcets becsuse they were not bothersome. I did not know at the time that joint and muscle problems, gastric problems, tonsillitis all had a link to Behcets and yet I had all this too. It was only through getting myself in front of that consultant who had Behcets experience that I got my diagnosis. I cried when I got my diagnosis because finally someone took me seriously and joined up all of my ailments. At the same time she diagnosis me with Ehlers Danlos.
Insist the GP’S refer you, but make sure you tell them who you want a referral with and why. You might be lucky and get s referral to a Behcets centre of excellence. Failing all of this you may have to locate a private specialist a pay to see them, just make sure if you do this that your GP is aware of this and that they will recognise any results from that specialist. I say this because a friend had her diagnosis result turned down by her GP because they did not recognise the specialist and they had not made the private referral.
Meanwhile see if your GP is willing to try you on a small dose of Colchicine, this is usually the first treatment tried for oral and genital ulcers, GP's prescribe this drug everyday for other routine conditions.
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