Ulcers

[Ciannajustine]

Hi Okay, my names Cianna I currently started developing ulcers about a couple days ago i went to the doctors and they told me i have a UTI and that it's a possibility i can have Herpes 2 but I don't know what to think because I've been in a relationship for 1 and 2 months and my boyfriend was a Virgin before me and the last time i had any sexual intercourse with any other person is almost 2 years ago. I'm also 18 years old.

[Dolores81]

Good Morning Cianna, I'm so sorry to hear that, I've been suffering behcets symptoms for about 3 year's before i was diagnosed with behcets disease last year. The first thing they told me was that it was herpes, i knew it wasn't as i was in a relationship with my husband for over 11 years, then they said HIV, they basically keept going back to a sexual transmitted infection. My advice is take pictures and keep notes of how long these symptoms last, also any mouth ulcers, joint pain, blurry vission acne or skin leasion and headaches, basically any other symptoms that you wont necessary think it would be linked. Let the GP do there STI test abd any other test, they'll soon get bored of trying to figure out what could be wrong. Keep in mind that there's a gene called HLA51 that is associated to behcets disease, this could be done with a blood test. Also asked the GP to do blood test to see whst your inflammation level could be. I must let you know that not everyone that has behcets disease carries the HLA51 gene, this just helps you get diagnosed a lot faster if you have this gene. I hope i gave you enough advice, please do let me know how you get on.

P.s ask you GP to refer you to one if the Centre of Excellence they specialise in behcets disease and they are amazing.

[Ciannajustine in reply to Dolores81]

Hi Delores, So currently I'm waiting on lab results to come in at this point the ulcers can be coming from anything they came out once I found out it was a UTI so I've looked up BD and i'm not so sure that can be the cause i was wondering how BD works?

[gillianTS]

Hi Ciannajustine

I hope you have started to feel some relief from your symptoms.

Getting diagnosed with Behcet's is a very hard process unless you are fortunate to get sat in front of a specialist/Dr who is familiar with all the many symptoms associated with Behcet's.

Have a good think about your medical history, does any of the symptoms Dolores81 mention figure in your life, you will need to raise everything you have with the Dr for these to be considered. Read about the condition and get yourself familiar with how this affects people, what the symptoms associated are.

It took me several decades to get any sort of diagnosis, I was not aware a condition like Behcet's existed and neither did the consultant gynecologists, urologist, gastroenterologists, colorectal, oral and maxilliofacial, neurologist, otolaryngologists (took my tonsils out only 4 years ago thinking this was the cause and everything got a whole lot worse), orthopaedic, clinical dentistry etc and even a rheumatologist told me he had no idea why I got oral and genital ulcers and diagnosed me with Ehlers Danlos which has no association with ulcers he told me but what could it be, I have no idea... I got told to rest every 20 minutes! I have had camera's in every orifice including a camera through my tummy button looking for clues, I have received treatment for things that have never relieved the symptoms. And 12 months after being diagnosed with Ehlers Danlos I was then sat in front of another Rheumatologist who finally recognised Behcet's 🙂 but the only reason I was sat there was because I did my own research and discovered Behcet's then discussed it with my Dr/GP who dismissed me immediately telling me I had no eye issues... how did she know! Anyway what I had done prior to seeing her was do exactly what is being advised here on this forum and that was to keep records, take photographs regardless of how embarrassing this might feel, write about your past appointments with specialist, anything regardless of how insignificant you might feel this is.

Even after being accepted by rheumatology that it was highly likely I had been suffering from Behcet's you then continue to get the doubters, the ignorant specialists who have never heard of the condition and cannot look at this condition as a whole they just want to disown all other elements you are suffering with that do not fit into there field of expertise.

A recent appointment with clinical genetics about Ehlers Danlos when we discussed Behcet's the head consultant dismissed carrying out a HLA51 test on me because in his opinion less than 50% of Behcet's patients carried this gene and many people carried it who were not suffering from Behcet's...

The journey some of us have been on is staggering long so Ciannajustine if you can get yourself diagnosed at 18 that will be good you will start the journey of trying to get the right medications to help you through your life. Don't be fobbed off, don't expect anyone to send you anywhere you need to ask to be referred if this is not on offer, the majority of Dr/GP's in the UK and I suspect in many countries have no or little knowledge of Behcet's and this is the same for many hospital consultants too.

Good luck and let us know how you get on.

Gillian 🙂

[Ciannajustine in reply to gillianTS]

Hi Gillian thank you so much for your reply, how are things going for you now? And i have taken many pictures the whole thing improving a lot I'm just waiting back on my lab results had done so much research especially on BD but my symptoms are a lot different from it only thing that makes sense to it was the ulcers but they were never really too bad.

[gillianTS in reply to Ciannajustine]

Hi Ciannajustine

Do not discount your ulcers I have never had really really bad genital ones and my oral ulcers again no as bad as some people's but have had on a regular basis. As a Behcet's sufferer you would tend to find your body goes through flare ups, some people get ulcers others get joint, body, eye etc issues, for me the start of ulcers tends to be followed by my joints, muscles and general health and wellbeing. Strangely enough the oral ulcers now thar I am still trialling Azathioprine/ Imuran last longer are more deep seated as though they now get a swollen lump underneath them but I am blaming the fact my immune system is lower than usual.

I am still trialling Azathioprine as mentioned had a blip with bloods around 10 weeks ago ( white blood cells and neutrophils counts below normal range) got taken off Azathioprine for 5 days until bloods back to normal, suffered big flare up for me which lasted weeks, since then gone up from 75mg to 100mg having weekly bloods all within range and then increased to 125mg and 5 days later my bloods just scraped in to normal range so anxiously waiting the results from this morning's bloods to see how they have been in 12 days... at least I now know the rheumatologist will not take me off the drug providing my bloods come back ok but would want me to reduce by 25mg until things have settled and reviewed again 😊

I really don't want you to have Behcet's it's a very consuming condition that has a mind of it's own and for most we are scraping a lifetime together to try and be "normal" whatever that means for us now. I do get saddened frequently when I reflect on my old life, I loved sport and adventure never thinking about any kind of risk or taking any cautions and yet now I have to analyse where I go, what I can and cannot do, what footwear I have to put on, my ankles are horrid... I would love to go back to those care free day BUT I always always remind myself there are thousands and thousands of people around the world much worse than me, my situation is miniscule in comparison, so I make myself grateful for not having any of the conditions many many people live with daily without complaint.

Let us know how you get on, take care and make sure you get what you need to feel comfortable moving forward.

Gillian 🙂

[Expectthebest]

Hi Dianna. Did you get labs done on your urine? Are they certain UTI? Is this your first episode of vaginal ulcers? Any oral ulcers? You also will have blurry/foggy vision if your eyes are affected. If genital ulcers are your only symptom then start a journal with dates symptoms & pics. Is one knee swollen? Time will tell if you truly have BD. Hope you heal soon.

[Ciannajustine in reply to Expectthebest]

Hello there thank you for your reply, I did get lab tests done they said forsure it was a uti but still not sure what could have brought out the ulcers my results haven't came in yet they did a swab test once i went to the doctors the ulcers seem to look like a rash kinda not sure but I'm just patiently waiting for results.

[Expectthebest in reply to Ciannajustine]

Start a journal with dates, symptoms, pics, etc. Hoping you have better days soon