Help and advice needed

I'm so glad I found a forum that has real live people with Bechets! Argh! I'm at my wits end, so I'm hoping some of you guys can help me out please. Please bear with me while I explain my REALLY long story..

Ill try to cut my LONG story as short as possible. I am convinced I contracted herpes (both vaginally and orally) about 2 years ago from a one off encounter. I came down with horrible symptoms 10 days afterwards, including a lot of discharge, huge swelling, itching and vaginal tears, along with a fever, feeling sick and cold sweats, which all lasted about a week. I saw a doctor on day one of symptoms and a swab confirmed thrush, but couldn't get to a doctor a few days later, for many reasons, when the cuts came, so couldn't get the open cuts swabbed to confirm herpes. Weeks later the base of my spine burnt, and my thighs felt like they were on fire, along with swollen aching groin lymph nodes. Then my throat glands became massively swollen, with a terrible sore throat - the worst ever. Since then I have this recurring on a nealry bi-weekly basis - for 2 years.

Now, here's where I need some help, as I am hoping some of you will have been investigated for herpes too, due to the similar symptoms. I have had three different blood tests, which all showed I am negative for herpes 1 and 2. I have managed to get a swab done on one very tiny cut on the fold of my vulva which came back negative, although I was told the likelihood of getting a true positive from such as small cut was unlikey anyway cause it's hard to catch. So basically, the doctors are confident that I did not contract herpes, and are now thinking it may be behcets.

However, can you appreciate why I am not convinced about this? I develop severe symptoms 10 days after a sexual encounter - that are still recurring now - that's not a coincidence to me.

My main symptoms are as follows and I'd really appreciate it if any of your guys could let me know if any of this fits with bechets. I am spending an absolute fortune going to private doctors now, so want to know the right questions to ask etc as I try to move this forward. Every day of this mental torture for 2 years is taking its toll on my life...

Swollen lymph nodes in groin (mainly right) which come and go but are VERY troublesome, achey and burning

Heavy swollen feeling around vagina and inside like a balloon has been blown up

Vaginal itching (although I do have recurring thrush now as well, so the thrush may be the cause of that - or of course it could be herpes!)

today I noticed the veins are large and swollen with that heavy feeling at top of inner thighs and around vagina

Fissures and cuts along folds of vulva

Polyps growing in vagina (biposy confirmed benign growths)

Burning tingling lips - that once resembled a mild cold sore but it more often develops like small thin blisters all along the inner edge of bottom lip which leads to sever peeling and ulcering

Burning sensation on skin, especially base of spine, down backs of thighs and front of shins, also on mid back. Feels like an icey hot burn - like sunburn - drives me insane!!!

A few times in the first year my right eye become red on the white part and felt burning (I managed to get to an optician but only after it had gone away and said my eye looked healthy)

A few weeks ago I got blisters on my fingers and toes

I get burning sensation on my buttocks and spots (which I'm told don't resemble herpes and are wide spread and look more like folliculitis)

I still believe I have herpes and I'm just one of those few people who never test accurately in bloods for it, and it's just a matter of time until I catch it. However my doctors are getting angry with me and repeatedly say the bloods are accurate (but I have read about numerous people who have had false negative bloods) and that I'm starting to go insane with it all (want me on anti-depressants - no thanks!) and have strongly suggested that I start looking at other diagnoses, which have include lichen orginally and now behcets. So that's why I'm here....

ANY help would be MUCH appreciated.I just want to stop hitting dead ends.

14 Replies

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  • Hi so sorry for the pain you are experiencing and the lack do diagnosis. I understand where

    you are coming from as it took me 12 years to get my BD diagnosis and to this day, 15 years on some docs are still undecided. There are no real tests for BD it is more a cluster of certain symptoms within a certain period. I like you have had and still occasionally have blood test etc which always come back negative, I have just had a brain scan for certain symptoms but again no problems found,,,thank God. You sound like me, I have to find an answer and I won't stop until I do but sometimes life and health doesn't work like that and we have to learn to accept that is is not always black and white. From the vaginal symptoms you are experiencing it does not seem like BD ulcers but the best advice I can offer is for you to get a referral to one of the Centre of Excellence either in Liverpool, Birmingham or London. I feel that in your case this would most definitely be the the best chance of you getting or ruling out certain possibilities, this assuming you are in the UK. Speak to your GP about a referral and take it from there. I wish you the best of luck and stay strong and go with your instincts. This is a good site with lots of friendly, helpful people but remember you must take things into your own hands and don't read too much into all that you read.

    Hugs and Smiles

    Billi

  • Starting in '95 or '96 I had a lot of the symptoms you described, especially the consistent mouth ulcers, tingling burning lips, and the petechia (red broken vessels) in the eyes. I've had several different types of cultures done for Herpes and they always came back negative.

    As time went on more and more strange symptoms manifested. Joint pains, extreme fatigue, consistent UTIs, vaginal lesions and itching, blisters on my hands, double visions, loss of vision, consistent different types of skin rashes, some quite severe, broken and swollen veins. At the time doctors, especially where I lived, were ignorant of Behcet's, even the Rheumy docs.

    Since no doctor could tell me what was going on, I started doing my own research. When I realized that all my symptoms related to Behcet's I joined the American Behcet's Association, which has been very helpful. I was told to journal al my symptoms and take pictures of the lesions and ulcers and take them to my doctors, along with the info on Behcet's.

    I had to go to many, many doctors, always showing them my journal and the photos, until I finally found a knowledgeable Rheumy who worked with Behcets patients. I was finally diagnosed a year and half ago, after more than 16 years.

    The Rheumy doc I have now is very thorough and is now testing me for Lupus also. So many of the autoimmune diseases can mimic each other, and you can also have more than one autoimmune disease.

    Hope you can find a good Rheumatologist who knows a LOT about Behcet's. He/she may refer you to other specialists to help confirm what you have. I see 7 different doctors: Rheumy, Orthopedic doc, Dermatologist, Ophthalmologist, family doc, Neurologist, and Psych doc. As Behcet's affects every part of your body most symptoms need to be treated individually. And, autoimmune diseases can, and often do, manifest symptoms of depression, sometimes severe.

    You mentioned that after a sexual encounter you would have a flare. I read that a sexual encounter without protection can trigger a Behcet's flare. Same happened with me.

    I wish you much luck and hope you find a knowledgeable doctor. Don't give up. Do a lot of your own research and when you find something new that's been discovered about Behcet's (or whatever you suspect you have) print it out and take it to your doc! Hang in there.

    There are medications that can relieve your pain and help reduce the flares!

  • Forgot to mention: I've never had the vaginal skin tears that you mentioned. There are other autoimmune conditions that do involve this. Lupus is one. Lupus has a lot of the same symptoms as Behcet's, such as the mouth ulcers, skin lesions, petechia and many other symptoms. My sister has Lupus and a lot of our symptoms are so much alike.

  • I was diagnosed with BD 3 years ago and when I have bad flares I always get the vaginal tears! :-(

  • Thank you for taking the time to reply. I really appreciate it. It's so nice to be able to finally 'talk' to someone about all of this. I do already have a couple of autoimmune conditions, which is why one doctor is, in my opinion, a bit too quick just to jump on the bandwagon and label me with another one. Interesting to know that intercourse can trigger a flare. Has this happened to anyone else? Although I know you are saying that the vaginal tears aren't a symptom of Behcets. I'm wondering if anyone know if a severe yeast infection can be a trigger for the onset of Behcets? As that's my only reasoning now, if it truly isn't herpes (which you know I doubt). Also, when symptoms are present with Behcets, do they have an onset, run its course and then go, for example over a week. Or can they wax and wane every day? This baffles me, regardless if it's herpes, behcets or something else, because at night I can be terrible, but the morning brings relieft, but by the afternoon the swollen glands and burning skin, its back again. Interested to hear others' opinions and stories to try and shed some light on all of this and start making some sense of it all. Thanks again.

  • Hi Deadends

    This type of question comes up quite often as so many of us have been diagnosed wrongly or suspected of having herpes before.

    You can have false negatives for herpes but it does seem that you Dr's are convinced that it maybe something else such as behcets and your symptoms seem to fit that diagnosis.

    The fluctuating symptoms where you can feel o.kish one minute and then feel rough the next is something that a lot of us have to deal with. This makes it difficult to plan things and also convince some Dr's and people that we have a genuine illness.

    If you type the word "herpes" in the search bar up on the right hand side, you will see lots of discussions about this and how herpes is one of the conditions that can be confused with behcets.

    It may have been co-incidence that it happened after a sexual encounter, but it could have been brewing up for sometime leading up to this.

    Many years ago I had a really good immunologist do a 7 page medical history and at the time I thought a back injury had triggered my symptoms. But when he delved more into it, I realised I was having symptoms [albeit not obvious at that time] even when I was younger.

    For instance as a child I'd had what was diagnosed as Tonsilitis [ulcers in mouth and throat with aching limbs etc] every fortnight and no amount of anti-biotics would help. I also was diagnosed with herpes when I was a teenager, where the viral drugs that were given didn't help. Then it was diagnosis of severe thrush/yeast infections which treatment didn't help either.

    It wasn't until this immunologist did my medicial history [many years later] that suddenly this became clear that these episodes were probably early signs of behcets.

    So it just goes to show how this condition can manifest and not be obvious in the beginning.

    I hope this makes some sense to you and in a way you are probably lucky that your Dr's are not just writing your symptoms off as herpes etc. If it is behcets, the sooner you get treatment the better.

    The Centres of Excellence would be the best place to be assessed for this but the Behcets Society also have a list of other consultants that are experienced in diagnosing Behcets.

    I hope you find you answers soon

    Andrea

  • Oh god andrea thank you so much. I've been crying all afternoon and your post lifted my spirits a little. It means a lot to know someone is taking the time, and cares! I've been back to my doc today as my groin glands and burning sensation in by bum and legs are just terrible. I have thrush again - it never goes away! And the long cracks/cuts along the folds of my vulva are healing but the whole area feels very pressurised and tingly and burny. And I'm starting to get another raw blistery patch on my lower lip. I am still pretty sure I have herpes. This Doc says she doesn't think it's Behcets but something to keep in mind. However, I got bloods taken to check my immunity. Do you have any idea what this will show/mean? So far all I know for definite is that i get thrush and can't imagine that it will cause vulva cuts, swollen glands, burning skin sensation and feeling of being unwell. So something else must be going on. Does Behcets cause swollen glands? And burning skin sensation?

  • Are all your symptoms localised to the genital area except cold sores? If so, to me, Behcet's seems u likely as it is multisystem causing joint issues, fatigue, gastro symptoms, migraine etc. I wish you all the best in getting sorted. Can you go to a GUM clinic for help. X

  • Hi thanks for your comment. Been to a GUM clinic many times, problem is I never have fluid filled blisters to swab to get a diagnosis of herpes or not. At least then if that was positive then the guessing game would be over, and if negative I'd be looking more towards the behcets etc route. The long cuts in the folds are just open, like they've been ripped apart due to fragile skin, but not a lot of fluid to catch. But tingles and burns. But the groin node swelling and pain comes with the sun burn feeling, regardless if there are lesions or not. My 'body' symptoms include skin burning sensation down both legs and on my back and flushed face. It drives me insane. I've had small blisters on my fingers and toes, both sides, and my lower lip sort of ulcerates regulalry with small spots and cuts and peel. Sometimes I feel this comes on after eating and my mouth can feel generally swollen inside. I also get spots on my bum and right shin that are burny, but look like folliculitis rather than blisters, but certainly 'feel' more severe than that. I had chest/respiratory problems with it at the start but don't really get that any more. And the eye redness and burning only happened a few times. Other things such as fatigue, gastro etc I already have due to another condition so can't really take those in to considerations as they are not new. There is definitely something going on. Some symptoms suggest herpes, some suggest not. Just trying to gather personal experiences from those familiar with it all, to try and put some pieces together. Going to see a gyno in a few weeks, so hoping to have a list of questions to ask and perhaps a plan put in place to finally put all this to bed, which is why I'm researching now. Over 2 years now of nearly daily symptoms, worry and uncertainty of not knowing if I'm infectious to others or not. I'm sure you can appreciate how tired I am of it all.

  • Hi, I have been experiencing exactly the same feelings.It was my second visit to the GUM clinic that they suggested if the test came back negative behcets would be something to consider as I had been experiencing inflamation in my ankles. I have now visited two specialist who are convinced it is bechets on looking at my health history although my bloodwork on the whole is normal. With mild symptoms in comparison with other personal stories I find it difficult to comprehend it is behcets and not something such as herpes and I myself struggle with the concept of passing it on. I have been greeted with support from my dr's who have been a great comfort in telling me that with all my other symptoms herpes is unlikely although I still have some doubt in my mind.i am receiving treatment and it has been a massive help although I am enduring a flare up at the moment which has just come out of nowhere having been well for a good few months . I hope everything gets resolved for you.good luck!

  • Hi wednesday1, I'm so glad there is someone else like me! What symptoms are you having? Why do you think it's herpes? When and how did it start? Would love to hear your story and talk things through. This is really hard on your own!

  • HI Deadends,

    So sorry to hear about all the pain and confusion you are going through. You have said that the doctors are now thinking it might be Behcet's, but you haven't been diagnosed? Why not ask your GP for a referral to one of the centres of excellence then. I think it would be a great place to start. The sooner you get a diagnosis, the better. You can be assessed by specialist clinicians, and if it is in fact Behcet's you can begin treatment to help control your symptoms. The sooner you get the right diagnosis, the better for you. If you'd like to message me with your details, I would be very happy to explain the referral procedure. Also, if you look at the homepage, it has details of the clinics and consultants of each of our centres in England.

    Take care,

    jean

  • Hello,

    Do you notice it more around your menstral cycle? I do, similar symtoms as you. Itching and swollen. Constant thrush. Soemtimes every month. I have Behcets so sounds like you may have. Try to think back to any unusal illnesses or unexplained things in yuor life too as this can help with diagnosis. do you get the mouth ulcers too?

  • I know that this post is from 3 years ago but this is the first time i'm finding someone who literally has all of my symptoms with no diagnosis. Did you EVER find out the cause? Herpes or autoimmune diseases? I am at a complete loss and with ends with my body this has been going on for a year and a half and has gotten so much worse over the last three months.

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