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.