Confused...?

[Camp1997]

Hey guys, so after the past week or so I’ve been having a very rough journey. It all began with SEVERE abdominal pain/swelling of the bowel, diarrhea with some blood and lots of pain. I literally thought I was dying, went to the doctor got given sulpher. Tuesday I notice canker like sores right near the vaginal opening, and my good lord does it hurt. I can’t walk normal, sit normal, and peeing.... I scream everytime. Go into the doctor and he made a weird sound and said well, doesn’t quite look like herpes but it might be.. here’s some pills to treat herpes, took a swab and sent me for blood work.. I left mortified. Googled 8000000 pictures of herpes not a one looks anything like it. No other herpes symptoms either. Went back again today, “weird, it’s looks like canker sores” and gave me numbing cream and some pain killers and I’m to continue on the herpes meds until my blood work comes back.. now I’m here. I’ve been googling like crazy and everything I’ve seen/read makes me believe/connect with Behcet’s. Now of course I’m not certain but I’m darn certain it is not herpes!!! I have had smaller genital ulcers like this before- they went away on their own but these ones I have this time are deep and so sore! I also have canker sores at least every two weeks. With multiple at a time.

What do you guys think?

[Expectthebest]

I was really ill with severe ulcers in my intestines initially. A course of High dose steroids should clear both issues . Ask your physician-it's worth trying

[lovenothate]

Hi, thought I’d mention that my Behçets started with bloody diarrhoea and pain and it turned out it was due to ulcers in my bowel. The best advice I can give you is to TAKE PICTURES of your current sores... you’ll be glad you did later. The problem with getting a diagnosis can be that not all symptoms appear at the same time, so you need evidence that you had these ulcers down below. And keep a diary of onset of symptoms and what symptoms happened when. Watch out for any unusual skin rashes, pains, anything out of the ordinary. Good luck, all the best, Will 😃

[TheHud in reply to lovenothate]

Take pictures, essential. I did not and it was a big mistake because now I am older and its all moved on to different symptoms I am probably not going to get a diagnosis. No matter what the Behcet's Society says about diagnosis, especially ulcers and types, the centres have their own rules and they are very specific about only one type, that looks a certain way. I imagine the same will apply to different specialists wherever you are.

I have looked at thousands of BD style skin, mouth and genital ulcers and rashes etc now and even though I know I fit, based on all those others around the world with a diagnosis (inc eye, neurological problems etc) I will still not be exactly right.

Maybe I am just too old

However, steroid cream is the only answer

XX

[Camp1997 in reply to TheHud]

I have taken lots of pictures!! Right now I can’t even sleep through the night these ulcers are so bad. Is that normal!?

[TheHud in reply to Camp1997]

Mine were truly terrible before the meno. I would sleep with crushed ice in a plastic bag, wrapped in a soft cloth, held in place by my pants. Like you, mine were all peri and vaginal area. I was in so much agony for so many years i would not even have a smear. I tried to tell my GP and got HRT because the meno started early at 43 and it helped a bit. Eventually a lady GP gave me an exam and sent me to gynae who got completely the wrong end of the stick so to speak and so i refused to go back. They were just going on about womb biopsies. I was in too much pain to be messed about with and knew what that kind of messing would do. So I never took pictures, hid it, but I did have steroid cream for my skin and because my mouth was also a mess, one day I discovered the cream worked on my mouth and it also worked on my bits and bobs. The ice was still required.

So try ice at night Lidicaine was way to painful for me and made everything far worse in the long run. Vagisil helps a bit when not flaring. I am now diagnosed with vulvodynia etc and only use a soap free wash, everything free and that also helps. But the big outbreaks are over, they eased post meno, unfortunately the after effects remain

xxxx

[Brichel]

Definitely sounds like Bechet's. I went through the same thing with my family doctor until get this, my lung specialist told me it was probably Bechet's. The blood test that confirmed it for me is called HLA-B51 Determination. May take lab a bit to figure out how to take blood sample as it's rare they are asked to do this draw. I use Calmoseptine for the ulcers or any product for baby's diaper rash. It doesn't really heal them but coats them so you can see without screaming. Wishing you the best. Find a rheumatologist and bring information about Bechet's with you. If you live in the U.S. it's rare and we don't have many doctors who can diagnose it. You have to be your own advocate

[2106]

Hi I had the same thing. My first vaginal ulcers were when I was 15. The trouble is they are so deep it takes years for them to heal and then they leave an indentation which is then weak. I was tested for Herpes so many times it was embarrassing. I am 57 now and was only diagnosed 7 years ago when I had yet another bout of ulcers. I use Trimovate Cream which is a steroid. Use sparingly but very effective. Also don’t use any soap or shower gels this only aggravates them. My consultant also advised don’t dry them with a towel use a hairdryer. May sound crazy but does work. Do keep pictures and a book of symptoms what you eat sleep pattern etc it really does help. All the best xx

[rooser1]

BD get diagnosed off major and minor symptoms... do you currently have oral ulcers now too? Uveitis?

[Camp1997 in reply to rooser1]

I have about 4 oral ulcers, can hardly stay awake and extremely sore

[rooser1 in reply to Camp1997]

Yah BD can be diagnosed off having a number of major and minor symptoms. For me, having oral and genital ulcers. The other major symptom is uveitis, which I do not have. Minor symptoms would include but not limited to: arthritis, skin lesions, a positive pathergy test, erythema nodosum etc everyone is really different and has varying degrees of symptoms.

behcets.com/site/c.8oIJJRPs...

[rooser1]

There are s few other issues that can cause vaginal ulcers, crohns, Ulcerative colitis... all easily ruled out with a blood test. Behcets does not have a blood test but is diagnosed off a culmination of symptoms and response to medication.

In the meantime.... drink 250mL of water every hour on the hour. If you dilute your urine enough, it makes it bearable. Sleep as much as you can.