possible Behcet's Disease?: Hello, As my title... - Behçet's UK

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possible Behcet's Disease?

sarahgrace28 profile image
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Hello,

As my title might entail, I haven't been officially diagnosed with behcet's syndrome. I came here for some serious advice, because people are so quick to jump on the herpes bandwagon. I actually have been looked at by a nurse practitioner (zero tests performed) and told I have herpes. I'll try and summarize this story as quickly as I can because it is quite a lot.

I'm 22, and around 3 years ago, I got my first ever boil on my inner thigh. It hurt sooo bad and took forever to finally come to a head and pop. It was a pretty bad experience; I remember I could barely walk. When it finally popped, blood and pus came out and it left a pretty big scar. Ever since then, I have been suffereing from this skin condition, and just recently, I've started feeling a new boil coming on just about every week. most of them aren't that bad and go away on their own in the thigh/butt area. Some sore boil like spots come up on my legs and arms.

What's weird is for about the past 3 years, I've had just about every skin condition you can imagine. Rashes, scabes like bumps that no doctor could figure out, bad acne flares, etc.

Probably for the past 4 years or so, I've been developing painful ulcers in my mouth. If I go a month with zero ulcers I'm singing praises. Some aren't bad, but the main place to get them are on my tongue. they start as little painful bumps and turn into ulcers. I've had up to 6 in my mouth at one time. Some are HUGE and i'm pretty sure they scarred my mouth. Some cases I could barely eat or talk and was shoving oragel in my mouth every 10 minutes. My mom suffers from ulcers but not as bad as me. People are flabbergasted when I tell them how many I can have in my mouth at one time.

Around 5 weeks ago, I had sex with a new partner that I barely knew. It was extremely dumb because I normally don't do that type of thing, and BOY do I regret the decision now, because 2 DAYS after having sex with this guy (with a condom that broke near the end on accident), I noticed my labia was swollen. I got a hand mirror and realized that I had 3 tiny ulcers on my labia. I freaked out immediately thinking it was herpes. Mind you, that same weekend I had sex with him, my immune system was probably the lowest it's been in years because I got a total of like 6 hours of sleep the entire weekend (when that happens, I break out in oral ulcers/boils, etc). As I predicted, along with the genital ulcers, I developed mouth ulcers and a random boil came up on my leg.

I went to a health department and saw a nurse practitioner (I have no insurance), and she immediately thought it was herpes but performed no tests because the heath department where I live cant afford herpes or HPV tests. I still haven't gotten tested because to go to a clinic and just have the test will easily be $120+ (I've called and asked). The sores got soooo painful I could barely walk or pee. She prescribed me an anti-viral but I honestly don't know if it helped. It was a week from that moment before I could pee properly again, and another week before they were fully healed. They left pretty bad scars on my vagina though (read that most herpes doesn't), and they never crusted over. Just disappeared.

It's been 5 weeks since then, and I had finally gotten to where I wasn't thinking about my possible herpes diagnosis and was just enjoying life again, when BAM. All of a sudden, I woke up with rather large cystic type pimple on my cheek. The pimple grew to the size of a quarter by the next day and hurt like hell, literally throbbed. I was almost convinced it was a boil because it was so tender like a boil and hot to the touch. Today it's a tiny bit better but still around the same size, my cheeks just aren't as inflamed as they were. I've been applying hot compresses, drawing salve, everything trying to make it come to a head but nothing works. It's pretty prominent sticking up off my face, so I had already decided I was gonna cancel plans for this weekend.

Around that same time, I developed 3 mouth ulcers. One has become pretty large and is bothersome. The others are small but still painful.

I don't know what made me think to look down there last night... something just did. But, I got a mirror. And behold, I saw a tiny brown scab looking thing on the inside of my labia/vaginal opening. I kind of freaked at first becuase I'm traumatized ever since that awful experience I had. But I felt of it and it was like a literal tiny brown, raised scab...not an ulcer. I was confused but it did look like my labia was starting to swell. well, today it has turned into one single ulcer, which is weird because I thought herpes started as little fluid-filled bumps. It wasn't typical of a herpes lesion at all. It also was on the complete opposite side of my vagina. The last flare up was ALL on the right side of my vagina, this one was on the left.

If herpes is what I have then I truly pray that this outbreak is MUCH milder, but something is telling me that's not what it is... I've read so much on behcet's and I can relate SOOOO much. How common is it for all of these symptoms to come at once? I literally feel like my immune system is attacking itself. I'm a pretty healthy person otherwise but this has been plaguing me for a while now. I have no joint pain or eye problems, other than my eyes getting red/irritated easily. I just don't know what else this could be. Every time I search my symptoms in google it pulls up behcet's.

Any advice? :((

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4 Replies
Jaxxi profile image
Jaxxi

Hi. Poor you. Sounds very uncomfortable :(

Currently there is no definitive test for Behçets so a diagnosis really does depend on eliminating other possibilities.

I'm at a loss as to how you can get the necessary tests done under your healthcare system, if you have no insurance and no money to spare. We are so lucky here in Britain. If I were in your position I think I would try and beg, borrow or steal the money for a herpes test! If that turns out to be negative, it will at least indicate to health professionals that they are dealing with something other than the obvious. And clearly you need to know yourself whether you have herpes or not.

It's impossible to say whether your ulcers and skin lesions are Behçet's as it is so varied in the way it shows up in different people. But in answer to your question about getting lots of things at once, then yes, Behçets features a pattern of flares when symptoms increase in number and severity.

It would be good if you could take clear dated pictures of your ulcers, rashes and lesions and keep a symptom diary (including things that might seem minor, like irritated eyes, tiredness, headaches or tummy upsets) so that whoever you see about it in future can get an instant overview of how you are being affected.

Good luck x

rooser1 profile image
rooser1

Are you in America? I am too. herpes and ulcers take on a very different appearance and i too, was diagnosed with herpes many times even though i had six tests come back negative over two years and in a 12 year monogamous relationship. since money is an issue- here's what you can do for now to help get your body back to a decent state until you can figure out a more consistent medical plan. some insights first-

1- there's no test for bd. it's diagnosed off symptoms. main ones being oral and genital ulcers. take care to monitor your eyes as it sounds like they are inflamed due to the redness and easily irritated factor.

2-most flares are brought on by times of stress. lack of sleep (you've said it yourself-6hours) can for sure bring out issues VERY quickly.

3-poor diet. cut all sugar and processed food right the f*ck now. this was ultimately my turning point and i saw/felt a difference in 10 days. i was on 15 diff meds, ulcers everywhere, infection after infection- and then i went sugar free/carb free (it's actually the candida diet...keto works too-google it). this is what helped me the most. it's also a very viable and CHEAP option, not to mention the most effective. eat meat, fats and veggies. literally. that is it. sounds so simple. it is. drink water. drink 8oz every 2-4 hours. this is important.

4-be your own advocate. fight for tests and challenge herpes diagnosis.

tl;dr: you're broke. Eat very well and sleep and you'll definitely be on the up and up.

UKADMIN profile image
UKADMINPartnerBehcet's Syndrome Society

sarahgrace25, so sorry to read that you are going through so much and wish you all the best. We suggest you might like to read the Overview on Behcet's and if you think it might explain your symptoms, then take the information along to a doctors to talk about it. The other thing is, you could try contacting the American Behcet's Association ABDA behcets.com/site/c.8oIJJRPs...

behcets.org.uk/wp-content/u...

ColdNoodleSoup profile image
ColdNoodleSoup

I can't imagine how terrifying life must be without access to medical care. I'm so sorry.

Could you go to a Planned Parenthood for a cheaper, or free, herpes test? While this definitely sounds like it could be Behcets, an important step is ruling out more common afflictions. Maybe a PP doc would have tips on how to get further medical care?

I am NOT a medical professional. But I did read an article about another autoimmune disease that causes boils. Hidradenitis suppurativa. Might be worth a Google... Though obviously what you need isn't Google - it's a doctor!

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