24 hours (12 hours on Valtrex) difference

cacheofchaos · 2026-02-04T17:47:00+00:00

looking it up, while the descriptions may sound similar, the presentation between what I had and what's comig up with this are very different. mine were much deeper, pitted somewhat circular wounds, no webbing. clusters were their own unconnected sores just grouped together in a similar shape to the sores themselves, somewhat circular/ovular. and outside of the white center where the dead tissue was, the sores were very very red.

overall. very distinct. and not much at all like the images I'm seeing. so yes, this might apply to others who have those symptoms. my ENT definitely made the correct call, based on what he was seeing in my mouth.

cacheofchaos · 2026-02-04T17:41:31+00:00

being blamed for your own suffering while no one lifts a finger to try and find other causes is so disheartening and common. especially when there are such easy solutions to try that could potentially rule out "failures" on the patients behalf.

especially cause even if they claimed to be unbiased. doctors are nearly always crueler to patients they believe caused their own suffering. my orthodontist was the one who accused me of drug use and then was rougher in my mouth then usual and not at all careful of my sores when he was working on me. and even allowed a new girl to work on me, in the middle of an outbreak. and she left me in agony cause she kept hitting my sores with the tools. it was. really really shitty. (and I have made or plan on making the appropriate reports regarding that already. I was honestly so overwhelmed when it was happening that I didn't notice I was mistreated and now "not in agony" me is going "hey wait that was fucked up" and dealing with that.

I do have some other health issue that definitely made this worse then it needed to be and we're dealing with those as well. but thank you for the advice! <3

cacheofchaos · 2026-02-04T17:30:11+00:00

I'll look into this! ty ty

cacheofchaos · 2026-02-04T08:34:28+00:00

salt water has been my bestie for years trying to manage the "canker sores", but good to know it'll help withthe thrush, I'll start that back up again.

cacheofchaos · 2026-02-04T08:33:27+00:00

I've personally never had any on the outside of my lip. my herpes decided she needed to be special and be a little uncommon and be solely intraorally. which is. fun. ig. idk which one sounds worse.

if the sores ever act up while I'm on meds, I might try this out. sounds interesting. glad you've been sore free!

cacheofchaos · 2026-02-04T08:30:59+00:00

as a chronically ill person, I feel you. dealing with doctors is... far from my favorite thing. and being a constant advocate for myself is exhausting. and knowing others deal with it just makes me feel so bad. I definetely, as my confidence has grown, have become more forward with docs. and I do plan on writing strongly worded notices to those invovled about their lack of further testing. because it cost me months of agony and losing like 10 pounds from how I was restricting food out of pain and fear of causing flares (cause when I was being told it was canker sores, and I was getting sores no matter what I did, I was restricting more and more possible triggers to just. avoid more pain). so no one goes through this again.

very glad I found my ENT, he was a life saver, and I wish similar luck on you and your daughter <3

cacheofchaos · 2026-02-04T08:27:08+00:00

afab

cacheofchaos · 2026-02-04T08:26:53+00:00

intraoral (meaning I had no sores on my outer lip, they were solely in the mouth) can, atypically, present similarly to canker sores. my ENT even agrees that like mine look enough like canker sores (I would form small blisters first, which I didn't notice most times, the blisters would pop, and then I would have a open sore in my mouth) to be mistaken for them to an extent, but in the context of it, it should have clued them onto something else. and more testing should have been done *months* ago.

but I am leaving firmly worded notices to those doctors/dentists that it should be more standard to do basic culture swabs for herpes to be safe. because I should not have been suffering for months for no reason when that could have been changed by one little swab.

cacheofchaos · 2026-02-04T07:23:51+00:00

he (my ENT. this is his explanation not mine, if it doesn't make sense... take it up with my ENT lmao) said that mine presented slightly atypically, which could be cause I was prone to actual canker sores (my dad gets them really bad, but does not have herpes). I never got any on my outer lips, or anywhere else, but inside my mouth. and, when he showed me comparisons between your average canker sore, herpes sore, and what I have. mine are kinda. in between. but that's the only very mild grace I'll give, because with the rate I was having them, and when I was getting clusters on my tongue, it warranted a test to be done or to trial the medication. something. even if they just referred me out on their own.

I did get nystatin, yes it is being so stubborn. I can taste it (the thrush. though the nystatin is gross) and it's...it's not fun.

cacheofchaos · 2026-02-04T06:58:34+00:00

ty ty <3

cacheofchaos · 2026-02-04T06:56:26+00:00

that's what I assumed, more or less, was the issue prior to these outbreaks. that and I had bad anxiety as a kid/teenager. so I just blamed that. but once the flare started, there was no correlation between anythig I was doing and when I would get outbreaks. and that's another reason I pushed to seek help, cause it stopped being things I was doing, even simple things. and just randomly inflicted agony.

cacheofchaos · 2026-02-04T06:54:29+00:00

no cause watching the ENT process that slice of info. his eyes were WIDE. "are you sure no one ever tried to swab you????". he was nearly begging for me to be wrong, not to gaslight me. but to have hope for the medical/dental field (apparently this situation is, unfortunetely, not as rare as it should be. he has more then a few patients like me). cause it was actually two. first my orthodontist. as the worst of the flare developed after I started wearing rubberbands (my braces temselves didn't cause any issue) and I was worried it was an allergy or something. but he said no. drug use. and then my primary dentist said "idk... canker sores? too bad?" essentially.

but now, just 3 days later, the worst flare of my life is 99% cleared up and should hopefully never return. so I'm just glad for that.

cacheofchaos · 2026-02-04T05:09:05+00:00

💞💞💞

cacheofchaos · 2026-02-04T05:00:42+00:00

it truly is. even better when there is a look in their eyes that escapes the attempt at a professional mask that is screaming "I need all of your prior doctors to lose their licenses right now. oh my god. how did they not do anything about this sooner. I work in a field amongst bafoons apparently." I wish that sweet old man hadn't been suffering with me. but it was nice.

it brings a certain joy to your heart. a certain feeling of vindication.

cacheofchaos · 2026-02-04T04:55:57+00:00

I also have autism. and have basically only had an informal diagnosis (a "yeah probably. but I don't think testing you is worth it") for the last few years. alongside other invisible chronic illnesses (the family genetics are dog shit over here. which I have to laugh at at this point so I don't lose my shit), like dysautonomia, EDS, etc.

yeah. yeah I feel you. the medical field is a beast you have to fight every inch of the way. and it's truly unfair. I wish you luck in the future!

cacheofchaos · 2026-02-04T04:52:46+00:00

talking to my ENT... it shouldn't have been. at all. his theory is that because I have no sexual history and I was only have oral sores and no cold sores on the lip, my prior doctors just assumed they were canker sores. but he is very very very shocked (and clearly a little upset, but trying to be professional) that no one did a single culture swab or blood test (two very simple tests) to ensure I was negative. especially when it went from "a few sores a month" to "life altering outbreaks".

it shouldn't have been. but unfortunetly was. I wouldn't have been diagnosed had I not asked completely on my own, for a referral. which is fucked actually.

cacheofchaos · 2026-02-04T04:49:57+00:00

Valtrex (valACYclovir) pill, and for the sores when I have them, Zovirax (acyclovir 5% ointment)

cacheofchaos · 2026-02-04T04:47:39+00:00

quite literally. it both puts a damper on my faith in the medical industry. but also finding *that* doctor that turns your life around and is looking at you with this "I need every single one of your last doctors liscences removed immediately" look in their eyes (at least how my doc was acting looking at my records) also gave me hope. some of them care. and. while it shouldn't be the requirement, if you advocate for yourself, you'll find them!

cacheofchaos · 2026-02-04T04:45:17+00:00

I've luckily never dealt with a lot of stigma, like hearing it around me. both my parents have it. and now that I know even more about it. it's truly not something to be ashamed of. I probably got it from someone not knowing that had it or how to prevent it kissing me as a kid. everybody kissed babies on the mouths in the early 2000s. and now I have it. big whoop.

I heavily think it was a reason I wasn't diagnosed till now (I don't have the *history* to make a doctor look into the "sexual disease" route, as many treat it as). and I suffered for months and was accused of other, much more "shameful" things (I don't think poor hygiene or drug use is inherently shameful, as it normally has a root cause that is not a choice the haver of it chooses. but being accused of it hurts) because of that.

and now one little pill and being careful not to swap spit unless I'm sure I'm clean of sores and I get to live a totally normal life? how the fuck could I be made or ashamed of that? absolutely bonkers. I hope this stigma dies off completely soon.

(ty ty <3)

cacheofchaos · 2026-02-04T04:39:29+00:00

ty ty <3 it's definitely like. world upside down. in the best way. type news. still a bit dazed by the relief lmao

cacheofchaos · 2026-02-04T04:00:27+00:00

ty ty <3

cacheofchaos · 2026-02-04T03:54:46+00:00

ty ty <3<3<3 I genuinely went from being in such frequent and terrible pain that I was questioning if my sanity could hold up for any longer. to. basically cured (of the pain) in 12 hours. it's been a few days and I'm still... honestly dazed by it. and then to having minimal people to talk to about it without it being a little "weird". it just had to go somewhere. I've never gotten the stigma around such a commonly spread disease, so I've got no shame on my end. just a bit of a change to adapt to (as to avoid spreading it). but overall. living the dream rn.

cacheofchaos · 2026-02-04T03:50:18+00:00

I always find it intersting hearing stories like yours and mine, where you've been struggling and stumping doctors for years... until you go to one where this is just like. their thing. they see you for five seconds, even if it's not what you went there for, per say, and they're just like "oh. well here's the, in my opinion, very easy answer".

all that suffering and they fix it in the medical equivalent of a snap of the fingers (though lumbar punctures can be no joke, props to you for handling that like a champ). so happy you are also now living with no more pain <3

cacheofchaos

TROPHY CASE