Mouth ulcers that might be cold sores, genital herpes... I'm scared
Posted , 4 users are following.
Hey
Sorry in advance for the essay. I've come here for a bit of help and support - I hope someone can advise me a little.
About a month ago I started having symptoms of genital herpes - sores popped up, I was in a great deal of discomfort and took myself straight to a GUM clinic. I was prescribed Aciclovir, had a full screen and swabs taken. Everything else came back negative.
They did not do a blood test for herpes for some absolutely ridiculous reason, and lost my swab results. Feeling scared and at a loss, I went back a couple of weeks later. They checked me over, said the sores were gone and sent me on my way.
Realising the impact this was starting to have on my mental health (I already suffer from anxiety), I decided to take the tablets as suppressants until I came to terms with what was happening to me.
About a week ago, I started getting tingling on my lips and around my mouth. I then had the worst outbreak of mouth ulcers I have ever experienced. I'm naturally prone to them, but this wasn't like anything I've experienced before.
I went to the doctor, had a little cry, and he took a blood test and a swab of my mouth. He also advised I up the dosage of my antivirals which I have done.
Has anyone had coldsores inside their mouth, especially after taking suppressants? I'm now worried about all kinds of things, and am feeling very alone and afraid.
Thank you for reading 
0 likes, 13 replies
jane80952 ilg02
Posted
Yes you can have type 2 in your mouth. Dentists see it frequently. It's not as strong in that location, so likely much better over time. But it's not true that type 2 never occurs or comes back there with any significance.
ilg02 jane80952
Posted
The problem is I don't know what type I have yet. My swab results were lost. I will get the results of the mouth ulcer swabs on Wednesday, so at least if they were herpes related then I'll know what type I have. It's just really getting my down, and I'm confused as to why I would have an outbreak in my mouth whilst on suppressants. I am feeling much better now though, luckily.
FelizCastus ilg02
Posted
Cold sores are not supposed to be as common inside your mouth (usually external), but it's certainly possible, especially the first time. Usually inside sores are canker sores, depending on where they are. Canker sores are typically on soft tissue, and cold sores (should you get them inside) on harder tissue. Where were yours?
If you are on the daily meds for suppression, you would expect any herpes wherever located to either not break out, or to not break out too badly. Did you stop the meds not long before the ulcers? Which med and at what dosage were you taking? Just curious. There is no reason to suspect HSV2 at this point. Pity the tests for your initial outbreak were so poorly handled by the clinic. Unbelievable!
ilg02 FelizCastus
Posted
I got them in lots of places, wall of my mouth and gums on the bottom at the back (which isn't uncommon for me as I'm due to have my wisdom teeth out), underside of my tongue too but more unusually the roof of my mouth which I hear is more common for cold sores.
I was on suppressants during the outbreak of the ulcers which is why I'm so confused. I was taking 400mg of aciclovir twice a day. I'm yet to even know what strain of HSV I have due to the clinic losing my results, so I guess I have to be patient and wait for someone to actually help me properly. I just feel very disheartened by the whole thing, and am now panicking that something more sinister is going on. Anyway, fingers crossed.
FelizCastus ilg02
Posted
Since you get pretty bad sounding mouth ulcers anyway, perhaps this was the same, just a little worse than usual for whatever reason. What is the cause of your regular mouth ulcers? In any case, it seems unlikely that you would break out that badly in cold sores when on daily suppressive meds at the correct dosage, so if they otherwise looked and acted like your usual problem (just worse), I would suspect it's that, not herpes.
ilg02 FelizCastus
Posted
The cause of the regular ones is usually just stress and anxiety, or if I get a cold etc. They did look considerably worse but fingers crossed the swab doesn't come back with anything. Thank you for your advice.
FelizCastus ilg02
Posted
ilg02 FelizCastus
Posted
Nope - my dentist and doctor just said they were normal canker sores and sent me on my way. I live in the UK and quite often things like that are simply put down to stress. I'm more worried about HIV risks, despite the fact that I'm extremely low risk (female, heterosexual) and haven't really had any symptoms. I'm going to get another full screen tomorrow (5 weeks from exposure) to check. My anxiety is definitely going into overdrive though, so I'm trying to separate that from my concerns at the moment.
FelizCastus ilg02
Posted
Although it's true that canker sores are internal and cold sores usually (but not always) external, canker sores are a bit of a mystery. Nobody seems to know exactly how/why they occur, but physical trauma to the mouth (like biting your lip, etc.) is the usual trigger as opposed to stress and illness, which is more often associated with cold sores, yet you have been on daily suppressive meds. It will be very interesting to see how your results come back. Hopefully it really is just a bad case of canker sores (there can be a genetic predisposition, apparently).
ilg02 FelizCastus
Posted
The ulcer swabs were 'unusable', and I tested negative for both types of herpes via the blood test. I felt very confused and anxious so I went for rapid sti tests today and everything came back negative. The doctor isn't convinced that I even have genital herpes despite there being a cluster of ulcers at the time, and she basically told me to behave as though I don't have it unless I have a recurrence. Bittersweet situation, but it's the only proper advice I've received so far.
FelizCastus ilg02
Posted
ilg02 FelizCastus
Posted
I'm not sure to be honest - I didn't know there were different types of blood tests as I'm still quite naive on the subject and my doctors haven't told me much or kept me as informed as I would've liked. He just referred to it as an 'antibody test'. Obviously I did the initial swab but that was misplaced. I know there is no rapid test for herpes, I just wanted to rule out any other stis really for peace of mind. It was 5 weeks after the initial outbreak for the blood test. Guess I just have to leave it now until I have another outbreak, if I ever do!
FelizCastus ilg02
Posted
Fyi, the IgM antibody test is unreliable and not advised for herpes, only the IgG antibody test, but that's only good after 3 months from initial infection. Possibly good a bit sooner, but 3 months is the oft-quoted test window.