Hey i know its been a few years but if u get on id like to know officially what it was been going through similar things, i was thinking shingles to be honest
I am so curious about your situation. Did you ever get a positive swab? How are your symptoms? I hope that your life has gotten better. Please update us.
...a lot of people are having the oral problems that u describe because of their tooth paste... a lot of consumer complaints because if stanine fluroide in crest pro-health... ur other problems I can't say. hope this helps.
I had the test at 4 months post exposure and it was negative but my doctors are telling me that I am one of the ones who have a false negative because my symptoms are so obviously herpes.
I came back on here, not to discuss validity of tests, but to try and get some help and strength from you guys about how the hell I'm going to move forward from this, cause it's so bad and so frequent.....it's pretty unbearable...
You should undergo IGG test for HSV1 & HSV2 after Six months of possible exposure......It will ensure you...
Hi. Been a long time. I don't think I have the energy to go in to all the details, and it'd take forever anyways, so I'll be brief. Sorry. But I'm just so exhausted and depressed. I haven't had a 'confirmed' herpes diagnosis and it's taking its toll, so need to 'talk' to others. I just started to feel a bit stronger to post on here again and update those who have been following.
Basically I am chasing a swab diagnosis because I have been told visually that I have herpes. However, I have also been told by a derm that I have oral erythema multiforme, which makes sense to me. I am not on antivirals until I get a blood or swab test that is positive, so I am having daily symptoms. But nothing that is great to swab. The bum blisters don't have much liquid in them and scab very quickly. The derm and gyn agree that it is rare to have symptoms back to back, but are confident that it is herpes and that as soon as one outbreak clears another comes on a day or two later. My body can't seem to kick it. Probably due to immense stress. I also have a yeast infection that won't go. Maybe that is causing the outbreaks. Or maybe the herpes outbreaks are causing the yeast. Either way, I'm fed up. I'm also still developing polyps which is very distressing as the docs won't do anything about these cause they aren't dangerous etc. The EXTREME butt cheeks burning is simply unbearable. I can't bear clothes touching my skin and feel I need ice on my butt when it comes on (and then the spots come within 2 days). It goes down my shin too. And the lymph node pain in the groin and general recurring hot flushes are really getting in the way of me living any sort of normal life. At least now I know the bottom lip raw patches, blisters and peeling isn't always hsv and is caused by erythema multiforme, which in a way makes things a bit better, cause I feel mentally, that it is a break from herpes. I just need to start learning what symptom is from what, which will be hard. And by the way, the derm and the local herpes help group said have both said that they have seen many people who have had positive swabs but negative blood tests.
I guess I'm just depressed cause even when I confirm it with a swab I don't see much hope of it getting better cause when I was on the antivirals before, I only got 2 weeks before I got another outbreak. My outlook for life isn't so good right now. I can't bear to feel this sick for the rest of my life.
You should post your own thread if you have questions.
But I know exactly what you are going through!! I'm freaking out about the same thing!!
One month ago I had to switch from Valtrex to Acyclovir do to insurance reasons. The dr told me for suppressive therapy to take 2 a day, they are 400 mg each. My Valtrex was once a day, I always took it in the morning and it was 500 mg. Before I called the doctor I wondered if maybe the Valtrex worked better for me than the Acyclovir...Anyhow I talked to my dr's nurse and told her what was going on and she called me back and the dr said to take the Acyclovir 5x a day for 5 days. Today, Sunday is my 5th day, I really feel no better, at times I do but it seems once about 2 hours or so after I have taken my pill I start feeling yucky again. I got off work Saturday morning went home took a pill at 10:45, around 1:10 pm I started to feel flushed again, and noticed more mouth sensations or stronger, and my butt feeling hot. I took 2 pills and went to bed around 4 PM. I do not sleep well in the first place but got up at 11 pm, and at 11:30 took 2 more pills. I came to work and around 1:30 am to 2:30 I started feeling more flu like again, burning mouth sensations more noticeable, but feels hot and I am so sick of feeling this way. The butt thing started two weeks ago, I never had that before, last week when I was looking for sores, I never found blisters, I had those sore lines everyone talks about, like I had one on the side of labia, my whole vaginal area was swollen, slightly red as well. Yet this is when the itch thingin the anus was going on and thats another reason I decided to take the yeast infection medication. Then that pretty much did go away. Tonight before work I had my husband look at a spot because I feel like there was an area that felt sore way at the bottom of vagina, I think I am still looking for blisters or wondering why this is not going away. He says there is nothing there, but he says your hemmeroids are bad. I told him they been bad and that I thought some of the burning was because of the hemmeroids (internal) in the first place. When my vaginal area was all swollen so were the hemmeroids. I was trying to feel slightly inside the anus to pin point the burning or to see if I could feel a blister earlier in the week when that burning all started, because I have read that in women the herpes goes around the anus a lot. One day I thought I could feel a lump next to a tag I have that was on the entrance/side of anus near tag but I cant be sure. All of this makes me sick and I am a severely stressed out person in the first place. I take Wellbutrin (anti-depressant), and Adderall for ADD. I have a son overseas in Iraq, I have a husband that works away from home all week, while I work 3rd shift 30 hours a week and do online schooling. I have been very overwhelmed, especially since my butt first began that burning, cause I know its got to be HSV and it makes me even more depressed. I think my biggest problem is that I have not felt good for over 2 years, ok so I had a cold sore, I had flu symptoms for 2 weeks. Why cant I be like most people and then the HSV goes back into hiding, why does my mouth continue this burning presence mostly on than off. Now I am dealing with getting it through my head that HSV is in the genital area and it makes me sick. Today I said I wish I was dead, I am so sick of feeling like this. I had made an appt with a Gyn, as my other one I originally saw is no longer seeing anyone other than pregnant woman, well the appt was for Oct 4th, they called and left me a message Friday that its cancelled because the Gyn is going to be in surgery all day. I just thought maybe I could go see someone and make sure something else was not going on as well. Everyone talks like once the outbreak is gone it literally goes away and they feel fine, until the next OB. I came across this page and just wanted to vent, but I have those exact symptoms as you DiDiva, and Grace I do not know who you are, are you a doctor? I was hoping maybe you would see my post and put your two cents in as well. I agree with DiDiva, that guy gave her something, but what? I saw someone other than my husband a year ago, anyhow my point here is that after I saw him I got the BV back. I do not need lectured on seeing another partner, I know the risk. Anyhow I saw him 2 days before my *** felt like it was on fire, we used a condom, yet he wanted to give me oral, I agreed. I didnt think oral would bring on BV. I did tell him that last time I saw him I got BV....I never had any other contact then him in that 3 week time frame, with the beginning of all of this. I told him I have HSV 1...I have been seeing him for over 7 years and not once have I noticed any cold sore or sore on his penis, I do understand that there does not have to be noticeable symptoms. The only other thing I had in my life within that 3 weeks that I have not had for a year was alcohol, I drank 2 times out of the 3 weeks. I saw him all those years before and never had any problems, I also know symptoms can go unnoticed for years. I been taking the medication like I should and I obviously got an OB, yet it just is not getting any better, I do not understand. Are some of us just bound to live with it everyday, or most days? Or maybe I should get back on the Valtrex.
I feel your pain, I went to the Gyn a couple of years ago and had every std test done, I told her to do a blood specif hsv test. I had gotten sick with flu like symptoms and then sore throat, 2 days later what I thought was a pimple above my lip I popped and spread, cause then another cold sore started. When I had flu like symptoms and saw red bumps or sores all over my throat I went to the doctor, he said just a virus ride it out. Two days later I developed the cold sores, I went back he looked at throat and said when did the blisters come on? I said about two days after you saw me, he said yeah its herpes, like it was no big deal. I think my life ended then. He never offered medication and it really was not that bad other then flu symptoms and mostly the stigma of herpes. He never talked to me about the infection, never described it or gave me any advice or offered medication. I knew enough to get abreva and did so, I was sick about 2 weeks. After months and months of a sore mouth, burning sensation, canker sores I went to the dentist and he said I dont think its herpes. My mouth always seems sore. Thats when I decided to see a Gyn. So the test came back HSV 1 positive, thats all I know. Since she knew of my mouth pain and not feeling so well she offered to put me on oppresive therapy if I wanted to try it, so I said yes. I went on Valtrex, I think it helps me, yet no matter what I do I always seems to get this sore mouth and canker sores at times. Sometimes it is the roof of my mouth that gets sore, it always has this burning feeling, I hate it and its so depressing. Anyhow I wanted to stop the pills to see if I could get by without taking them everyday and within a week started to develop a cold sore and went right back on the Valtrex and used abreva, the cold sore went away with in a couple days. Prior to seeing this Gyn I saw a different one, I was having discharge that smelled very fishy after sex, was diagnosed with Bacterial Vaginitis, so he gave me gel and told me as women get older some just get it and even though its not contagious multiple partners could cause it, he said some women can treat it and be rid of it and some keep getting it back. I grew up with many yeast infections and bladder infections. Then I am thinking now this? I treated it and it eventually came back. Thats when I went to the 2nd Gyn, she treated me differently, for a longer period of time and of course offered me the Valtrex. I would get the BV, it would come and go then one day I went to the clinic because of it again, he prescribed me just the pill dosage for two months, it seemed to get rid of the BV. I have always been depressed do to the HSV 1 and am constantly looking for sores in my vaginal area, and the more I think about it the more I think I have probably had HSV 1 vaginally as well just never noticed the symptoms. I think back now and I used to get like a tiny little tear on my hood and I thought it was from just having sex to rough. Then one time I remember I was taking a shower and I always wash up and was washing my butt crack and I was like Owww..it felt like a cut at the top where the crack first starts and just a small area but the more I think about it, its just like the one that I get on my hood. Then I start to remember the times I "thought" I had razor bumps on my upper inner legs from shaving, and believe it or not I have even seen this bumps on my right calf below my knee. This last 2 weeks for me has been hell. I was sitting at work and about 4 am my *** starting to burn and feel like it was on fire, yet there was nothing there, in fact I couldnt really tell where this feeling was exactly coming from, I thought it was my hemmoroids acting up, they have been much worse lately but I have never had that feeling. This burning was not from deep in my vagina. I had a UTI 2 weeks before and I usually get yeast infection after treating so the dr prescribed me the yeast infection pill if I needed it. I was having a milky discharge, no smell, no burning right there in vagina. I was due for my period in a little less than a couple of weeks and normally I will have the discharge so I figured thats what that was from. Yet the very back part of my vagina and then my anus was where this burning, very slight itch seemed to be coming from. When I got off work I bought some vagisil and spread some in the area between anus and vagina and it seemed to help a lot and I took my yeast infection pill. The itching stopped but my mouth has been sore this whole time and then like 2 days later I felt bad burning on butt cheek and then I saw a 2 red bumps, not blisters, where the elastic line for your undies is at so I had some zorivax, thinking I have HSV 1, I figured I would try it. I really dont know if it worked because they werent sore or blistered, I was scared. I still continue to feel this way, I did find then a bump on the back of my butt cheek but not blister. Then I think I may have felt one in the shower in the upper butt crack area that gets sore rarely. I think I probably have HSV 1 genitally. On Wed when I got off work I called the doctor because I began to feel flu like symptoms again, my throat felt sore, I looked in my throat with the flashlight, I had the same sores when I got my initial outbreak. This is after my bottom felt funny.
Oh ok yeah completely diff than what I'm going through...
Thanks Grace. I am definitely feeling better on the tablets. The burning feeling has gone - especially on the butt - man that was horrible. and the internal swelling pain thing, like inside my vagina cavity and up the urethra has gone too. The cuts have gone also.
TiredOfGirlyProblems - on first infection I got very long and large and deep open lesions running down both sides of my inner vagina lips, and above the clit. Not round but more long, but may just have been like that cause the skin folds funny in there. Since then recurring ones are less severe and smaller, but still more long than round. May be singular or a few. They are open and deep and very sore. The ones on my butt start as terrible burning of the skin, it gets really hot then bug bite like spots come the next day or so, then small blisters appear on the bumps a day after that, but kinda come up from under the skin. Not surface spots or filled with puss like a normal spot. They itch a lot and they hurt for a couple of days. Then scab and fall off after a few days. Hope that helps.
well I wouldn't start daily suppressive therapy until you confirmed that this is herpes. As we've discussed previously, even if you do have genital herpes, not all of this is herpes related. Just try a 5 day or so course of acyclovir and if symptoms haven't went away, no more acyclovir - be seen for symptoms each time you have them. herpes ob's will not cause non-stop symptoms like this.
DIDiva if you dont mind me asking what did your small legions look like??
Thanks so much. Saves the 'doctor chase'. Still no word back from swab. Should be back by end of week. But ya know, I'm kinda not even thinking about it. Kinda think that even if it is negative, the doc already said he's pretty sure it's herpes and the lesion was small and healing by the time I could get in, so good chance swab will miss it this time. But will obviously let you know.
I'm wondering the same thing? Did you ever get a positive swab???
it doesn't have to be exactly 12 hours. put at least 8 hours in between doses though.
did your swab come back yet?
bump. tried calling doc again today but no luck. any help with this guys?
Hey, doctor just told me to take acyclovir twice a day but how accurate does the timing have to be? I mean does it mean anytime during the day or exactly 12 hours apart. If I take it at 7pm and then 9am does that cause problems? Worried about not taking it right and causing an outbreak. Tried calling to ask but they couldn't speak to me at the time. Thanks.
Thanks Grace. Somedays I am not too bad but tbh i'm pretty depressed. it's the struggle of it all. I had also seen a derm who was who did the vaginal biopsy to find it was polyps not anything else std-ish. All the info i can find on polyps say 'infection or irritation can cause them'. Well I know I got an infection (herpes) and they started during the first initially outbreak. All I can wonder is if it was due to the massive swelling. But then surely they still wouldn't be growing 9 months later! Maybe a really really bad persistent yeast infection can cause polyps lol? I really wish I could believe it is all coincidence but it just doesn't fit. I need answers, for me of course but also I need to know what's causing it all so I know what I could pass on. Weird thing is, if i had have been told i don't have herpes but have ongoing bv, yeast, lichen, etc etc i wouldn't care as much - cause it's not a contagious problem for partners. I'd take the pain of all these everyday for the rest of my life if I knew i couldn't harm anyone else - the thought of 'controlling' a virus forever and the worry of protecting others, is so tiring in itself. I miss my stress-free care-free health days. Anyways, thanks Grace. Appreciate it.
don't limit yourself to what you could've caught, you also have to think, what else could be causing this - sometimes it really is coincidence. A dermatologist might also be good for follow up too - chronic irritation in the genital area can cause problems same as they might be more likely to pick up on other non-std issues orally too.
I do understand the frustration and exhaustion parts- pretty sure I've told ya before the basics of my own 4 year saga from years past. It was a total pain in the butt to follow up monthly for several years but I did finally get answers from it all even though I didn't have immediate relief. My herpes is nothing, it's the other stuff that complicates my life and causes me problems :(
Oh I understand every single symptoms probably isn't due to herpes. But nobody can tell me what else I could have caught from a penis that would cause this all to happen. I was really healthy before all this. Oral symptoms haven't continued all this time btw, the initial time was the worse sore throat I could ever experience, very red and swollen with very very sore huge neck glands and raw open patches on lip with one singular big blister that didn't pop. Since then the recurring oral symptoms have been the red raw patches and teeny tiny blisters on lip and inner edge of lip, with glands up and sore throat. But this has settled a lot when it happens. But I do have a handful of growths under my tongue - dr guesses polyps too without biopsy cause they happened at the same time as vaginal ones and all the stuff only happened after contact with a 'new' penis! And no, they aren't going to remove all the polyps. So I just have to continuously watch my body grow these things and I can do nothing about it or stop it. On top of the pain and lesions and itching and burning butt and spots/blisters and sweats and hot flushes and internal pain and node pain etc etc....it's been an exhausting and trying time!
I will be incredibly surprised if this is all herpes related as I'm sure you have guessed long before now by my replies. I'm still betting it's something else going on. oral and genital symptoms like this for this long are rarely herpes related.
they going to remove the polyps?
Thanks Grace. I really really appreciate the direct answer. Yes, on top of the herpes; polyps and yeast are present so it seems my body has lots going on right now, but nobody can explain why the polyps developed at the time of the initial herpes infection, and why they are still growing and multiplying - that's why I thought there may be a link! Easy for docs to say they are harmless, but something has caused them and still causing them to grow but nothing will be done about it. My body is changing and I can't stop it. And that's only genitally. All the same symptoms are orally too. So I wonder what other infections I have got from brief intercourse and oral cause this all happened with a bang the week after....I wonder if it's all a side effect of the herpes or some other infection as well - either way I can obviously pass it on but it looks like I will never find out what is causing the polyps cause nobody will investigate cause polyps are harmless - I just want them to disappear or at least stop growing and multiplying. Sigh. Thanks again Grace for that info. I live in hope to have relief and get these outbreaks down to a murmur...I can't wait!
no polyps have nothing to do with genital herpes.
yes the suppressive dose will help if this is herpes. The herpes will heal on its own and it sounds like it was already mostly healed when you were seen. even if you would by chance get a + lesion culture, you already know you have far more than just herpes going on. you need to be seeing a gyn monthly as needed to get to the bottom of this, not std specialists.
yes, suppressive therapy reduces ob's significantly. I myself went from 20 ob's a year to 3-4 on average back in the day.