Hi everyone. I have a real mystery. Been reading posts (loads of info on here which is great) but finally decided to ask my questions. Warning - long story coming! Sorry for being detailed and graphic but I'm guessing more info, not less, will help you all. Having trouble getting a diagnosis and figuring out what the heck is going on with my body!
I had a brief encounter with a man - vaginal and me giving him oral sex - for a short time. It was not full sex, more like fooling around a bit and then it stopped - but there was unprotected vaginal and oral insertion of his penis (for maybe 10 thrusts and maybe 30 seconds of oral) this happened two or three times during the course of the night. Then the same thing happened the week after. Then the fun began.
Nearly two weeks after I got internal vaginal pain (like bad period pain) and discharge for a couple of days and then the next day came extreme extreme extreme itching and swelling and pain of the vagina/vulva. Went to the doc who said it looked like a very bad yeast infection and gave me meds. Discharge got so bad that it was running out, so not clumpy. Next day it was sore to pee and got bad chills and fever and night sweats and was very very sick for 3 days and nights. But I was away from home and it was a weekend so couldn't easily get to a doc. During this time I developed some papercuts down either side of the folds on the outside of my vagina entrance and a raw spot inside. I suffered on for nearly 2 weeks until things cleared up.
Now before the vagina symptoms started I had a red raw patch on my lip which was wouldn't heal, but didn't think too much about it although I had noticed it as being different but thought maybe a bad case of chapped lip or something. When it did start to look and feel better or healed then is started again soon after. Then after the vagina symptoms had started i then got what looked like a very shallow blister type bump next to this raw patch. It didn't burst or go yellow, but just kinda dried up and then was just like dry chapped area on lip. I also had a very sore raw scratchy throat which was red and inflamed.
Everything healed but went for std check anyway and everything came back normal. I asked about herpes and told it would be round blisters that burst not long open cuts which is yeast. BUT here's my problem. I've been sick ever since. Get a few days where I have no vaginal problems and then it starts again -internal pain,feels of clit/urethra is swollen and pressured, very painful papercuts in folds and next to clit, itching, burning. Also happens on buttocks and internal thighs with sharp stinging and then one, two or maybe 4 red spots - but they don't burst, just sort of dry up and then heal. Burning skin feeling and a hot feeling at bottom of back. Get hot red sunburn like rash on buttocks and thighs with a flushed very hot face and sometimes shivers - but this is lessening each time it happens. No further blister on my mouth but often have red raw patches then peel skin a bit and eventually dry up and heal.. Lips feel burny and itchy too when this happens. Also get raw sore throat which turns into mucus chesty cough. Been back to doc and given vaginal yeast treatment again (internal and oral tablets) and then 2 different antibiotics to 'kill anything that may be lurking'.
(thanks if you're still reading!) So now, I'm in the position that I have been very ill from this encounter with this guy (who says he was clean for stds, but does get sweat/fungal rashes - I'm now thinking this is actually herpes and not sweat rashes??!?). I've been treated for yeast and with antibiotics, but I still get these symptoms. Got a rapid HSV2 test done which was negative and waiting results of igg. In the meantime the doc has agreed to let me try a month of acyclovir (?) to see if it helps.
Sooooo my big question is can I have gotten genital and oral hsv1 from this guy's penis, due to his 'sweat rash'. Read genital outbreaks are rare for hsv1 but seriously, I have had sooooo much pain and discomfort - I knew straight away something major was happening - not just a yeast infection. And if it is hsv1, why the heck am I getting frequent outbreaks like this? I've read it shouldn't reoccur as often but been tested for yeast and bacteria and stds etc and all was clear, but they did still treat it just in case the swab missed the yeast (swabbed once for herpes but was days later and was clearing up - another time they wouldn't swab as only small cuts and no blisters in vagina area - helpful eh?)
Any thoughts people? Hsv1? Fungal (although unlikely from what I've read?) Anything else spring to mind if IGG comes back negative for both? I've probably left out loads of info (sorry, been kinda going with this for months now - I forget what is normal now!) but will answer queries to fill in any gaps if needed to help you out with 'diagnosis'. Cheers everyone for reading and here's hoping you've some ideas to put me out of this misery. (by the way I hadn't been with any other man in nearly 2 years and NEVER had any problems vaginally or orally like this before. Truly fed up with the cycle and feeling crap all the time - need some pain free time please! Got the point i don't even care what it is now - i just need to know!!!! Arrghhhh. Thanks guys.
odds are this isn't genital herpes going on. Symptoms as you describe for this long would be very atypical for herpes. Honestly I wouldn't even try the acyclovir but be seen every time you have symptoms and get cultures for herpes.
are you seeing a gyn or your regular doctor?
if you continue to culture negative for yeast and bacterial infections, might be time to consider things like a wheat allergy or something like that that can cause oral and genital issues.
did you get tested for gonorrhea and chlamydia too?
Hey, thanks for replying. Yeah I agree, doesn't fit the normal description of genital hsv1 by having frequent outbreaks - but that's what we're looking at cause all other stds were negative including gon and chla. Doc thought it was hsv2 due the extent of pain and frequency but was just producing long cuts in vagina area with the blistery type spots on the buttocks and thighs - but the rapid test was negative so by default it must be type 1. Been seen lots when having symptoms with no bacteria or yeast. Def don't have a wheat allergy. I have thought maybe a bad infection but cause it completely goes and then comes back a week or so later then it can't by - surely an infection wouldn't clear up without treatment, that's more viral behaviour isn't it? Seeing reg doc at minute but after igg comes back and a month of tablets,if no better then will be sent to gyn or dermatologist (which would you recommend?). Taking 2 tablets a day. I guess this needs to be at regular intervals, how important is it for them to be exactly 12 hours apart? Thanks so much for the reply. Kinda stressed out now about all this.
Hey in addition to my previous post here (hope I gave you the info you needed) i was thinking, is there any other genital viral infections that you can catch from a guy's penis (as he didn't give me oral sex, just me to him, so has to be from penis)? I've read a bit about mono and ebv - but can this be transfered from a penis to a vaginal and to a mouth? If so, what are the symptoms and treatment (cure?) cause i can't really find info on genital infection of these - if they do exist? Maybe mrsa? Also, if the guy had a 'sweat rash' is that fungal? If so, can this be passed on to vagina and mouth and cause these symptoms (saw one post where HHH said no but surely it's contagious?)....long shot i know, especially as the symptoms are so severe, come and go, and have already been treated for yeast infection - but i'm kinda really desperate now and looking at ANY possibility other than gential and oral hsv1. Thanks a lot.
Oh and also, I was looking after an infant for a few weeks when i had all these symptoms and they broke out with painful blisters all over the tongue and two strips of blisters on the buttocks that scabbed over - you can imagine my horror now as i'm worried i passed on hsv1 - can kissing games and blowing raspberries on thighs and lower belly button transfer the virus through a babies thin skin? Doc said it was a 'viral infection' but I didn't ask specifically about herpes.....far too frightened ( I am a terrible person I know, you don't need to tell me - I've lost lots of sleep over this) Just adds more weight to the argument that this is hsv don't you think? By the way I'm well angry that herpes isn't a routine test - i know it's down to money - but seriously - it's really really needed!!!! Imagine how much emotional stress and heartache would be avoided? Thanks a lot for your help. You'll definitely be rewarded for all your help to people on here - i've seen how many posts you've made to help folk. Wish you'd talk to the doctors and 'train' them how to be with their patients, lol!
I'd stop the acyclovir. it's going to interfere with you getting an accurate lesion culture of new symptoms when you get them. Honestly you want to get symptoms so you can get them cultured to rule out herpes for once and for all.
I recommend the gyn first. if they are stumped, dermatologist is the next best step.
Hey again, thanks for taking the time to reply again. I know what you're saying but to be honest I wanna stick with the tablets for a month - the possibility of having a period of no syptmoms is just too nice to not try. Obviously if it does nothing then I'll stop and go back to swabs. However are swabs not just accurate only a third of the time or something? so even negative ones may not actually be negative? Seems like not great odds to me to get an accurate swab so will try to get relief from tablets. fingers crossed.
Can I get some clarity with a few of my burning questions please and then i'll stop taking up your time (there are more worthy people on here that will need your help too - sorry to be a burden)
1) Are there any other viral infections that can come from a penis and infect a vagina and mouth?
2) Does herpes always show the same symptoms in the same person or can they get a rash, then razor burn, then blisters, then cuts? So it changes with each outbreak? Hope this makes sense.
3) What about mono and ebv in the gentials from sex?
4) Can a baby get hsv1 on the mouth and buttocks from play kissing etc
5) Can bacterial or fungal infections be transerfered via sex?
6) Can bacterial or fungal infections go away and then return without any treatment or is this only viral behaviour?
7) Can oral herpes present as red raw patches on the lip with open slits and peeling skin (sort of metalic taste you know?) instead of a blister?
Thank you so much for your help with these final poitns. D. Oh and how long does it take for acycloivr to start working so I know if symtpoms are def not herpes? Thanks a lot Grace.
the accuracy is increased greatly if they are pcr swabs for herpes and not just viral cultures. same as if they are done within 48 hours of the appearance of symptoms, they are more likely to be accurate.
you'll feel better within a few days of starting antivirals if any of this is herpes.
Thanks. Only culture swabs near me. Any thoughts on the other points I asked? Would really help ease the 'wonder' even if you tell me bad news :( Thanks, then I will leave you in peace I promise. Really appreciate having had someone knowledgeable to ask these questions to.
Grace you were right! (bet you're not surprised) But now, this horrific and very painful mystery continues. My IGG was negative for both 1 & 2 (both well under 0.90). So it looks like from an igg and a rapid test for hsv2 - that I have no herpes! Which I know should be great news, and it is, but now the questions in my last post are so important now. What on earth did i catch from this guy. And I am totally 100% sure I got an infection from him - no doubt whatsoever at all. It was hell on earth. And still is. Although you might not be able to tell me what it is, can you tell me other than herpes, hpv and hiv, is there any other stds (or infections passed via penis that aren't classed as an std) that isn't curable? I suppose i kinda wanna have a bit of relief that if I know whatever this terribly painful infection is, that it can be cured - when i find out what it is. Thanks. Recap on main issues in case you have any ideas cause reg doc doesn't know and is sending me to gyn but could take ages - just worried that damage will be done or something while waiting to figure out what this is. I'm in so much pain and uncomfortable.
Lots of outer vagina swelling redness with intense itch, pain peeing and loads of thin discharge on first infection but not now. Recuring now - Burning, itching, swelling feeling of urethra clit and pelvic area inside, odd flash of hot sunburn rash on thighs and buttocks, painful long lesions on vagina, itchy sore red bumps/blisters on buttocks and thighs, fever with chills, nodes swollen, mouth lips red raw and blistery, red painful scratchy throat. These are not present all the time together, they all come and go but really only have a few days where nothing is going on.
What is this infection? I can't go on anymore like this. Any ideas at all people, so i can at least start asking the docs the right sort of questions to get them to test for stuff. All stds where clear including gon, chla, tric, hiv, yeast and bv. Any other stds that are more rare and not generally tested for, which could be a possibility? Thanks a heap. I NEED to sort out this mystery so I can get on with my life!!!!!
Oh and have a burning red itchy rash around anus as well now, sore to touch and it's kind of wet - almost like a burn would be. not nice. any ideas and feedback to this mystery infection? I'm at a complete dead end now - but in so much PAIN!
Hey. Saw gyn and had full exam and isn't sure at all but thinks, due to all stds being negative, that I got bv from intercourse, which quickly developed into PID (or from other bacteria due to intercourse) which caused the swelling pain and discharge, which triggered lichen to start, causing the lesions, burn and itch. Plausible? Seems like a lot of coincidences to me, but it's all I got! (just read post about girl with similar symptoms who ended up positive for hsv2 via swab despite repeated negative blood tests, so herpes is still a thought with me....wish I could let it go already!)
Really Grace!?!?!!? You hate bv more than herpes? WHY? It's not an std or incurable or contagious, so how come you hate it more? Do you get bv a lot? What causes it for you? I find it all very weird. Can bv honestly cause major issues such as PID - I thought that was a result of untreated stds. In your experience do you honestly think bv could cause PID in 2 weeks to cause internal pain and swelling, swollen outer vagina, burning, severe itching, loads of thin discharge and llong open cuts? I've read you generally don't get any syptmonms at all and it solves by itself so most don't even know they have it. And then for bv to trigger lichen, which they are saying the recurring symptoms are which are far less intense than the first episode....mmmmm? I don't buy it myself....can't belive that from one encounter i get bv, pid, lichen and yeast and an allergic reaction - saying the symptoms are a combination of all those - more plausable it's hsv if you ask me - but no positive test yet.
I've read a few people on here testing positive through a culture swab but negative on a blood test for herpes, even after 4 months, how often does this happen? Also Internal exam at gyn showed fluid in pelvis and abrasion on cervix (cells coming from inside i think she said) what does that mean? Is this a sign of std/infection? Thanks. The mystery isn't solved yet but maybe i'm getting closer. Can't wait to be able to post to you and tell what the end result of all this is! Hopefully soon!!!!!! Argh!
My herpes is a pain in the butt - literally even sometimes but I can easily control it with a pill or two a day and it rarely makes its presence known to me. I had bv almost non-stop for 4 years. It caused my herpes to reoccur frequently. It caused damage to my skin in my genital area. It caused me to itch and have pain far more than my herpes ever did. I've had to avoid sex because of bv more than I ever had because of my herpes and I used to have hsv2 recurrences 20x/year!! I've never had to make extra trips to the doctor because of my herpes ( once I was diagnosed of course ) but I lived in the gyn's office for 3 years because of bv!! I still get it at the drop of a hat and had to give up receiving unprotected oral sex because otherwise I get bv again. herpes can't hold a candle to bv for me!!!
your gyn is certainly going to have to do a lot more testing for you. did they schedule follow up appointments? have you had an ultrasound yet?
God you've been through it. You must have been so fed up and stressed. Had no idea bv would cause that many issues. Everything i read says you hardly ever even notice you have it so what's the deal with that? Was the damage to your skin caused by lesions from the bv or lesions from the herpes which was set off by the bv? And what type of damage is it? (sorry to ask personal questions but this is hugely helpful) I have like long hard ridged scars where the big open lesions first were. How do the symptoms of herpes differ from that of bv if they can be similar. How do you distinguish between the two? You must know your body very well now!
I've had a day to think about it all and unfortunately I'm still believing it's herpes :( Will just need to go back for another appointment when I can and see what they say. First I need to go through the treatment they've given me or they won't try anything else, so it could be a bit of a wait. Have to rule everything else out first I think. Just too unbelievable that I would be sooooo sick with awful stuff going on with the genital area, and fever, chills etc etc, 2 weeks after new partner, for it just to have been bv to then trigger lichen. I was in terrible pain so just don't buy it. Too far out for me to accept that.
Couple of questions if that's cool
How often do people test negative on bloods for hsv if they actually test positive on a swab?
How did you finally get rid of bv?
Can bv cause really bad swelling of the vagina inside and out?
Does the inital herpes outbreak causethe whole vaginal to swell and overall senstiive pain or is it only the blisters/cuts that are sore?
Thanks for this post grace, it has been really helpful.
Monthly! I wish. More like every week, seems to always be something going on! Either internal pain, outer burning, itching, lesions, hot rash on bum and things with itchy red spots, burning raw lips, sore throat, swollen glands - the list goes on ;( Thanks a lot. Very useful. Will let you know outcome when I get it. Probably in about a year at this rate. Fed up.
DiDiva, I know exactly how you feel...been getting very similar genital symptoms, pretty much all as you describe but no fever or chills...it has been a few months and it's since got a bit better but the sad part is I pretty much don't get any visible paper cuts anymore and can't time my doctor visits for culturing. Like you I've also been tested several times with my HSV 2 being negative (I always had oral HSV 1).
Question for you, did you maybe test too early? Igg antibodies generally take time to build up, roughly 3-4 months for most people but even longer for others. Wait it out and get tested again. In the meantime please keep us posted on your status and if you do get your lesions cultured before you do the blood test please post the outcome here, as I feel like your symptoms match mine the closest on this forum and I would like to know how it all plays out. Good luck!
Hi. So I'm not mad. Someone else is going through this too. What's your story? I'd be really interested. Was it after a new partner? Blood test was 4 months post exposure. So would like to believe it but..... I will let you know the outcome on this thread if I ever get one. Whatever it is it is contagious as I definitely 'got' it from someone else, so I have to find out what it is and get it sorted before passing this on. I too can't get to doc for swabs in time. I'm getting very frightened now in case this is some horrific disease. Gyn recommended getting HIV test done again - scared stiff now.
Your story very much resonates with mine. I was in a long serious relationship with someone I started seeing when we were both virgins, so I never had any problems of this sort until like you I slept with a guy I did not know. I used protection and let me tell you, I thought that would have me covered, no pun intended. Things like herpes never even crossed my mind. So two weeks later I start feeling really raw down there, so I assumed it was from the rough toilet paper that I've been using (I was in a diff country so they don't really have anything better). I never bothered looking to see what it was until I came back home and saw what looked like two deep oozing cuts on each side of my vulva. I assumed it was a really bad yeast infection even though I never had anything like it. I also had a lot of redness, pain, and irritation, could barely wear jeans. By the time I made an appt with my OB gyn the cuts were gone. But the redness was still there and so was the constant pain. She seemed very hesitant to even look down there but finally did, and saw nothing. Gave me a blood test for Igg, at which point it was too early anyway and the result was ofcourse negative. After that I kept having recurring pain and papercuts, this time just one at a time and also recall stabbing vaginal pain with some oozing like discharge, so clearly there was a sore inside. By the time I'd make it to the doctor nothing would be visible. There was a whole host of other symptoms too like enlarged lymph node down there, stiff neck, horrible new type of headaches, and general weakness. At 3 months post exposure I got tested for all STDs and candida, all of which were neg. HSV 2 including. Today was about 16 weeks post exposure for me so I went to a doctor to get my blood drawn again, will let you know how that goes.
I do plan to retest with my final Igg at 6 months, if I don't get my lesions cultured before that, and if still negative confirm with a Western Blot, which I heard is so difficult to get. Only then will I calm down. This caused me a lot of anxiety, embarrassment, and fear. I keep going on everyday thinking this is it, I have herpes. I don't even know how I still function at work, cuz when I come home I just collapse and can't do anything. I'm clearly depressed and want my life back.
Don't freak out about HiV, I know it's hard not to, but take the test. Chances are your symptoms are not caused by HIV either and it will ease your mind once the test comes back negative. It is much harder to get then herpes.
I have two threads out there, one with Grace's responses and one with Dr. Hook's. I will update my situation there, so you can follow along.
Don't lose hope, I seem to lose it alot but on rare minutes I regain it. We certainly learned a lesson and hopefully we'll both have favorable outcomes and will know better next time. I'll pray for that.
Hey there. This is a nightmare isn't it? I think I'm starting to move on from hsv. Well, somedays I am. I just think my symptoms are too often now to even by hsv2. although the spots on my buttocks make me think twice about this. And of course having the most terrible infection 2 weeks after contact. The pain was awful and the itchiness and swelling was unbearable. And like you - I'm thinking, it can't be anything else apart from hsv. You don't hear of any other std (or infection) causing all these sypmtoms. I'm not really buying the whole daignosis I was given as to be honest it was a guess for my gym as I've tested neg for everything. But if I spend a day just thinking, well all stds are clear (well the common ones anyway) and whatever this is is just a coincidence in timing or a yeast or bv infection from the encounter triggered all this - and if i met a new partner and we got std testing together - i'd come out clean - so there shouldn't be a problem. But then I get the swelling and itching and cuts and hot feverish face, red peeling lips etc and then I know I caught something from this dude. Round and round in circles. And the fact that the symptoms come and go makes me thing viral not bacterial and there is no other viral infection of the vagina that I can find out there. What about you? Anyway, I'll follow your post and I too will post on here if I get any answers. Can't wait until we finally get to the end of this horrible road. And you know the worst part - I didn't even have full sex. Should have just carried on and enjoyed myself instead of stopping it to be careful cause the worst outcome happened anyway, ha ha!
Yeah, I've had so many regrets over this myself. I was always careful before and thought this would never happen, but I guess never say never, right? It is one of those viruses that's so hard to diagnose, surprisingly enough. I always thought anything STD related would pretty much be a piece of cake - order some tests, get your results, deal with them accordingly, etc. Here it feels like I have to question my blood test result everytime, like am i really negative with all these symptoms? Come on, no way! I have not seen any other condition that would produce so much pain In combination with ulcers, as atypical as they are, and I ve been reading way too many posts where peoples blood tests just don't show antibodies in time, or ever. I feel like there's an overwhelming percentage of people with uncertain Igg status, which to me looks more than the stated 5%. I wish my chance of not having this was really 95% at this point. I'm gonna believe my symptoms over bloodwork, as that is what I can actually feel. Its funny my sister is a doctor and she seems to be like the rest of them, she states i dont have herpes based on my bloodwork but its not that simple.
I was going to ask you if your medication is helping your symptoms at all. I was prescribed Valtrex by one gyno who claimed I have Hsv 1 down there, even though it is next to impossible to get genitally once you have it orally like me. I was gonna try out taking the pills just to see if i feel better, but I really don't want it to delay my already delayed seroconversion. FYI I have every reason to believe that the guy I slept with has herpes, saw his friends saying stuff on facebook that kinda goes along with that.
I'm really waking up everyday thinking it is all just a bad dream, just to realize that no, this is now my reality. I'm supposed to be going away in less than a week yet I had no time or desire to prep for this trip cause I'm in so much pain and discomfort and my energy is fully dedicated to researching this condition. I have a lot of thoughts right now, like my friends who have slept around for years without getting anything, I mean God bless them and all but for me it took only one night of protected intercourse. I did not enjoy it either, which sucks. I lost my best friend over this, who also happens to be my ex. He even sensed that I was gonna sleep with some random person and told me to use protection. I mean i did. Ofcourse I just laughed at him at the time but hey, the damage is done.
Let me know how the anti virals are working out for you so far. I think if they don't help at all it has to be something else, and I hope that's the case for you.
Hey just an update. (Grace, I post back on here as it's directly to do with my herpes issues rather than general std enquiry). Been back to doctor. Long story short. She says my symptoms are herpes. Although not classic. If all else fails after other tablets and treatment and tests for yeast, bv and pid etc then they will put me on antivirals for a while to see if it helps, 'because not everyone tests positive on blood work for hsv'. She said blood tests are they to help doctors make a diagnosis but sometimes you can just trust what you can see and hear. Why didn't they do this months ago. Arrghhh. Of course I don't want to have hsv but if I can take tablets and get some relief then that's a step forward. And if I don't get any relief, then I don't have herpes and will just have to live the rest of my life in misery with this mystery infection that nobody can figure out!!!!!
I think your provider is misinformed about herpes testing.
at this point you need a more definitive diagnosis though no harm in doing a 1 week course of acyclovir but I wouldn't start suppressive therapy unless you had actual confirmation of your herpes infection. at this point you have none at all.
I know. But she's at a loss (and so am I to be honest). If all else fails I'll take the tablets to see if there is any change. What about yeast Grace? Do you usually get a yeast infection with an outbreak? Cause she said even if you test postitive for yeast it doesn;t mean it's just yeast going on and it could be herpes too cause they often occur together, True?
herpes usually does not cause yeast infections. I'm not sure why she would say that if you test + for yeast overgrowth that it doesn't mean you don't have a yeast infection. typically with the cultures for yeast infections it gives an indication if it's a little or a lot so the provider can determine if it's worth treating or not.
if your regular gyn is stumped, perhaps a consult with another would be warranted.
Got swabs taken and waiting for results. that's when she said even if it is yeast it doesn't mean that there isn't herpes going on as well as you often get yeast or bv with herpes outbreaks. Do you agree can this happen or do outbreaks come on their own without yeast or bv?
When you get an initial infection of herpes does everywhere itch or only where then get sores. (eg the outer vagina lips itch intensely even if no blisters occur there)
And when it reactivates and get an outbreak, does is travel down one nerve pathway so you get just an outbreak on one are like vagina/thigh/buttocks or can it travel down many pathways and get a widespread outbreak that shows as some bumps on both buttocks, itchy vagina with discharge and a blister on inner thigh.
REALLY? Thanks Grace. Ok, this then helps ease my mind a bit more that I don't have hsv. BUT WHAT THE HECK IS THIS INFECTION? Arrghhhhh. I am in so much internal pain, swelling, itching, discharge, lesions, burning stinging skin before red spots come on buttocks that itch, some little blister type things that don't burst open just fade and scab. And all tests and swabs say no stds. No docs have a clue. My skin is on fire!
So the pictures you see on the web with spots all over buttocks will be a first infection not a future outbreak?
Hey, Thanks Grace, no offense to you, but I would LOVE to not have to talk to you again, lol, and head over to the women's health board, but there's been a development.
Manage to see doc again, but it was a different one (had to take any i could get at short notice), as I'd loads of thin discharge, itchy hot vagina with some open cuts near clit, swollen nodes, hot itchy red spots on buttocks and internal swelling feeling and LOTS of pain. Told her the story and my history and said it DOES sound like herpes dispite the negative blood test. Said a yeast or bacterial infection wouldn't be painful or cause swelling, especially inside or cause lymph nodes to swell and be painful. This could only be herpes.
Said it could be that the lesions are happening inside the vagina and on cervix which is why i don't get loads on the outside and why it's causing me internal pain. Also says that i could be having yeast or bacterial infections with this too (will take a week for results to come back from swabs taken earlier this week for yeast and bv). Cause it was an emergency doc she wasn't set up in a normal doc office and didn't have any swabs etc to take a culture but said it's hard to get a good culture from the cervix anyway.
So, now I am to finish the course of antibitoics then treat for yeast as i'll probably get it from antibiotics and then go on suppressive therapy for a couple of months to see if it helps. Said there was no poitn in restesting on blood test cause if i didn't test positive after 4months then i likely wouldn't show positive now and i'm just one of those people who don't produce enough antibodies to be picked up on a blood test.
Thanks Grace, may consider that if nothing else works. But not sure what else Terri could tell me know. You kinda know your stuff eh? So frustrating that the blood test is negative but I've all the symptoms. At this point I want the blood test to be positive just so i can get treatment and stop this cycle, how crazy is that? Why do you think this doc isn't up to date? Due to the swab info she mentioned or cause she said I won't be producing enough antibodies in blood?
actually your symptoms don't sound all that much like herpes at this point. continue to be seen when you have symptoms for proper exam. make sure they are testing you for yeast and bacterial infections each time and if they suspect herpes, they need to be proving it with lesion cultures, not by seeing if suppressive therapy changes anything.
Hey thanks Grace. I will have a chat with the doc and see if they can see me EVERY time, rather than just saying there is no point. I agree that getting a culture is the best way but this is proving very difficult. I've noticed that I have long fleshy finger like growths sort of on the opening and coming out of the opening of my urethra. Could these be polyps or something? Do you think this could be causing the swollen internal pain, maybe urine infections,would that cause pain in the whole pelvic area? I wouldn't have thought that would be due to recurring yeast infections though if that is the case? Unless there are polyps in the vagina, would that cause yeast infections? However I'm on antibiotics so I would hardly get a UTI at the minute. Do you have any experience on this at all?
And you can clear up one FINAL query I have about herpes please :)? Why is herpes often confused with a yeast infection in women and goes undiagnosed? I assume this is because the symptoms are the same? So these women must also not see any visible blisters on the outside of the vagina and just have an itch with discharge? Thanks.
you need to ask what these things are you are noticing next time you are seen.
if this practice says no reason to see you every time you have symptoms but haven't been able to tell you yet accurately what all is going on, time to seek out a different provider.
why does herpes often go undiagnosed? well part is providers don't want to suggest it and deal with it as well as sometimes they just don't even think well perhaps this is herpes. unfortunately some providers diagnose vaginitis without proper testing for it. sometimes they won't even do an internal exam when you go in with vaginitis complaints, they just take a quick look externally, see a little bit of discharge and notice the skin looks red and irritated and proclaim yeast without any further exam and testing. others just assume that they don't see "those" kinds of patients so they don't even consider testing for herpes.
Sorry, meant to thank you for replying. Just don't understand how some doctors say i can't have herpes cause i've no blisters, then others (like you have just stated) say you can have herpes cause it can look just the same as a yeast infection? Does this mean herpes is internally in the vagina? Have I understood that right?
Ok thanks. Mmmmm but you said that there could be discharge with red and irritated skin so does that not mean the discharge would irritate the skin if the herpes is on the cervix. And is it see-through clear like water or do you mean thin and white, (so just unlike the clumpy yeast discharge)? Sorry, not meaning to be awkward just really want to understand this.
And with regards to a swab, if my doc took a swab of the vagina in general would that be good enough to detect it or does it have to be on an exact internal blister. And if so are these easy to see or can they appear as just red skin with no obvious blister?
Appreciate you helping me with this final query so I feel confident going back to doc and making sure they are doing all they should be doing! Cause you may be right that my doc may not know everything as seem to be condtradicting stuff you say.thanks a lot. You have helped me loads with understanding this. I feel I've nearly exhausted my knowledge on herpes now, hee hee.
Hey thanks, I don't think I've had any pcr swabs done yet, just normal cultures of the vagina.
So, here goes, can I just confirm where I stand with all this so I feel confident taking on the docs, hee hee?
1. Herpes can appear inside the vaginal and on the cervix to cause a thin discharge, but not often and not with every ob. And if it does, it is impossible for it to be also appearing on the buttocks/thighs as it only reactivates along one nerve path.
2. On initial infection severly itchy sore and swollen outer vagina lips (vulva?) won't be herpes if no blisters appear on it.
3. On initial infection a fever and chills/sweats come only after lesions appear and does not happen before lesions are present.
4. Can do a swab culture on a blister but best to have a pcr swab on an area that is raw/blistered/cut.
Have a got all this right? Don't want to go in to my doc with wrong info?
One last clarification thanks if poss. During an outbreak do all the lesions appear at once, or do they continue to appear over a few days. Or after some appear, can no more come for a few days and then another bunch come. Does that make sense? sorry can't word it properly. Thanks a lot.
Once I've got these points straight in my head from the expert (you!) then I'm going to have a long confident chat with my doc and get this sorted properly. You've been so helpful thanks!
Grace, I know you'll answer my last post when you get round to it, but just wanted you to know I've managed to get an appoinment with doc in 3 days time so I'm hoping I have this final 'knowledgable info' from you by then. Many many thanks.
Also, do you want me to post back on here when I final figure out what the heck is going on (could be a couple of months), or is it a kind of 'we've helped you now please move over for other people' kinda thing :)
Still hoping you'll take a little bit of final time to answer those 5 questions I have, but in meantime, I have managed to get my actual values from herpeselect. HSV1 was 0.09 and HSV2 was 0.02. I assume if it was a rare case of false negative then the value won't matter. Not like it has to be near the upper limit of negative to be false. If you don't produce antibodies then it can be a low negative too, right.
Can't wait to get your thoughts on those final 5 points, cause then I think I am really really clued up on herpes and have exhausted the merry-go-round of questions that go on in my head. I'm excited that I'm at the end of my 'questioning' journey for herpes. And now it's just a case of swabs and figuring out what else could be going on.
I look forward to getting peace with all this soon. Thanks again for all your help and patience with this :) over the last few weeks. Don't know what I would have done without ya! Look forward to hearing from you soon.
I think at this point you need to just talk to your doctors like grace said. If your provider isn't knowledeable on the subject they should look into it further so they can best advise you.
1. Herpes can appear inside the vaginal and on the cervix to cause a thin discharge, but not often and not with every ob. And if it does, it is impossible for it to be also appearing on the buttocks/thighs as it only reactivates along one nerve path.
Herpes can appear anywhere in the boxer shorts region.
2. On initial infection severly itchy sore and swollen outer vagina lips (vulva?) won't be herpes if no blisters appear on it.
Everyone has inital infections and some vary than others. If you have problems be seen and inform the provider that you are worried about herpes. Using a PCR swab can provide some answers as well if done within 24-48hrs after symptoms are seen.
3. On initial infection a fever and chills/sweats come only after lesions appear and does not happen before lesions are present.
You may run a fear once your body starts to mount an attack on the virus. You're attempt is to try and ensure that what you have doesn't line up with all the symptoms and herpes isn't black and white like that. The body reacts to infections pretty much the same.
4. Can do a swab culture on a blister but best to have a pcr swab on an area that is raw/blistered/cut.
Yes. PCR is far more accurate as it requies the virus to be present on the swab, and not present and alive like a normal culture does.
If you aren't getting the answers you need try paying to post to either Terri or the STD docs to get their thoughts. While we will provide as much info as we can we aren't a sub for your doctor and being tested properly.
Hey, I know this isn't related to herpes but thought I'd post a bit of an update just in case anyone has any idea of any infections that can cause this. I'm assuming herpes doesn't? I'd developed soft fleshy growths in the vagina entrance, and long story, but was told all was ok so didn't worry, but then more came so they did a biopsy to check. Probably wouldn't have bothered if it hadn't been for all the other symptoms I've been getting. Just got results back and showed fibroepithelial polyp. Been told there are benign tumours that occur for no reasons. Obviously I find that hard to believe. These have appeared in my vagina and mouth since this encounter so something in his penis must have triggered them!!!!! Do any specific infections come to mind? Or can they just develop due to the swelling and irritation. I know they aren't dangerous or anything, but it's just another thing that's changed on my body and can't find a great deal of info on them, especially in medhelp as it's usually colon or nasal polyps that are discussed. Thanks.
Just an update if anyone is interested, which I doubt :/ Back to doc to get results of swabs and no yeast or bv detected. Have the option of going on antiviral to see if it helps, as said no other symptoms would cause anything else like this other than herpes 10days after sex with a new partner. Said I must just not have produced enough antibodies or I am one of those people who will never test positive no matter how many tests I take. Doesn't think it's worth the stress to try and get cultures done each time as they so often miss it and could be chasing this for a while so time to make a decision and DO something. Small chance it could be eczema but this wouldn't come on due to a new partner and wouldn't have involved the SEVERE symptoms like the pain and fever type symptoms and discharge. So looks like I have hsv...but without a 'proven' diagnosis, just a 'visual/putting the pieces together' one. Anyone else out there the same?
Initial symptoms- lots of internal pain, painful labia and vagina entrance, discharge, extreme itch, extreme swelling, burning, painful urination, temp, chills, sweats, long open deep cuts on vagina, swollen nodes (and developed polyps)
Recurring symptoms- internal pain, burn, redness, itch, discharge, swollen nodes, cuts/lesions, hot stinging butt before red sore spots appear and itch
Appreciate any thoughts.....
Especially if you've been through the same thing? Anyone got herpes from cultures so you know you def have it, but test negative on blood work?
And out of interest, for those of you with positive cultures do you also have positive blood work too? Just wondering how many times the tests don't add up. Thanks.
Hey DiDiva, I so hear ya. As I said earlier your symptoms come the closest to mine on this forum and out of a similar situation (i.e. Shortly after a new partner). I'm also still experiencing much of the same symptoms like you - constant swelling, pain, itchiness, occasional paper cut which always comes at the wrong time thus also haven't had a culture done. I also have constant lower back stinging/pain, and those symptoms seem to get better one day but then back at it the next. I also get a lot of discharge, which is clear and generally normal looking but it seems to be correlated with my pain - the more pain, the more discharge. I tested for HSV @ 4 months and still negative. Im almost 99% sure I have HSV cause nothing else would cause symptoms like this. At this point I'm waiting for the lesion to come again so that I could get a PCR swab. I think you should do the same. I don't see why the doctor is telling you not to bother with it, I think you will learn your status quicker and if it's negative while still fresh chances are then that it's not HSV symptoms you are experiencing.
I want some sort of closure on this already. I'm thinking of consulting with yet another OB-gyn and possibly an infectious disease specialist. I'm at a loss of what else could be done at this point. I am hearing more and more stories of people not seroconverting until more than 6 months after exposure so I'm starting to think I'm one
of those too.
I think you should try to get a PCR swab of your lesions and go from there. If that's negative repeat a Herpeselect Igg test at 6 months post exposure and if thats negative and you are experiencing symptoms still get a WB. I'm sticking to this plan myself. Keep me posted. I wish you best of luck and a positive resolution of all this soon.
So, to make this short, I was researching online smth that I also attribute to my genital issues, which I initially thought was a lymph node but upon further research (no lymph nodes in buttocks) turns out it's most likely a cyst. I read that these cysts can sometimes be caused by the Staph infection down there, which also causes sores. I'm a bit skeptical of it in my case simply because the onset of this infection was a bit late (12 days or so after intercourse). But I will still check for this just to rule it out. Other things that can also cause painful swelling down there are mycoplasma/ureaplasma genitalium, and group B strep. Im making an appointment to a new gyno, bringing my history with me, along with my whole story and I will urge her to test me for these things. If you haven't been tested you should consider.
Hey, thanks a lot for the reply. I thought everyone would have washed their hands of me by now hee hee. It's a little comforting to know someone else is going through this nightmare. Feel less mad. On good days, when all the symptoms are going, ie the end of an outbreak as I call it, I feel ok, this is it, it won't come back, but then it does and i get depressed and think hsv again. I HAVE SOMETHING FROM THIS GUY, 100% sure, but just need confirmation of hsv. I thought the blood test would have done that, but I've read people discussing with HHH on expert forum that have symptoms and negative test so told it can't be hsv and symptoms don't sound like it anyway....and then reply later with a positive blood test and all of a sudden the doc then says well oh yes the symptoms could be hsv and you def have it. What? Seems like we're told the symptoms aren't hsv if the blood is negative and told the symptoms are hsv if blood is positive. Not much help if you ask me!
I keep changing my mind on what to do with swabs. It is SO hard for me to get to a clinic to do swabs and the cuts don't stay 'fresh' for long enough for me to get there. They won't give me pcr swabs for home, it's just not what they do. And cause of the high posibility of false negative with swabs i feel i could be chasing this for a long time with trying to get in done time and time again never knowing if that was a 'good enough' swab to be accurate negative. So if I give tablets a go and symptoms improve then that's an indication. But the flip side is, if i take the tablets and no lesions appear then although i will think it proves hsv, i still really have to actual prove from a swab. Catch 22 they call it eh!
Thanks for posting the info on other possibilities. Can you please post here if you find anything out from your new doc. I think we gotta stick together and try and figure this out. Of course we may not have the same thing going on, but at least it will really help to know what to ask docs to look for. Thanks again Birka123
Okay so I have started antivirals to see if they help at all. I am lost now. I just need to try and see if it helps rather than waiting months and months with trying to get accurate swabs that still might not be conclusive. Especially after I read LOADS of posts on here about people with false negative blood tests etc etc, so I'm not happy just to believe my result when I'm still having all the symptoms that match up. I was a complete believer in the blood test and thought i would be relieved if mine came back negative, but i wasn't cause i still had all the symptoms. And then when I've seen how many people have got fasle negatives, i don't think i really trust the blood tests. I don't think it's 97% accurate at all in my humble opinion, not that I know loads about it obviously, but just shocked at how many people don't test positive when they've actually got it. My life is a complete mess now and everything has come to a standstill, so I need to do something.
So my question is on dosage. Is it right to take 800mg twice a day for 2 days, then continue on 400mg twice a day? I'll be taking them for two weeks. Will that be enough time to see any difference or does it take a month or two for it to get into your system and start suppressing the virus?
And if a pap smear test was done when herpes was present on the cervix would this pick it up, or is it done on a different swab and different growing culture etc so it wouldn't show herpes even if it was there? Thanks guys. Although people may not agree with what I'm doing (Grace?) I feel I need to do SOMETHING so we'll see if this helps.
Can I just check that 2 days of 800mg twice a day then on to 400mg twice a day is the right thing?
Nervous. Win/win and lose/lose situation. If I feel better on tablets then it's herpes = bad, but good that I can get relief. If I don't feel better on tablets then I don't have herpes = good, but I still won't know what's causing it all.
Hi DiDiva, how are you doing? Just wanted to check in and see if you've started on your Valtrex and if so, have you been feeling better as a result?
I am trying to push along in my diagnosis too, again last weekend came down with a small sore that I couldn't get cultured in time. I swear these things always come on a weekend, a long one too. This coming Monday I'm paying to get a Biokit test. Wonder what that ll show. Then made an appt to the new gyn but did not realize that I'll be having my period then...maybe ill keep it anyway. I will keep you updated. Keep me posted on your happenings as well.
Hey there. Thanks for keeping in touch. Can be a bit lonely having this nightmare!!!!! I'm on acyclovir and after 3 days on it I felt great, like nothing had been wrong. Felt odd cause it'd be so long that i felt like normal me. But was aware this could be a placebo effect so wasn't crossing my fingers, just tried to keep calm and see what happened, cause I obviously had been having periods where things were good anyway before taking tables so could've just been one of those times anyway. Anyways, I am finding it really hard to keep taking my tablets at the right time, and life kicked in a couple of days ago and wasn't around to take my night time tablet and the following morning one and the internal pain etc started again the following day. Now I know this may be unrelated, but now i don't know if symptoms have returned cause I forgot to take 2 tablets or cause it would have happened anyway and tablets weren't doing anything. Will never know. Going to take tablets for another 2 weeks and see what happens.
Good luck with your tests girl! Hope it goes well. Let me know. I know it costs a fortune for all this stuff, but I'd pay twice as much to finally find out what the heck is wrong with me. And to make things worse, I checked internally again and I have loads and loads more polyps, all different shapes and sizes. I know docs say they are fine and not dangerous or anything so nothing needs to be done about them, but I'm like 'heck, what the *&$£? is happening to my body to just keep growing out of control like this. So whatever the infection is I caught from this guy, it's causing me all the symptoms of herpes as well as causing my body to rapidly (and continually) develop polyps.....what is going on.......I want my life back the way it was!!!!!!
Thanks for the update. I dint wanna be too hopeful as far as your pills helping you cause in a way I hope they don't help which would mean you don't have herpes:). Wow, maybe those polyps though are warts? If so they usually go away on their own after some time. But I could see how those could be scary.
I do want my life back as well, I hate how I've been feeling the last 5 months, it's been pure hell. It's funny how you start looking back at the old times when you thought you weren't happy and think "wow, if I could only go back to that time I'd be way happier and more appreciative knowing what I know now". To me at this point its important to know what it is so that at least I can act on it and take control of the symptoms. I'm really depressed by the way, and when it seems like im finally getting over this I'm going back to square one and crying and being upset. Well, keep me posted on how you feel. Goo luck!
Thanks, I was really hoping I'd feel loads worse when i started the pills :) Never thought i'd actually be wishing for cuts and pain etc. Definitely not warts. I had those years and years ago and these are nothing like them. Anyways, i had a biopsy done of one and confirmed polyp, its just that there are loads of them appearing, all different shapes and sizes. Seriously man, it's like they're taking over my frigging vagina entrance. It'll soon be closed over!!!!!
I do the same thing as you and look back saying things were good back in the times that i thought were bad. that's why i'm hoping this isn't herpes and can be cured so i can get back to normal and then use this lesson to make sure i look for the best in life from now on by remembering how i feel now. I too go in circles with it and cry a LOT. I have lost me. I have lost the life I had. People say this is just a skin condition that doesn't define you, but i completely disagree. It changes everything. i have a different relationship with my family and friends now. Look differently at having children. Feel different about sex and partners. Feel massively different about myself and how i view life, decisions i make, how my silly actions can affect so many people now and in the future. it isn't just skin, i feel lots of symptoms which are horrible. Depression is debilitating and tiring which affects all aspects. and the list goes on!
You getting wb? When? Let me know outcome will ya?
so, 'the vast majority of the time' means it CAN and does happen on both sides, which is what I believe, but HHH seems to be very firm in his belief that it is always unilateral with outbreaks. Surely it can't be that hard to determine can it? Have they not done a study to ask patients with herpes to tell doctor, or get confirmed swabs of outbreak, if it is on one or both sides. Anyways......
having them on 2 sides at a time is very much the exception to the rule.
unless someone gets a + lesion culture for herpes on you, you still really have no reason to think herpes is an issue. Oh and yes they have done lots of studies to come up with the unilateral presentation of recurrences. no one is making things up I assure you.
sigh, mistakeguy789 yes I understood that. Vast majority doesn't mean all of the time, therefore it is indeed possible for the odd time for it to appear on both sides. I was wondering if it was proven to be proven that it can't be on both sides or something like that.
Sigh again, grace, I never for a second thought any advice you give was made up, that would just be silly. I just thought it seemed that it may have been inconclusive if outbreaks are bi or unilateral, cause the advice seems to be it is unilateral....but it can also be bilateral. Sorry, was just trying to get it straight in my head. And of course I understand I can't know if I have herpes or not without a culture - I'm fully aware of this as I have been struggling with getting testing for months and months. I have been working EXTREMELY hard to find someone who will see me when needed to get as many cultures as needed....and today I think I finally found a place that will actually help. So hopefully I will actually manage to get a culture next time symptoms come. Can't wait to put this nightmare to bed one way or the other. Thanks again for the info you always provide.
Should have explained. The reason I was asking is cause i've got different info from diff docs. Not getting the same consisitent advice makes this whole things harder.
Also, without testing, a doc told me that if my discharge is clear with a burning itching feeling on the inner part of the vagina and if there was any smell (especially fishy) then i have BV. Period. No ifs or buts. This was just in general chat about diff infections and says you don't even have to swab for it most of the time as it's obvious. Is that true also. Is bv that easy to detect for a doctor, by just looking and smelling (eeewww)?
Just in case anyone is interested, this is what my lips looked like, but not as bad (this happens still, but not as frequent and not as bad). Although at the minute I have a line of little white blisters along the inner edge of my bottom lip on one side and the whole area is red. It's not sore, it just has that metallic taste you know? Nearly cleared up after two days. ( I won't even go into what vaginal symptoms I have going at the minute. Sigh)
This pic of the mouth is not me, just one I saw on the net that resembles my 'suspected herpes' - so not the typical blisters.
Hey guys, so I'm still concerned (or obsessing as some may call it :/ ) over oral and genital herpes. I know yeast can cause itching burning and swelling and redness etc but here's the symptoms I think are different to yeast so why i'm concerned it's more serious like herpes rather than yeast or something else:
-started about 10 days after new partner - oral & genital so know it was infection from him
-massive swelling (outside and inside vagina)
-discharge was loads and thin and clear/milky
-long open very painful lesions
-lymph nodes swollen and very sore
-burning when having a pee
-the most painful throat ever
-sores/red raw on lips
-had fever, chills, sweats and nausea - felt very very ill and sore
-recurs with very itchy and painful spots/blisters on bum and inner thigh as well as vaginal tears and cuts and internal pain (cervix lesions?)
-developed loads of polyps in vagina and mouth (surely a yeast wouldn't do that!!!)
-my body has permanently changed
-been tested for yeast and bacterial and other stds
So questions...yes more questions...
1-Can people take longer than 4 months to develop antibodies? (think I'll try and retest)
2-Read that docs think there is some link to polyps and herpes viruses in general, but this was vets with animals, lol, does anyone know of any human links? The continuous development of polyps worry me. but doc says polyps are harmless and not to worry. but my body is changing and growing stuff!!!!! Do viruses cause polyps on vagina and inside mouth and on lips?
3-I don't think yeast causes swollen glands, or can severe yeast (and recurring yeast infections) cause swollen glands?
4-Can you get a very sore throat with large neck glands and lip ulcers due to yeast or anything else from oral sex, or it is just due to viral infections?
5-If some spots on buttocks are more like bug bites (which I've heard herpes swabs being diagnosed from), so don't have fluid in them am I right in saying there is no point driving miles and miles to get a culture swab done as this needs fluid, and it's pcr swabs that are ok for non fluid bumps?
As you can tell, I convince myself that it was just yeast and the docs missed it on a swab and that I don't have herpes cause of the negative IGG but then I think of all the above points and know something infected my body from all those horrible things mentioned. :( Rollercoster ride of negative IGG vs horrible symptoms that recur since. I go from upset to panic to angry to sad to dispair to relief to pain, to start it all again... so I kinda need to sort this and put it to bed!!!!!!!
If anyone feels like helping/sharing that would be great :)
Hey guys, I know a few of you will be tired of me not letting herpes go, but regardless if you think i'm crazy or not, I really have just asked some ligit questions above, such as swabbing info, yeast causing swollen glands and polyp link (just saw report on nasal polyps linking hsv1 and ebv to polyp?!?) Anyone got knowledge on the questions above?
I have been told here that you can not get genital symptoms from ebv/mono but then I have read some advice given to others (by Grace) stating that you can get vaginal lesions etc from mono. Can someone also clarify this info too please. Can you be infected orally and genitally with ebv/mono? Thanks.
you can get genital lesions from being infected with mono. it's well stated in the literature.
sorry didiva but at this point, unless you get a + lesion culture for herpes, nothing really for me to comment much on. I've answered many, many questions for you and at this point, really nothing more I can add about your own situation unless you do get a lesion culture. I know it's frustrating not having clear answers but really at this point not much more I can add.
I have been back to the gyn with symptoms and have been diagnosed with genital herpes and start on acyclovir twice a day for suppressive because my outbreaks are so often. I am obviously very upset that I have this, but in a way I'm glad I finally know and can hopefully start getting some relief from the medication. I demanded that they check for yeast and bacteria too, because of all the advice I was given here, they weren't going to at all cause they said it didn't look that there was anything that looked like that and it wasn't needed, but I insisted, and turns out I do have yeast too at the minute, so I'm glad of all the advice here or I wouldn't have known to push for it. Thanks everyone for putting up with me over the last while. I'll report back in a few weeks to let you know if the medication is helping. I never thought I'd be glad to hear that I have herpes, but I'm just glad it's all over. Looking forward to not wondering 'do i, don't i' constantly! Thanks again guys. And sorry if I've been a pain, I was just desperate to know.
Not sure if it is 1 or 2 yet. I'll post if I find out. But my guess is 2 cause I didn't receive oral. Looking forward to these tablets kicking in so I can start getting my life back. Fingers crossed. Was kinda relieved yesterday that it was all over but it's starting to sink in today that I have herpes. Well, suppose I better get ready to open the next chapter of my life!
yeah, that's right, visually diagnosed and testing done was a swab. Here is exactly what happened to clear up any confusion (I was trying to keep posts short to avoided any further knuckle rapping!) Been told i have herpes by the top gyn who deals with herpes and stds etc in my area and waiting for swab to come back to tell what type, but he did say not to be surprised if it's negative because it was a small area that had started to heal but was def sure it was herpes. Then asked me the history and other symptoms which said clarified it all. 'nothing else would cause these exact symptoms and within this timeframe' were his words. Pretty much what I had thought. Put me on tablets to see if it helps and will go back for follow up in a couple of months. I mentioned what you had said about not taking tablets and keep going in for swabs if this one was negative but said that was up to me, he said cause of the horrible time I've had with symptoms it would do no harm to put me on tablets for a while to try and get some break from it all and if this swab is negative then to come off the tablets again in a couple of months if i wanted to try and find out the type. But of course my understanding is that I could still have outbreaks on tablets so will go and get a swab taken anyway if needed. He said that polyps are not usually linked to herpes but couldn't rule it out and said it is not the norm to have yeast infections with herpes outbreaks, so not to expect it with every OB and it's just a coincidence this time - would you agree with that? (he wasn't even gonna test for it as he saw no signs but I insisted from what you'd told me in the past and the test said I have yeast too this time! -previous swabs negative)
At this point I've two questions (if I'm allowed to ask them?) Will the suppressive dose help clear up an outbreak or does it have no affect at all on it and the outbreak will act like you are not taking antivirals at all. And if someone has say 15 outbreaks a year will tablets help drastically reduce that to say 3 or because they get frequent outbreak will the tablets only help reduce it to like 10?
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.
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!
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.
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!
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 :(
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.
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 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.
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.
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.
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.
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.
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.
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...
...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.