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Avatar universal

HERPIES QUESTION

I have been having burning,itching, and pain, with prickly feeling in the vagina area since Dec 3 2009, it comes and go, over the past several months it wasn't as bad , my question is , I was tested for Herpes 1 and 2 by means of blood work when I was on vacation in Florida, it came back positive, but I was also had swap tests done as well that came back Negative , I have been married for 22 years to the same man, he was tested when we came home from vacation, he was completly negative of Herpes 2 (Genatial Herpies) but positive for Cold sore Herpes , I was perscribed Valtrex in Florida for a 10 day treatment , it didn't clear anything up, also to mention I had a cold sore when I was tested for Herpes by blood work. I have seen at least 20 doctors 3 GYN'S since all this started, My family doctor also did a swap test and told me I don't have Herpes, I asked him to retest me by blood test , he said theres no point because the Herpes 1 and Herpes 2 the DNA are the same. So, I am confused do I have Herpes (Genital Herpes) with no visual signs but just having all the other symptons like pain, itch etc...Also, to mention whne I have my period and signs of having my period it goes away as if I never had any symptons at all , I feel fantastic, and I never ever had any pain when I go pee at any time. I am 47 years of age, peri-mentopausual , I was tested for ever other STD , all negative, my husband and myself, I was checked for UTI , Yeast infection, every test out there it all came back negative, my Estrogen, Cortisol, Testosturm , progrestrogen , all came back perfectly normal, pap test normal. Whenn I have itmancy it is a little tight on entry , but its fine after , the next day just a bit sore, I try to avoid it as much as possible, because I am scared that the pain will start up again, sometimes I go as long as 7 -8 days of pain free, just a little irritation but bareable .Any suggestions, do I have Herpes ? or something else.
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101028 tn?1419603004
oH I'm so sorry - I was tired and read conn's syndrome as chrohn's - didn't mean to confuse you and give you more work!!!   I started reading your reply thinking, wait, she's confused, she told me she has chrohn's, nope, it's me confused...lol.  My eyes wanted to see what they deal with regularly I guess!


I wish I had more to add but at this point, just keep following up on this with your gyn regularly to try to get to the bottom of things.  


grace







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Avatar universal
Hi Grace,

     Thank you for the advice again, I googled symptons of Cronns diease , I don't have any abdominal pains or diahrera , or problems with my bowls, si I am not a Doctor but I don't think it is that , but I will ask my doctor do a test on it if he already hasn't, I already had an ultra sound test , a vagianl/ pelvic ultra sounfd test , as well the Cat Scan was done on my Adrenal and Pelvic area , I believe that also includes the adominal area as well. As far as Vulvodynia, the symptons from what I read said it doesn't include Itchness, also when I do get the nerve to have intercourse sometimes its fine , just a little sore the next day , sometimes bearable, my doctor said its because I haven't been doing it very often thats why it gets a little tight on entry. Sorry for the graphic details. I asked my doctor for an antidepressant a mild one so I can still function during the day , I am ususally very active and always been Hyper in a good way, so I want something very mild, at this time I try not to take anything at all during the daytime, just at night. I know that Clonozopam are very addictive , I am really dependant on them , until these symptons stop or they diagnous them so that I can feel more at ease , I feel I need them. Do you believe stress and Anxiety can truly cause these symptons? , thats what my doctor keeps telling me, sometimes I think he can be right , but as I said before what changes when I am on my period. What were you diagnoused with a few years ago? and how do you cope. I know its not Vulvo Vestibullis , not quite sure of the spelling , cause I have no pain to touch, more irritaion then anything , even when I apply Sudocream whuich is for babies diaper rash it tingles , so its still has irritation, even when I apply any lubracation especially around my inner Libia. I really look forward hearing from you with all your suggestions, it gives me more questions to ask my doctor to rule possiabilities out. Thank you. Everything I gooled on the internet , I have a bit of each symptons but not all , so not sure if it rules out all the suggestions it could be. As far as Estrogens , I cannot take orally because I had a blood clot in my pelvic area with my first born at 17 years of age. Any other suggestions? Thanks a million , you do give me some hope. Thanks again. As far as Gluten diet and Wheat, I try to avoid, I am eating mostly Chicken, I am off the sweets, I try to avoid Wheat , but not knowledgeable of what a glutin free diet is and I know there is Wheat bread , thats the most I know off . Do I need to see an Allegist for that?

Sincerely Laura
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101028 tn?1419603004
you can have genital issues from chrohn's too.  

also wheat /gluten allergies can cause issues too .do you by chance also have any mouth issues going on?

I had over a year of non-stop genital issues a few years back. Finally after a year, a provider did a biopsy and we found out what was really going on.  No magic pills to make it all better quickly but at least it gave us a path to go down to try to make things more bareable. sometimes it just totally sucks to be female. You already have had more than your fair share of bad luck healthwise but hopefully you can get answers to this at some point soon and start a treatment that makes things more "normal" for you.  

Better pills for anxiety/stress/sleeplessness than clonapin to be honest.

grace
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Avatar universal
Hi Grace,

    Thank you, for your advice , as I said to Mistakeguy789 all your insight and advice really helps me, I feel that someone is listening to me, as for my Dr. he has taken swaps , cultures , blood work , all negative, as I told him it has to be something , not just symptonmatic stress that could cause all this , cause if thats the case why does it clear up on my period, I believe its Hormonal as well, my dr. said my hormones are normal , tell my body that. I am gng to request to see a urogynecologists , are they vulvo Drs. , he said he is gng to wait to see when my test results come back to see what direction he is gng to apply next, he promised me he's not gng to give up on me, he even called me in Florida to see if I was okay , because I flew back from Florida to see him in January because of my symptons. I pray there will something that will come back with these results so we can address it , do you know if you can have Rhumetid Arthritis in the Vigina ? or if my test results comes back showing I have inflamation is it curable? I get nervous , but I want an answer. I suggested seeing a Homopathic , my Dr said its complicated because I had Conns Syndrome ,hyperaldosteronism , and called Adrenal Adenomas , that was Magliant ,it was so rare that when I finally tracked down my medical results a couple of weeks ago I was shocked as so was the Endrologist , it was so rare that after removal of my Adrenal Cortex I was suppose to only live for 5 years,(P.S. theres another name as to what I had , but I filed my records ) and upon surgury it was only 60% chance of survival during surgury. I wasn't aware of aany of this apparently I had a tumor larger then a grapefruit sitting on my Adrenal Cortex while I was pregnat for my second daughter that was when I was 25 years old in 1985, but they only decided to remove it after I had a stroke, High Blood Pressure , and extreamly low potassium , they said I was close to death then that was in 1989. So, my family doctor sent sent me for a cat scan , and I had all the tests done to be sure taht my other Adrenal is functioning , as I learned the Adrenal Cortex plays an important role in your Cortisol, stress hormone as well your Estrogen when your Menopausaual , all those tests came back normal, they said I am a text book case . So, I am starting to believe even though my tests for my hormones come back normal , I still believe its still something affilated with it. Your responses from both of you means alot , it helps me not to give up, as I said I just want to take enough pills to never wake up again.


    
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101028 tn?1419603004
could be hormonally linked or it could be that when you have your period, the blood is lubing things up and making you feel better. so hard to tell sometimes. I'd still look for a vulvodynia specialist in your area if you can find one and get a consult to them.  they deal with all issues related to genital pain in us gals. also urogynecologists are also often more helpful than regular gyn's are too.

honestly, I don't know much about how ER's work in canada but in the US, they are not the places you want to be going for genital pain issues. they are terrific for broken bones and heart attacks, gyn issues are not their specialty and pretty much a waste of your time and money.  

grace
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Avatar universal
Hi Grace,

     I was tested by blood work only in Florida, here in Canada , I was tested by swaps , all came back negative , I googled abt vulvo dynia , I don't have all the symptons , I was tested for vestibulitis syndrome ,they swaped me with a q-tip , I had no pain that they can touch, vulvodynia it doesnt hurt when I am sexually active , only a bit sore after sometimes flares up with burning. It has been bearable for the past while, especially when I am on ,y period ,I feel fantastic normal again, my hormones was tested they all came back normal , my estrogen , progestrogen, testoterm all in normal range , I was on the premarin cream for almost 8 weeks, I ended up in the Emergency with chronic pain and burning again, the dr examined me and told me there was a large clump of premarin cream discharge from my vigina , my family dr said to stop taking it , because my estrogen was normal , the nurse told me she thought it was a little high.I just got back from seeing my family dr again , I brought some info I found on your web site for my dr to have me tested for, tests for inflammtion in my body , esr, pv, crp, anaemic tests , RF , and ana test , I hope there is something they can find in these tests that explains whats going on with me. How can these symptons keep coming and going, this week was really difficult , I had the chronic pain I had in Florida , I was bed ridden for 2 days with the extreme pain and burning, I had taken codinne/Tynol 3 , it didn't work, when I went to Emergency the doctor said it could be auto immune Artritis , without any tests. My family dr said because when I take clonozpam which is for stress and anxiety , he feels my symptons are from stress because when I take clonozpam it calms done, but I only take it at night before bed , sometime I take 3-4 its 0.5 mg , I told him it settles down because I fall asleep , he said they are for stress the clonozapam. I am so confused, my symptons stop just before my period and on my period , then why is that after my period it flares up again.
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101028 tn?1419603004
ok I see you had a blood test in florida done. those are the results I need to see. thanks!
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101028 tn?1419603004
I have read that and can tell you without a doubt, what all is going on , is not all due to herpes. Herpes will not cause you non-stop issues like this especially since if you really do have hsv2, it's not a newly acquired infection for you. Your husband tested negative for hsv2 so it's something you would've had to have had prior to meeting him, if indeed you have it.

So what test was originally hsv2+?  Was that a blood test or a lesion culture of active symptoms?  I was a little unclear about that from your posts but perhaps it's just too early in the morning for me to realize you said what test it was.  

also google vulvodynia and vestibulitis syndrome - sounds pretty much like what you've had going on.  Unfortunately those are just fancy words for pain in your genital area and don't have a magic pill to take to make them better :(    Perhaps though reading the info on them, you'll get a "ah ha" moment and find something that might be contributing to your symptoms though certainly changes in hormones can cause a lot of things too.   Are they also testing you for bacterial and yeast infections vaginally when you are seen?  Not just visually looking at you, sending off specimens to the lab or looking at them themselves under the  microscope?

Are you still using the topical premarin? It takes up to 3 months to make a real difference and it sounds like you were only using it a few days as of your feb post?

If you can gather up the address's of the clinics you were seen at in florida, your provider can fax them requests for all the studies they did and such and have them sent to be in your file too.  

grace
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Avatar universal
I also had written a question regarding this systom under womens health, under the name unexplainable back in February with more details how this all started , if you care to read up on it . Thnak s
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Avatar universal
Thank you very much, you ae very knowledgable, you gave me more explanination then most doctors have. As for my Family Doctor he is amazing, he knows that I am having severe anxiety attaacks and stressed out alot that every time I bring up about Herpes he tells me thats one thing I don't have to concern myself about , he did tell me that if the blood test I did in Florida was positive it can be Dormant , its an antibodies in my immune system, I just want answers , I cry every day and every night becuause I want answers, sometimes I wish they just tell me its Herpes so I have an answer, and sometimes I feel my Family Doctor just don't want to tell me anything more on this subject about Herpes because its one lesss thing I should stress myself over. I have to see if I can track that Doctor down in Florida , as I mentioned I seen just over 10 Doctors alone in Florida including the Emergency , the pain was so unbearable it was like they put my Vigina on a stove and let it there then threw acid ontop of it, I was bed ridden for days , even when I walked it got worse. Since I came home to Canda in March and since April it seems to settle down somewhat , a little more bearable until 4 days ago the pain was just like what I was experiencing in Florida, I am going to my Doctors again today he was away for a week , thank you for a peace of mind , its nice to have someone to talk to about this. I am at my witts end, sometimes I just want to take more then enough medication so I don't have to wake up with this again.
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1174003 tn?1308160819
Lets take this one step at a time here.

Testing:  There are several different tests out there for HSV.  In the blood work testing there is various tests but the basic two we see here are Old style and the new more accurate testing.  The old style typically done are IgM which there is a post in my journal describing how worthless it is.  The IgG (Western Blot which is a test run here in the US is like the IgG but more accurate and considered the Gold standard in HSV testing) blood test is the most reliable when a person wants to be tested with no active sores etc to be seen and cultured or PCR (More of this down below).  The IgG test comes with some values and knowing those values can help someone that is trained to see if they are possibly in a range that could be a false positive. Not knowing your results nor being trained in test reading I can't tell this is your case but Grace who is trained can give you an idea.  Call the doctors office which did your testing and request that the results be sent to you or read over the phone.  If they were done at a lab like Quest you can request the results.  There is a regulation here in the US called HIPPA that they have to comply with and will require you to sign some documents to get the paperwork.  I think a few states don't let labs give it to patients but I don't know that for fact.  Start with the doctor office and work towards the lab next if need be.  

The other testing which is accurate is the culture testing and the PCR test.  The culture test does have a high false negative rate.  This isn't that the test is bad per se but requires the virus to live during transport.  The PCR test which is the best in a swab test doesn't require the virus to be alive but to be present on the swab.  The PCR is looking for the virus DNA and only needs a small amount to be present. PCR in a swab test is the best way to go.  

Since I just spoke of PCR and DNA lets look at your doctors response.  While I am not a doctor (nor do I play one on T.V or stay in a Motel 8) I will tell you that he is right but also wrong.  The virus does share about half the same DNA.  They are though two different viruses.  The blood work test I mentioned above aren't looking for virus DNA but for the anitbody response your immune system makes.  This is called IgG antibodies.  IgM which is an antibody can be triggered by HSV 1 or 2 but it isn't type specific (tells you if you have HSV-1 or HSV-2).  

With all of that being said.  The swab test has to pick up the virus and the virus has to be active for you to test positive on Culture or PCR.  If there is no virus there is no result.  Well HSV isn't always active on the skin.  It hides like a coward does and stays in the nerves.  So you can test over and over and over and miss HSV unless you have a lesion present that they can swab.  In which case you need to be seen in 24-48 hours after it appears.  

Now lets discuss the burning and urinating.  These are common more in females then males.  W omen's initial infection typically is a little worse off for them compared to males.  However, people can go without having these bad breakouts and have a mild one.  You may not have had a sore in the area where the urine comes out.  Typically the burning is because of the salt in our urine and the open wounds.  If you don't have that in that area you won't have the burning.  That is not a automatic you have HSV sigh.

Alright now lets discuss HSV a little more.  HSV is a virus that infects either site oral or genital and either type can infect either site.  Notably HSV-2 is rare in Oral cases but is there. Commonly HSV-1 is found to be Oral.  We get it from that big kiss from auntie as a baby and or the kiss with the hot guy during your prom.  It happens and you aren't alone about 50% of the adult population has HSV-1 oral cold sores.  

HSV-1 can and is found in the genital location.  However, its not its best area so for some reason it is not as active in the genital location in most people.  Remember that HSV is a complex virus and more and more is being learned about it year after year.  What you refer to as no symptoms or signs is what is called asymptomatic shedding (shedding for short).  This is when the virus is found where there is no signs of it.  But it can infect.  This is typically how HSV-1 is passed to the genital location on some people.  

Some things that stick out to me.  You are being swabbed during this burning session.  If they are active herpes it should be typically seen on the culture test.  You may want to see if they will do a PCR test.  Have you looked into discussing what is going on with a Dermatologist?  They are the skin experts.  What test was done on your husband?  

Being that you are in Canada.  Testing for IgG is a little difficult.  There is a regular poster here Ottmar that has a post on his general about the private labs that do the IgG testing for you but you have to I believe pay out of pocket.

Knowing what tests where done and those results will help us to help you as well.  See what information you can get.  We will get through this together.  Just take a few deep breathes.  Given the symptoms and how long they have lasted I doubt this is herpes in all honesty.  
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Avatar universal
I am not sure what test was provided, when they did the test in Florida when I was vacationing there . I wasn't aware you can be tested by blood work only , even though you have no lessions, sores etc... What I understand is taht they have to do a swap test to be accurate , also as I mentioned I NEVER have any problems urinating , and the burning is gone when I am on my period. The GYN that did the blood work did not provide me with any other resulkts other then telling me I was positive for both Herpes 1 and Herpes 2 , I was in shock and stressed out over these results , I asked were they 100% sure that was my problem I was having nd she said yes I almost ended my 26 marriage because of this. I then flew back to Canada to my Family Doctor ,I requested my Family Doctor to request for the results he said it wasn't much point to it , he examined me as well as other doctors and took swap tests and asured me it wasn't Herpes I was experiencing . I am desperate of answers, I asked him to do the blood test again , he refused and said it wasn't much point to it because the DNA are identical , but he did test my husband by blood work and said he was positive for only cold sore Herpes 1 as so was I . When I read information about Herpes I read you can have Herpes without visable signs , so I get confused do that mean I am having a break out because I am burning and Itching and in pain with NO lessions, sores , blissters etc.... And if so then why do my husband test is negative , we have been together for 26 years . At this point I am desperatly seeking answers as to why I am having these symptoms , I am so stressed and depressed about all of this because I can't seem to get answers from the Doctors , they don't know whats causing it.So, I keep going back to the blood test results asking myself over and over again is it Herpes without visable signs, but just the pain, itchy , soreness, I was in the Emergency again last night because of the pain again they examined me and again no signs of anything , it all looks normal, looking normal and feeling normal are defiantely too different results. Thank you for your response, I appreciate it.
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1174003 tn?1308160819
Herpes doesn't last longer then 3 weeks on an initial infection.  When the person as future outbreaks they typically last between 7-10 days.  Then it typically goes away.  You wouldn't experience all the symptoms continuously and only get a break for a week.

Can you provide grace with the numbers on your test and what test was preformed?  Was this a IgM or IgG test?  IgM testing is worthless.  If you have a history of cold sores you will have (most likely) HSV-1 come back positive.  Grace will need the numbers IE: HSV-1 IGG 2.10 HSV-2 IGG 4.32.  
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