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update and onto the next phase of "H"


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hello "H" friends!

 

back in October i had posted about being new to the whole "H" scene. i had one type of blood test done by my family Dr and that blood test was basically a flop. the results on that test read :

"Evidence of past infection with HSV. This assay does not distinguish between antibody to HSV 1 or 2".

 

see the thing is, here in Canada, they don't have the same type of IgG testing available as they do in the States. on November 1st, i requested to have an ANTIBODY specific blood test done and when i finally got the results back 20 days later, the results read as follows:

"HERPES TYPE 1 / 2 SEROLOGICAL TYPING

Positive for antibody to HSV-1. Negative for antibody to HSV-2. Evidence of infection with HSV-1. Seroconversion to HSV-2 may take several weeks. Suggest repeat testing in 4-6 weeks if early infection is suspected".

 

so, keeping the seroconversion in mind, i waited until December 30th, which would mark 16 weeks since last sexual exposure and i had the blood test repeated. results were the exact same again:

"HERPES TYPE 1 / 2 SEROLOGICAL TYPING

Positive for antibody to HSV-1. Negative for antibody to HSV-2. Evidence of infection with HSV-1. Seroconversion to HSV-2 may take several weeks. Suggest repeat testing in 4-6 weeks if early infection is suspected".

 

i did have itching sensations in my armpits and chest, those have calmed down on their own, but the issue that i am trying to deal with now is a burning sensation in my genital region that just won't go away. i don't know if it is nerve damage due to herpes or not, but it is also accompanied by a feeling of raw, exposed skin. i guess the idea of sandpaper aggressively rubbed on skin would be a good comparison.

when i do the ol' nether region mirror check to see if there is something there, sure enough there is nothing to see.

i GET that some of this stuff can be stress related, and some of it will subside, but i can't help but feel that this is caused by "H". and because none of this existed for me before my bout of BV in AUG and my initial OB in September what else could it be tied to? i have HSV-1 running through my body, i get that, but is this normal to be having this kind of "stuff" ongoing for this long?? i have been tested for Syphilis, Gonorrhea, Trich, HIV, and retested for BV. ALL NEGATIVE. as per Dr advice, i have used Boric Acid capsules to try to get rid of the chronic yeast infection that i seem to now have and although the Boric Acid helped for a short period of time, the discharge is back. woot woot!

 

i have asked my family Dr about it and i got the proverbial "you'll be fine" speech.

two other walk in clinic Dr's have looked at me like i had a second head when i tried to talk to them about it and i'm sick of people (Dr's) telling me that it's all in my head. ummm, no, it's all in my crotch! lol

 

any insight out there? i just want to feel as close to normal as i can again. i wish i could reclaim the little bit of me that was extinguished the day those blisters appeared, but i know that won't happen.

 

i have read a bit about "Vulvodynia" and wondered if anyone else has A) had any similar symptoms with either GHSV-1 or GHSV-2 or B) any input on anything to alleviate what i have described as a burning sensation.

 

for the record ** i'm not taking any anti-viral meds **

 

 

thank you all!!

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Ok, you have HSV1. So does about 80% of the population. That's no big deal. You DO NOT have HSV2. Your blood tests confirm that. There's no need for you to do any more blood testing as you are beyond the window periods, and no other illness or disease will affect that or slow down seroconversion and the production of HSV antibodies.

 

What you haven't confirmed is whether you have HSV1 orally or genitally. Did you get cold sores as a kid? If you did, there is no way you have it genitally. It's just not medically possible to reacquire HSV1 genitally as an adult. The possibility of that happening is in the millions to one range. It's that rare.

 

I strongly suspect your vaginal issues are not in any way related to HSV. In fact, all of the issues you describe having sound more anxiety and stress related than they do to anything caused by HSV. IF you develop a blister of some type which can be swabbed, then I would recommend you have it tested to determine if it is caused by HSV.

 

If you are still concerned, don't go to your family doctor. Go to a gynecologist who has expertise in lady parts. Going to a family doctor to confirm genital herpes is a lot like going to an electrician to fix the plumbing; they might know a thing or two about it, but they're not specialists at fixing the pipes.

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hi Herry!

first, thanks for the plumbing reference. humor is good! :)

here is the background in more detail:

August 14 i had what appeared to be BV and got prescription for it. went back again as symptoms hadn't gone away after first round of meds. fast forward to Sept 9 and i was in pain in my lower region. two small bumps in the crease between my right thigh and outer vaginal region. went to Dr office, got SWAB done on same day. the cotton tip from the SWAB burst one of the blisters so i had hoped that this would be a good catch to be sent off to be assessed. prescription for Valtrex given both pill and ointment form. Sept 10 more pain in same region. no pain during urination. no swollen lymph nodes in groin or neck, no flu like symptoms like so many other people talk about.

Sept 26 i went back and the Dr called the CDC and was told that the swab presented as negative for anything. i understand that these findings can happen quite often so it didn't surprise me that it listed as negative. i have been given two brand new, still in package swabs that are at the ready, should any new bumps reappear.

 

both parents and sister have cold sores now and again. i have never had one in my life, but i also understand that one can have the virus without ever showing any symptoms.

my ex fiance had cold sores... we split in Sept of 2012

 

this is where i also feel like i can't move forward because of the negative swab results. i could clearly have HSV-1 ORALLY and it may have been there for years and years without any symptoms, but when i presented with the bumps, turned blisters in the genital region, i cannot help but believe that the HSV-1 strain is indeed GHSV-1.

 

i have a referral in the works for a new OB/Gyn and hoping to get word of when i can get in to see her. ever feel like your life is on hold....? ;)

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I agree with herry that some of your symptoms seem to be stress related more than anything else. I get stress hives frequently and it's the most annoying thing ever...I get them weekly while my herpes just lays dormant go figure.

 

Also going to a different doctor will make a world of differrnce. During my discovery phase I saw three different doctors. The first said it looked like herpes but told me I would have to wait until the free clinic was open four days from then to get a clear diagnosis and medication (still very VERY upset about that whole ordeal. I was crying and obviously in pain and this woman told me to wait DAYS for the hospitals free clinic to open up. No acyclovir no nothing ugh!!!!!) So the next day I went to planned parenthood and that doctor was waaaaay more understanding of the emotional toll herpes takes on people. She wouldn't continue until I had stopped crying and seemed to somewhat understand I wasn't dying. Then I was able to get in with my actual gyn and she was so sweet I can't even begin to explain hoe amazing that experience was. I had done my research at that point so she just sat there and said I was on the right path and to make sure I keep this positive attitude because I was healthy she gave me a clean bill of health she told me that the next part of my journey was going to be all emotional but I could overcome it if I stayed strong.

 

Again stay calm and find a doctor who knows what they're talking about. All doctors will agree its no big deal but you need to find one that understands there's more to patients than their symptoms.

 

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BV is a common condition. The vagina is a delicate little flower with a serious attitude problem. One little change in ph, stress levels, or the bacterial balance and "BOOM!" the playground is closed for a week. Eat some probiotics, avoid douching, get some sleep, relax, and it'll get back to normal on its own. Keep in mind the use of antibiotics to treat BV can actually make it worse.

 

Your bumps could have been everything from foliculitis to a simple pimple. The swab came back negative for HSV, so I would tend to trust that.

 

Get off Google. I can read through your notes and see you're going through Google. Don't do it. Google is like an evil clown. Google will convince you that an ingrown hair is really the first sign of leprosy. I don't think your doctor called the CDC. Herpes is annoying, but it's not something the CDC is going to get overly concerned with. The only exception is when Joe Francis or the gals from ASU go on Spring Break, in which case the folks at the CDC call that "Spring Outbreak." That usually occurs about 4-6 weeks after all the girls have gone home.

 

Your parents and sister have cold sores? Mine too. Yes, you can have HSV1 without ever having a symptom. In fact, I'm willing to bet you got it as a kid, had such mild symptoms you never noticed, and you're just fine. Is it possible you acquired it during oral sex from your ex as an adult? Of course, but stop stressing about it. If you did, GHSV1 might show up once or twice and then it tends to become a silent roommate that most people never see again. Ever.

 

You can't move forward because of one word. Gooooogle....goooooo gul....googul, googul, googul dunanah. It's like this shark that's chomping at your mind trying to convince you that there's blood in the water. There isn't. You're fine.

 

Go have a glass of wine. Take a bubble bath. Go for a walk. Read a book. Watch a movie. Stop stressing.

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hi Orngpeelmafia

thank you for adding your input! it feels some days as though the doctors don't seem too worried about "H" because it isn't life threatening. i get that, but it is definitely life ALTERING. agreed that it's beneficial to find a doctor that understands and that's what i'm hoping to do with this new OB/Gyn. my family doctor is a great man, but he'll be retiring soon.

it's great that you were able to have some research done and she backed you on it. i truly envy you in that regard.

i went back to the walk in clinic Dr to get my final blood work results and he told me that i was thinking far too much, and that i was looking at this from an academic point of view. he then told me that i was acting out of line by asking the question that i was. ummm, wow. i have been reading up on this stuff since shortly after the blisters appeared as i'm the kind of person that is interested in "figuring it out and getting on with it"... so to speak. so when i asked him if i should be on the anti-viral meds to see if that would help to relieve some of this lower region burning he came back with telling me i was trying to be some sort of medical professional. i don't think i will be seeing him again anytime soon. :(

so much for being pro active!! lol

 

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Herry,

again, thank you for making me laugh!!! well played sir!

the bit about the "Gooooogle....goooooo gul....googul, googul, googul dunanah" killed me!

 

well how about this then...

how do i go about telling someone that i have the HSV-1 virus?

a potential new partner enters my life and then when i have "the talk" with them do i tell them that i have it orally or genitally?

this is my double edged sword as i get the critical importance of telling new partners as they have a right to know.

 

 

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How do you tell someone you get cold sores. Let's see, I think I saw you were 39, right?

 

We're old enough that we can try this approach. I generally just say "Hi, I'm Herry. I get cold sores. Vouley vous couches avec mois?" It's a great ice breaker and the talk is out of the way.

 

Seriously though, HSV1 is so common in the late 30's that it's far from an issue. You're making a mountain out of a molehill and most people won't pay it a second thought.

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@sniper I have insight on the vulvodynia issue. At 17, BEFORE H, I was diagnosed with interstitial cystitis, vulvar vestibulitis, and a couple other non std/sti related issues. That being said, vulvar vestibulitis is a type of vulvodynia. Vulvodynia is just pain in the vulva. It's broad term for pain of the vulva. Basically, mine was pain with intercourse. I still have this issue as it doesn't go away. Basically anything inserted into my hole causes a burnin pain. I use a cream sometimes but I would get shots in the nerves or my vulva. Those truly helped. They think my vulvar vestibulitis was caused by the IC, which messed everything up down there. I've had it since 17, then at 23 got HSV 1 genitally, so as I am used to female problems, HSV was a lot harder to cope with. My point is, the burning sensation does not necessarily have to do with HSV as I had burnig issues before I ever had it. There are creams out there that contain lidocaine that can help with the burning. See a pelvic pain specialist to get help with these issues, my OBGYN recommended me to one when I was 17 and tested negative for all stds and a urine culture kept coming back negative for a bladder infection. Hope this helps. The two are probably not connected.

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And FYI the symptoms you describe, sandpaper, raw... Exactly what vulvar vestibulitis feels like. Mine also feels like hot and stingy. I say it feels like fire. Mine varies, sometimes it's really bad after sex sometimes it's not. Typically, once a guy gets it in i it dont hurt as much, but that initial slip in hurts like a mofo. Mine don't bother me unless something is going in the hole. Sorry if that's graphic but It may help so you understand and may relate. A qtip test is typically how it's diagnosed. Basically they push on nerves at the opening of the vulva with a qtip and you rate the pain intensity. No blood test or anything will tell you if you have it. There are all kinds of treatments, the only thing I found that helped me was the shots in the vulva. They say some medications (typically anti seizure medicines) help. The thought is the medicines calm down the nerves and help to stop sending the pain signal to the brain. It did not help me. I recommend a lidocaine cream (didn't do a lot for me and kind of stings when I use it, but some people it really helps). Try to see a pelvic pain doc if you can. If it is vulvar vestibulitis I got lots of info and recommendations, feel free to message me. Also, if you are sexually active, a cool bath or cold rag on the area after intercourse feels awesome. :) good luck.

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@thisisgoingtobeokay

thank you for your input regarding the Vulvodynia. i will be honest in stating that i have endometriosis and have been living with it for roughly 16 years, finally being diagnosed as having it in 2003. i can relate to the the pain factor on an internal basis for sure. i have had 3 laparoscopic surgeries to remove / cauterize the cysts that develop, but it's only a temporary fix and the pain comes back.

this external burning is all new to me and that's why i put this "bat signal" up to see if anyone else was experiencing such physical sensations. i know it isn't something that is necessarily easy to diagnose, but after reading your input, it certainly gives me some information to present to the new doctor i hope to see. i truly appreciate your input as this helps to make me feel less alone :)

 

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sniperchick..

 

You got a lot of good info so far - I'm just going to summarize what has been said..

 

1) Get thee to a REAL OBGYN (family Dr's and Clinics are horridly out of date where Herpes is considered... you state you have a Dr who is about to retire so even more likely he's out of date (because as you said, it's not life threatening and Family Dr's are the front line for EVERYTHING and so they will only be able to study up on so much...so they will concentrate on things like cancer, diabetes, etc) ... and the Clinician is totally out of line and I'd actually register a complaint with the company. An OBGYN will know if you need to see the pelvic pain Dr for more tests.

 

2) It certainly seems that you have had other issues that might have caused a Vulvodynia or similar issue..... but until you can get to the OBGYN just try to remain as calm as you can given the situation. You may wanna try Epsom Salts baths to see if it soothes things.

 

3) Disclosing GHSV1: Simplest way is to say "You know the cold sores people get on their lip? I get them down there. So if you've had a cold sore, you can't get it. If you are not sure, then we need to be careful ... HSV1 doesn't shed much but I can take suppressive meds and/or we can use condoms until you get tested. 80% of people have HSV1 so you may have it and not know" ...

 

Try not to overthink things until you get to the OBGYN though - get some advice from a Dr that sees this kind of thing every day :)

 

((HUGS)))

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I understand. It sucks. And makes sex hard for me even before H. I just would typically grit my teeth and do my best to hide that I was hurting. No guy wants to see someone in pain as they are trying to penetrate you, nor did I want to discuss the whole issue with them. It's confusing for men. I had laparoscopy and cystocopy (spelling) done at 17, to confirm IC and rule out endo. I was negative for endo. I felt very blessed about that. As I have wanted to have kids since I was like 10. Anyways, what you describe does sound like vulvodynia of some sort. I'm not a doctor though. But it sounds similar to my burning. Luckily, I don't burn all the time, but some women do. I hate it for you because it's a pain in the ass when it is burning. And yes, stress has ALOT todo with it. As stress makes everything and anything worse. I have read some cases where women believe it was brought on by stress, some it's hereditary, and some it just shows up with an unclear reason. Some women are born with it and notice it the first time they have sex. This is also one of those areas where they don't seem to know a lot about it. Sucks for us who have it. If it is and you end up doing shots... They hurt. Worse than the pain I felt during my first herpes out break. Literally, the most painful thing I have ever had done to my body. BUT they work. So I take 10 minutes of pain for a couple of weeks of normal sex. (When I am sexually active) message me anytime and keep us updated. You aren't alone. Lots of women have it and just never get it diagnosed. Initially, in the old days, they said women who claimed to have IC and vulvodynia were crazy. Luckily, they have now shown it's not mental, it truly is a physical condition. I know I'm not crazy, when my vagina is on fire... It isn't in my head. I know something's up! Lol!

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@thisisgoingtobeokay

yes, the burning, raw feeling definitely is unpleasant, but after having read the input and support from you and those others that have offered there support here, it feels a little less painful. this is why sites like this are great because it helps to know that we aren't alone, even though our medical providers may make us feel we are.

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@thisisgoingtobeokay

 

I remember seeing a show where a girl had vulvodynia ... she couldn't have sex at all because of the pain. They finally sent her to a sex specialist and they gave her a bunch of exercises to help "open things up." Evidently there WAS a mental side to the whole thing because once you come to anticipate the pain, you unconsciously clamp down and it makes things worse ... she went from still being a virgin several months after she got married to having a totally normal sex life... so you may want to research sex specialists who deal with vulvodynia if/when you get into a relationship.

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@sniper I definitely agree. Sites like this help! We are all here for you. I know I'm young but I've been dealing with vulva pain for a good few years. I know what's up with that issue! I researched a ton and still do a couple times a year on it. I hope it isn't a vulva issue, but if it is I'm here to talk to and have a few years experience under my belt on it. I feel like @wcs on this topic, I know how to deal with it and get past it, and have extensive personal experience with it. It's a pain, literally! Hang in there!

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@wcs Definitely agree there is a mental side to it. I anticipate the pain, always during sex so it makes everything a little tight because I do clench up during that initial pentetration. I just meant that the mental side of those who have it are not crazy. It is a legit thing. I don't do anything for it anymore! Yes, I still have pain but I've learned to train myself mentally for it. My doctor actually told me that learning to cope rather than take medicine or do shots was the best way to go. If I get married, I probably will start the shots back up just because I know they work and my sex life is non existent right now. Typically, I flex my muscles down there outward during pentetration and that helps and lube definitely helps. I just cope with IC and vulva vestibulitis. Nothing was really working and so I just stopped and learned to deal. And on the sex therapist, I did see a physical therapist for a while. The pelvic pain doc recommended I see one. We did Kegals and this little weight that I would put up there and hold it in. Supposedly, there is some correlation between pelvic floor dysfunction (which I also have) and vulvar vestibulitis. I didn't notice a difference though. The shots seemed to be my only way to completely stop the pain during sex.

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I literally have to tell myself during sex to relax and flex out. Weird stuff. Probably the reason I've never had an O during sex, I'm focused on making it not hurt. I don't like to tell guys it hurts because they focus on that during sex and constantly ask if I'm hurting. Which just annoys me, because although it hurts for me I don't want them to not enjoy it. So I just stopped telling men. Works better that way. Sigh.... Being a woman sucks.

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The therapist that worked with the girl had her use something that helped to stretch the vagina so that it got used to relaxing and opening....

 

And honey - if you are looking for a long term relationship, then they *should* know and care about what you are dealing with. Yeah - I can see you giving up on telling anyone that was a casual hook-up but once you are ready to settle down, let the guy know...and if necessary, get therapy WITH him so he knows what to do to make it easier for you :)

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