Had herpes for 5+ years... What will an outbreak be like?

[justagal85]

Hi all

I posted in the "I just found out I have herpes" board this week. I found my status via the IGG exam. Positive for HSV1 and HSV2. I am quite OK with my status (I'm engaged, to be married soon, and my fiance has been very supportive) but I keep thinking in my head now "when will i have an outbreak?" "what is it going to be like?" and then I had tried to get a prescription for acyclovir (sp?) and valtrex but my doctor refuses because I'm symptom-less, and honestly, always have been. I've tried to find others, like me, who HAVE HSV2 but have never had symptoms but I find it hard. Ironically, it feels like ignorance would have been bliss now, because I'm so confused and anxious of the "if" that I'll probably give myself a damned outbreak.

 

Thanks for letting me rant and share my story. If you are asymptomatic like me, please respond and share your story. I'm feeling a bit like the "odd one out" even though I'm apparently the majority of HSV2 cases.

[WCSDancer2010]

@justagal85

 

Hey there!

 

First, stop worrying about what an outbreak *might* be like... it makes as much sense as worrying about what a Flu might be like, or Cancer. Unless/until it happens, don't obsess about it. Noone can tell you what YOUR OB would be like anyway. We are all having different experiences thanks to our particular circumstances (age, hormones, diet, stress, etc) AND the fact that everyone experiences pain and the emotions of their "story" about the pain and other symptoms differently.... so just put that one aside and deal with it if/when the time comes ;)

 

As for the acyclovir, I would print out the info on the handout and perhaps even the CDC site (both links below) and take them to the Dr and ask him about aysmptomatic shedding and your fiance (I would actually take your fiance with you...because if he is worried AT ALL about getting it, then he needs to have a say in the conversation) and ask the Dr for the script if you still want it to protect your partner.

 

Handouts:

http://bit.lyh-opp-diagnosis-handout/

http://bit.ly/h-opp-disclosure-handout

 

Disclosure e-book:

http://eepurl.com/b4IPP

 

 

http://www.cdc.gov/std/herpes/STDFact-Herpes.htm

On the CDC site page , I would highlight this part:

 

How is genital herpes spread?

You can get herpes by having oral, vaginal, or anal sex with someone who has the disease.

Fluids found in a herpes sore carry the virus, and contact with those fluids can cause infection. You can also get herpes from an infected sex partner who does not have a visible sore or who may not know he or she is infected because the virus can be released through your skin and spread the infection to your sex partner(s).

 

Ultimately, you don't HAVE to go on the antivirals but I would want you and your fiance to research and understand the risks (minor tho they are) so that there are no misunderstandings later .... I don't believe it's the right of the Dr to make that decision for you.....and if you are seeing a Family Dr, I actually would go to an OBGYN for this conversation. Family Dr's are soooo horridly out of date regarding asymptomatic shedding :(

 

I've been in relationships where I used the meds and others where I didn't...once I know the guy really understands his risks (which are minor with me now because I hardly break out too) if he is ok with me not being on the meds, then I don't go on them... But it's something I feel I should do if they are uncomfortable with any possibility of getting H.

 

 

[abc123]

@justagal85.... I read your story. I too had some questions about be asymptomatic, etc.... I had the virus for a long time before I even had my first breakout.... Which was mild, no pain, etc.... You can read my story if you'd like, but it's not one with a happy ending like yours. You are very, very lucky to have your man supporting you. There are a lot of people here who have non frequent breakouts. I've only had one since October 2013. Was on meds for a while, then off. Nothing has happened. I do try and take care of myself and take vitamins and lysine. Anyway, I am very curious that he have been with your fiancé for a long time, didn't know you had the virus, and he is fine? I have been trying to find any information ( for myself and my own curiosity) of any couple where one is h+' the other h~, and not passing on the virus-- when precautions are taken. Not trying to be nosy, just curious. For what I have read and researched it seems like the anti- viral really make a huge difference... Which gives people like me hope for a normal loving relationship like you have. You give all do us single gals a lot of hope! Thank you for sharing your story.

[justagal85]

@abc123

 

Thank you for your response. I was so happy today to see some responses. I would love to read your story. How can I do that?

Was your October outbreak your first one? Now that I have found out I am H+ I have looked to the past to try to see if I had a yeast infection like symptom that I overlooked. History has rung many bells. I recalled one time in December of 2012 that I became very red, almost raw, all around my labia and assumed it was a yeast infection. The itching drove me crazy -- I couldn't even sleep for a few nights. This was a very stressful period as I had to undergo some genetic testing for breast cancer and I was so down and stressed from it. I remember I got cultured at my doctor and the test came negative but I thought perhaps it could've been external only. I had used nystatin cream and it went away, but perhaps it wasn't the cream at all-- perhaps it was in fact an outbreak. Now that I think of it, it was very likely an outbreak of sorts but without the blisters that me (and so many others) are so inclined to think an outbreak would look like. As for my fiance, only time will tell because of the discovery of at least 6 months of waiting to discover antibodies. Other than the use of condoms, no other actions were taken. I wish I could say that other precautions were taken but given my lack of knowledge, he certainly has been exposed WITHOUT the use of condoms (before we wised up and thought hey a pregnancy might not be a good idea yet!).

I have always stayed on the healthy side of things other than a cigarette now and then. I tore up my last pack and don't plan to go back. I also use a few drops of tea tree oil daily in my undies because I used to get constant yeast infections (which now makes me wonder if those were damned outbreaks too)... It was an unsolvable mystery several years ago where I constantly felt yeasty but always culture negative. I took enough Diflucan to start a pharmacy but by OBGYN never thought it could've been herpes. I finally gave up and just moved on from it.. Only now is this beginning to make some sense. As for cold sores, I have HSV1 today, but never to my recollection have I had a cold sore on my face and so I don't know if I should really even expect differently. I have spoken with him about me going on anti-virals and he is not necessarily against the idea, but doesn't seem to be crazy for it either. I know I am very blessed to have someone that is OK with this diagnosis. Every day I wake up and I am thankful for his acceptance. I am overcoming and working to get over my feelings of guilt for having this virus and working on my confidence. Luckily I have a counselor that I have decided to see again to work on myself. I know that it is a stigma from SOCIETY only and that despite having this I am still the same amazing woman. From what I have read, the viral shedding supposedly reduces every year you have the virus, but I don't know if that is true. At any rate, I have decided that I will see an OBGYN and get antivirals to use to keep my fiance H-. There is no guarantee that he will be as asymptomatic as I have been (and I constantly remind him of that, because he seems to like to use the H experience as one that is like MINE) and I do not want to cause him any physical or psychological distress. I keep reminding him of that. He may be the type to break out more frequently and it could really have a different effect on him... I also realize that I can't over obsess with it either..

 

Some things I added to my regimen are 1 teaspoon black seed oil. I also already take evening primrose oil nightly because I lost my period for 6 months after a vigorous exercise plan. From what I have read, those supplements may be good options for skin conditions such as H... so I am hoping I keep even mild outbreaks away with this :)

 

I would love to read your story and talk more some time. Thanks for taking the time to comment.

[abc123]

Hi there... @ justagal85. I guess you could look under the link of "my herpes story" and look for 'Worst Herpes Story Ever- parts 1-6'. I exposed someone to it, even though I didn't know I had it. They ultimately tested negative, but it bothers me everyday. It didn't end well. I work on my guilt over it on a daily basis, so I know what you mean. My first breakout was the last week of September 2013, officially diagnosed on October 4, 2013. It has only been just recently that I have felt a little better. But no outbreaks since. From what I remember, the outbreak didn't last long. Those few weeks are a blur. I too see a therapist now- since November because I was traumatized and depressed- it's always good to have someone to talk to. I would recommend anyone who has tested positive needs to see a therapist! Yes, the stigma is the worst. Unfortunately I don't see that changing in the world anytime soon. That's why being on this site is so great. Everyone here is loving and supportive. It's nice just knowing there are many of us in the same boat, same fears, same feelings. Good to hear back from you. It sounds like you are off to a great start and with the love and support from your fiancé, things will be fine. Hugs, abc123

[WCSDancer2010]

One thing to think about - if you are seeing a therapist, you could take some of the handouts from here and give them to them so they can give it to anyone else they may be seeing who is dealing with H ;)

 

 

[Guest]

So just for confirmation, so that people reading this post are not confused, both ABC and Justagal were not asymptomatic and reported having symptoms. ABC notes "first breakout was the last week of September 2013, officially diagnosed on October 4, 2013." Justagal clarified "[h]istory has rung many bells about symptoms," and noted symptoms in December of 2012. Both women were symptomatic.

 

The medical science does not support normal occurrences of never having symptoms if H+. It occurs rarely. This is an important point because many people who have been exposed to an H+ partner, in low risk scenarios, and do not have symptoms, must still dwell in the house of 4-month psychological pain and fear of being that "asymptomatic person," notwithstanding the overwhelming medical evidence otherwise.

[WCSDancer2010]

@Unhappy1

 

Justagal said

 

"History has rung many bells. I recalled one time in December of 2012 that I became very red, almost raw, all around my labia and assumed it was a yeast infection. The itching drove me crazy --"

 

That *may* have been Herpes... but it may also have been a yeast infection or bacterial vaginosis ... VERY common problems in women, especially given the stress she was under at the time. I went through a period where I had multiple yeast infections and man did they ever ITCH! So yes, her itch may have been Herpes, but it may have been a yeast infection ... and given that it went away with the Nystatin cream, I'm betting on a yeast infection.

 

ABC said " I had the virus for a long time before I even had my first breakout" ... she had her FIRST OB in Sept 2013...but believes she was exposed long before that by a friend that she saw briefly who she knew had Herpes but chose to see anyway. (Go back and read her story). I'm guessing from her story it was at least 6 months from her last exposure (maybe closer to a year) to her first OB.

 

"The medical science does not support normal occurrences of never having symptoms if H+. It occurs rarely. This is an important point because many people who have been exposed to an H+ partner, in low risk scenarios, and do not have symptoms, must still dwell in the house of 4-month psychological pain and fear of being that "asymptomatic person," notwithstanding the overwhelming medical evidence otherwise."

 

The problem is, we women have sooo many things that can go wrong "down there" (men do too but a whole lot less), that at least for us, there will be no way to know if that rash/itch/pimple/discharge/etc in the past was Herpes or something else unless it was cultured and properly diagnosed. So to assume that those symptoms was actually a Herpes OB is a dangerous assumption.

 

I don't know where they are getting their information and HOW they can say that unless they have had a lifetime study of a large group where they were swabbed on a very regular basis and ALL odd symptoms recorded. Given the lack of really serious studies in the last 20 years I'm taking that with a grain of salt until I see the studies that prove that.

 

And btw, "asymptomatic" means "showing no evidence of disease.". Any time you are not in an OB, you are asymptomatic. So tho she *may* have had an OB in the past, Justagal is currently asymptomatic....

 

I've seen some of the posts on Medhelp ... while I think it's a decent place to get info (better than most) , I have found some of the beliefs of the Dr there to not gel with my experience and my research. The CDC itself warns of the possibility of getting H from someone who has no symptoms

 

. You can also get herpes from an infected sex partner who does not have a visible sore or who may not know he or she is infected because the virus can be released through your skin and spread the infection to your sex partner(s).

 

So I can't agree with your last statement

 

The medical science does not support normal occurrences of never having symptoms if H+. It occurs rarely. This is an important point because many people who have been exposed to an H+ partner, in low risk scenarios, and do not have symptoms, must still dwell in the house of 4-month psychological pain and fear of being that "asymptomatic person," notwithstanding the overwhelming medical evidence otherwise.

 

I haven't seen the "Overwhelming evidence" that the 80% of people who don't know they have herpes have actually had symptoms and not known it. I'd love to see anything to prove this... but given that you can't go back in time and culture all those *possible Herpes symptoms* (which are often the same for other diseases and infections) I don't know how they can make that statement.

 

Yes, many suffer from the psychological pain of "what if I have Herpes?" during those 4 months... and the really stupid thing is that this it the "reason" the CDC gives for not testing....(they seem to feel that ignorance is healthier than education) which perpetuates the spread of Herpes because there are sooo many who have it that unknowingly spreading it, which just feeds the stigma and thus the pain because of the masses of misinformation.

 

I'm convinced that once we get some solid information to the public like TV ads with H+ people discussing the risks and the realities, that the psychological pain (both during the waiting period and post diagnosis) will be drastically reduced for most people (some will freak out regardless ;P )

 

 

[abc123]

@Dancer....and everyone in this post....thank you for the information. Dancer, you summed it up for me. 'If you are not currently having an outbreak you are asymptomatic.'

I would still like to hear from more people here who are h+ or with a partner who is h+, and are taking precautions and their partners have remained h-. I'm pretty convinced by now that if my last partner would have been constantly on anti- vitals, it would have prevented me from getting this virus.... Or at least drastically lowered it. "David" and I have remained friends and he is currently dating a new girl. I raked him over the coals with a severe tongue lashing that he better move Heaven and Earth to keep her h-. Meds, everything. He told me that he has already disclosed to her and that "she doesn't care... It doesn't matter to her"... Which is great. However, he did pass it to his ex wife in the later years of his marriage, then to me, and I told him if he does this to one more person that I will kill him! I too made a poor choice when I continued a sexual relationship without knowing the facts. Paying the price of that dumbass move on my part has cost me a lot in my emotional well being and I feel robbed me of a future with any new partner. Now that he is madly in love with her and she with him, she might "not care" now.... But if she ends us contracting h and for some reason their relationship ends down the road...she will MOST definitely care.

[WCSDancer2010]

We just plain need info to get out to the public but the CDC is too worried about people freaking out and creating a run on H-testing I think :(

 

And again, people need to be properly educated or many will be convinced that EVERY itch, pimple, and rash is herpes. Every one of them freaking out...most likely dealing with something else. It's going to be a delicate balancing act to get the public educated without starting a mass panic...

[justagal85]

I'm going to have to agree with @WCSDancer2010 here.

 

I can't actually CONFIRM that those symptoms I experienced of redness were symptoms of an outbreak. I've never had an initial outbreak, and given that my fiancé is H- and I am H+, and I have not been with another man sexually since 2006 without seeing one blister in my LIFE makes me pretty asymptomatic...

The redness, as you know, can be a sign of anything from BV to a yeast infection to a skin reaction to a pad or pantyliner....

 

There ARE many people who don't know, won't know, and I ONLY know because I asked for a test (that the doctors fought me on) because I wanted to know.

 

 

Also, just to add, I'm HSV1+ as well. NEVER seen a cold sore on my mouth in my life.

 

 

[WCSDancer2010]

@justagal85

 

Ya know, there's a good chance you have HSV1 oral from what you just said... the one problem with the blood tests is you don't know where exactly you have it :p