OutOfWit

@lady I started using gabapentin for my bladder condition but noticed it dulled the symptoms slightly for the herpes.

@Lady- just a thought... I feel I responded better to acyclovir than valtrex as well. And I am considering going back on it soon. I also feel like my outbreaks are getting worse with the valtrex. Gabapentin had helped the nerve pain.

Thank you! How long have you been diagnosed? That is scary having to take such high doses!

Hi everyone... I have a few questions. I have been on and off the forum over the past year. Now everything is coming together at least for me although I have not ever had a positive genital swab. Since I was a child I have suffered from cold sores about once a year. Because of this when I started experiencing non-classic symptoms of genital herpes I was told it could not be genital HSV 1 because my body would have immunity to the virus. I have no idea how I contracted it genitally but about 8 years ago I started having strange vaginal symptoms about every month worsening after the birth of my daughter. Sometimes the cultures would come back yeast, sometimes BV sometimes neither. I did not have any sores or lesions that I knew of- just itching like crazy vaginally anally and lots of discharge. Doctors thought I was crazy and I started to feel crazy too. It went on for about a year and a half, until I met my current fiancée. Then it disappeared and I felt completely normal for a while. My fiancée and I broke up for a short while- I was not with anyone else and I started experiencing paper cut like lesions. Very small only the diameter of one of these letters typed now. Doctor said it could not be herpes. Meanwhile I was starting to get oral outbreaks like mad. My lips, tongue strange spot on my eyelid even my chin. So I talked to my doctor and they put me on acyclovir. It worked like a charm. The herpes would go away within days. After about a year of taking episodic therapy I noticed the drug was not working as effectively as it had. I was experiencing bladder symptoms and diagnosed with interstitial cystitis. I talked to the specialist and he changed me to valtrex 500mg everyday suppressive therapy. But I began to notice the same thing. It became less effective and I was still getting frequent oral outbreaks. Now fast forward to this year I had an accidental fall with rectal trauma and started to get crazy symptoms... Rectal pressure fissures- feeling like something was stuck in the rectum, leg pain pins and needles- buttock pain. Now finally I am having lesions on my anal area. True lesions that hurt like hell. The skin feels like it was peeled off and I swear I can feel every nerve ending when I am touched there. Since the fall/trauma I have had these symptoms almost every month lasting for three weeks and only remitting for one. Doctor saw the lesion and said it looked like herpes but swab was negative. But he does believe it was herpes. The only connection between the two periods in life that I have had constant outbreaks is birth control. The first time I was on the mirena and the second time I have been on estrogen replacement for my bladder condition. I experimented with going on birth control and the outbreaks worsened. I recently went on vacation and I thought I was getting bug bites but broke out in a herpes rash on the thigh calf and ankles. I looked it up and it said you can have disseminated herpes and that is very dangerous. I am not sure if I should continue the valtrex because it does not seem to be doing much good and am do scared that it seems with time this is all getting worse. I have started l-lyseine. Can anyone help me?

I am beyond confused. I cut out caffeine, soda, sugar, chocolate I take lysine 3 times a day. Take valtrex 2 times a day and drink lots of water. I am getting constant outbreaks. What else can I do and has this happened to anyone else? My doctor thinks I should see infectious disease doctor. Input appreciated...

I am grateful for my beautiful daughter. She has always been my miracle

Wcsdancer they always come back negative for cultures because usually they are papercut type sores, or not enough virus in the sample I guess to show up. This sore was the first one to present as typical herpes so I won't get the results back yet.

Thank you @wcs dancer. I was not able to read all of it until I came home from work. I am curious about if you can get herpes on your tongue. Like little white dots. Have you found any information on that- that's mostly where I break out? During oral outbreaks

Just to add... A funny thing happened during this whole process. When I first said genital herpes my fiancée face looked disgusted and I felt horrible. Being a nurse I did the whole education thing and after about a night of it sinking in.... I come he from work and he says to me "I was thinking.... What's the big deal. It's a cold sore right? Except down there" amazing. I only wonder if the world would also change with proper education.

Thank you so much. I have gotten so much comfort from this forum already ! I guess we all go through these feelings. It's really not the herpes we have to accept- it's ourselves right?

That's beautiful!

Are you able to go to a clinic and get a culture? Not all herpes looks like the pictures on google. Trust me.

Hi everyone- so after being semi-sure I had herpes all along my doctor finally diagnosed it yesterday. I sat in the parking lot and cried hysterically for about 20 minutes, came home and let my daughter watch tv while I wallowed in self pity and sat online reading forums. And today I went to work (I am a nurse) and tried to take care of my patients all the while thinking about herpes. Most of the time I spent wondering how I got this disease. Or I should say when I contracted it genitally. I suffer from cold sores all my life. I have been with 2 men in the last ten years my daughters father and my current fiancée. Neither of them have it and both test negative for type 2. I also test negative for type 2 as well so we are assuming it is hsv1. Anyway I thought so hard I made my head spin. I had some symptoms right before I was pregnant just itching and discharge so did I have it even then and not know it- or it is more possible I contracted it through oral- my fiancée is a superstar at that. I guess it really doesn't matter in the end. I am trying not to run circles around something that will always be a mystery. I am trying not to think I'm a dirty skank. Yesterday I didn't think it was possible to smile. But I did today. I was reading posts from Herrytheherp During my lunch break because he may be the most optimistic hilarious person I have ever not-met As well as all the other comments received by all of you. The most caring strong group of people! Thank you for semi- pulling me out of my funk.

Yes I have tried abreva. It's not just around the lips it's on the roof of my mouth. Along the sides of my tongue. I know everyone says that is canker sores but my doctor told me it's all a form of the herpes virus.

Hi @ thisisgoingtobeokay! Wow I didn't think I would find anyone on here with both IC and herpes either. Yes I was diagnosed with IC last year right around the time I started being suspicious of herpes. I go to a specialist who is about an hour away. Right now I am treating it with diet - staying away from soda, caffeine, alchohol and receiving the instilations. Tried hormone therapy but that seemed to make my oral outbreaks worse. It's a lose lose situation it seems. Also the IC diet is low in vitamin c which is what helps herpes outbreaks too so I am damned if I do and dammed if I don't. I am actually taking valtrex for constant oral outbreaks they are so bad. As soon as one heals up- another one starts. My doctor suggested that I go see an infectious disease doctor so that is nexts has anyone experienced non-stop outbreaks and did they ever get better?

Thank you! I appreciate the support. As I was saying this is just an extremely trying time. I have had interstitial cystitis for about a year now. It is very painful and aweful. I try my best to deal with that most days. Dealing with that has been tough and sometimes I find it hard to get up in the morning. This just came at a point where I didn't think I could handle anymore.

Thanks Harry the Herp... Fantastic name by the way. Sorry for being dramatic. I do not honestly plan on letting it get me down, but I needed some outlet to let go of all those feelings. Right now I am just dealing with a lot including an autoimmune bladder disorder this is just a lot to take in in addition to the physical pain I deal with from that. As far as the dirty- yes I understand I just feel as though maybe if I were with a hundred guys I could at least say well... Ya did it to yourself. But that is not the case. How long does it take to get positive about all this?

Hi john. Just curious did they test you for HsV 1 & 2. Herpes 1 is usually not tested for but it can be a cause in the genital area.

Hi everyone. I hate herpes I have been concerned for a year that I had it and each time they were too small too dry to culture. Well today the doctor finally told me it is. I am feeling extremely... Low. I have a daughter so I won't commit suicide or anything but if not for her I just might. I am not sure how to pick myself up at all. I feel dirty, disgusting. I watch tv shows and I realize my life will never be normal again. Not how I used to be. I just want to be clean again. I want to feel sexy loved normal. I just want to sleep for ever.

Awe.... Your best bet is to retest... And definately if you get another sore... Ask for a swab. The not knowing is the worst isn't it? I still don't know!

Were you rejected or just anticipating rejection? Hey I was rejected by my fiancée. Doesn't get much better huh?

You should definately go get a culture and some blood work. Is the pain in your bladder as well?

So happy for you! I think that's the best way to do it... Build a strong bond first. Everything else follows! She's a keeper

I've done a lot of research myself. Anti-body testing is not always accurate as it takes awhile for your body to make antibodies. A positive culture is positive. That means she has the virus in the spot that was swabbed.

Did you get a urine culture?