HSV1 Prodrome vs Pudendal Neuralgia

[tortugasenyor]

Hi!

I was diagnosed with HSV1 genitally in 2010. I was in a relationship (still am) and was very fortunate to have a supportive boyfriend throughout. However I started getting strange pains in my butt and itchy pubic area about two years ago that no one could explain to me. I was nervous about this connection to herpes, and so refrained from sex with my bf for a YEAR while searching for answers to if this was contagious or not.

 

Finally found a doctor who explained that these symptoms were something called pudendal neuralgia. The pudendal nerve was probably upset from my first outbreak and that's what the pain and itch were from. And that it was not something that I could spread.

 

This was great news and I could finally get out of my head and stop worrying. Hadn't felt it for awhile and then they came back at the same time, followed by what I was concerned was a new outbreak. I didn't understand the connection so returned to my doctor. I had no real lesions, so the doctor told me he thought it was just an anal fissure. and the neuralgia beforehand was just a coincidence. He took a swab to calm my nerves though and make sure it wasn't an outbreak, but told me I really should not expect anymore outbreaks as it was type one below the waist.

However the test came back positive as an hsv1 outbreak! This sent me back into a worry spiral, feeling like I can never really tell when I"m having an outbreak/contagious and didn't want to go back to a time where I have to be celibate out of fear and uncertainty.

 

He said the feelings from neuralgia was just prodrome period. Why didn't he think this before?! He told me to go on daily suppressive therapy so that I no longer had to worry about it.

 

SO (finally here are my questions):

 

1. He prescribed me famvir. Does anyone have any experience with this drug and are there any downsides from taking it daily? Will I be preventing my body from fighting the virus on its own if I take it constantly?

2. The pain in my butt and itch have not gone away but actually have been made worse during my time on acyclovir and as the outbreak has gone away. So how do I know if I'm still contagious? How do I know if I"m able to have sex again if I'm on the pills and don't have an outbreak but still have the feelings of "prodrome"---even though the outbreak is now over. Is it actually prodrome or could it just be the neuralgia as he first explained it? Any help or advice would be greatly appreciated as I went to see him three times this month and can not afford another doctor's visit right now.

[WCSDancer2010]

@tortugasenyor

 

First - welcome... :)

 

Before we go any further, one question. Do you know if your BF has HSV1? Has he actually been tested for it? The reason I ask is that 80% of the population has it and 80% of them don't know they have it. If he has not been tested recently I would get him tested - if he has HSV1, then you have nothing to worry about anyway - you can't give him "more" of the virus... he'll have antibodies built up to the virus so he would be safe.

 

There was a discussion here about famcyclovir:

 

http://herpeslife.com/herpes-forum/discussion/2065

 

Any of the anti-virals should be ok - some people tolerate one better than another so you just have to see how it works for you.

 

Regarding prodrome vs neuralgia - well, I can't argue with a Dr on this one. You really need to sit down with him and get him to help you figure out what the heck is going on. I would *guess* it's a prodrome and the anti-virals should help with that so you may want to just try them and see what happens.

 

As for why he didn't think of the prodrome option - many, many Doctors are TERRIBLY out of date around Herpes. They have much bigger fish to fry like Cancer, Heart Disease, Obesity, and the like. Updates on a "nuisance skin condition" isn't high on their reading list :(

 

If your Dr is a family Dr, I would say get thee to an OBGYN or Urologist (I'm not assuming your sex here as I read nothing that made that completely clear ;) ) .... They will know a LOT more about what is going on and can advise you better about your personal situation.

 

Peace

 

[whatsallthehubbub]

No sex for a year??.. omg!. Marry that guy.. seriously. . Just do it. He is a SAINT! Lol :)

[tortugasenyor]

@WCSDancer2010 well that's the strange part. the doctor I went to SPECIALIZES in herpes. It was pretty amazing to find him and he seems to know so much, but after things not being what he thought they were I'm not sure what to believe.

 

He actually told me my boyfriend didn't need to get tested for HSV1 because if he had it orally that wouldn't mean he had it genitally so we still wouldn't know. I guess this means if he had it orally without symptoms I could still give it to him genitally?

 

just tired of being confused and scared to touch him.

[WCSDancer2010]

.

[WCSDancer2010]

OH. EM. GEE...

 

IF you know your BF's status it will tell you if you need to take the anti-virals or not.... SMH... ~X(

 

So here's the deal - you need to tell Dippy-the-Doctor that you want your BF tested because if he has HSV1 then you have nothing to worry about as far as having sex/kissing/whatever because you can't give it back to him - he would already have the antibodies so it doesn't matter if he has it Orally or Genitally ... but it DOES matter for you to know if you need to protect him or not. If he comes back negative then you would want to go on the anti-virals which would cut the risk by at least 50% down to about a 2% risk of giving him the virus...

 

So here's the deal - read these handouts and such - in fact, print out the disclosure sheet and really get to know those facts. Read all you can here on the forum so you get comfortable with the info. Then go back to the Dr and tell him you want your BF tested so you know if you actually NEED to take the anti-viral or not...

 

Handouts:

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

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

 

Disclosure e-book:

http://eepurl.com/b4IPP

 

 

[tortugasenyor]

Thanks for all your help @wcsdancer2010. even though this doctor specializes in herpes, it may be time to start seeing someone else! in your opinion, do you recommend a general doctor or a dermatologist?

[WCSDancer2010]

I recommend an OBGYN for women and a Urologist for guys.. or go to Planned Parenthood because STD's tests are one of the main things that they do