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Aciclovir doesn't work in preventing attacks! Help!
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Aciclovir doesn't work in preventing attacks! Help!

I'm at my wit's end and my last hope is that someone on this forum can help me.  I contracted genital herpes 10 years ago.  The first year was pretty horrendous but as the year's went by (and with the help of Aciclovir) things improved to a manageable state (5 or 6 attacks a year).  For the past year however things have been getting worse and worse and despite taking 2 x 400mg of Aciclovir a day for all that time, I am never attack free.  Admittedly I don't have the full on attacks with huge blisters/sores but it is just as painful and makes having any form of sex life impossible and I constantly suffer from burning sensations and pain.  I have been in a very happy, stable relationship for the past 8 years and my partner is nothing but supportive and understanding and puts no pressure on me whatsoever.  I know he misses our sex life (as do I) which was amazing until last year, since when we are lucky if we are able to have sex once every couple of months.  I cannot do any sport either as even just walking or going for a bike ride will cause some friction and start another attack.  I am now starting to think that my sex life is over forever and this is a very depressing thought.  Any help or advice would be much appreciated.
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11 Comments Post a Comment
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101028_tn?1348750963
how were you originally diagnosed? do you have hsv1 or hsv2 genitally?

odds are what is going on isn't due to your herpes. very few people don't get a 70% reduction or more in ob's while on daily suppressive thereapy.

are you male or female?  i know you picked male but many folks don't pick the right gender hence why I ask.

have you followed up with an urologist at all yet?   have you had your prostate checked?

grace
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Avatar_m_tn
I have HSV2 and I am female.  I was diagnoses by my gynacologist upon examination/swab.  I haven't spoken with a urologist.  When I look at my clitoris is looks exactly like the beginning of an attack but, as I say, it doesn't develop into full blown sores.  I can see exactly where it is, never in the same place but always on the clitoris and it is extremely painful to touch (feels like I'm digging a needle in it).  It is swollen but not too much.  Any type of friction sets it off.  I never wear trousers any more and rarely even underwear as it is too uncomfortable.  I have burning sensation a lot of the time and a bit of itching.  Are you thinking this is not herpes?
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101028_tn?1348750963
you picked the male gender hence why I assumed you were male.

Just a visual diagnosis of herpes isn't always accurate. You should pursue a type specific herpes igg blood test to see what your status is to confirm hsv2 for starters.  You also need tested for yeast and bacterial infections vaginally.

your clitoris being swollen is likely something non-herpes going on. Our clits are just a bundle of nerve endings and anytime they are irritated, it can cause issues like this.  Keep the nerves irritated long term and it can cause long term issues that are hard to get rid of :(

definitely pursue further follow up. None of this sounds related to your herpes. If it's not herpes, all the antivirals in the world aren't going to help make it better :(

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Avatar_m_tn
My herpes has been confirmed by an STD specialist who prescribes my Aciclovir. I am starting to think though that I have something in addition to the herpes.  I have also wondered if I could have done some nerve damage as I have had so many herpes outbreaks over the years, always in a very similar place,that I could have done some permanent damage.  I don't know if this is possible or not.  My partner has also told me that it feels like I have a tiny hair on my clit.  I have looked but can't see anything, but of course the tongue is incredible sensitive and feels everything.  What could this mean|?  All I know if that my clit is constantly sore and I frequently have a burning sensation.  I have to urinate often and this sometime aggrevates things and sometimes not,  It doesn't really burn when I urinate though it can sting a little at times.  I have had cystitis once or twice in the past and it doesn't feel like this.  I just want things to be like before.  My clitoris is continually uncomfortable and sex is impossible.  Your support and advice is much appreciated.
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897535_tn?1295210035
I agree with grace, a visual diagnosis (STD specialist or not) is poor medicine without following up with testing. When I had my first outbreak, my GYN thought it was folliculitis and it in fact was herpes - fortunately she knew that her "guessing" was not the proper thing, and she had done a swab/culture of my symptoms. They both can mimic each other exactly.

You don't need to see an STD specialist if this is not STD related. Request the IgG type specific blood test for starters, and consider a gynecologist for your clitoris issue.
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101028_tn?1348750963
no, having multiple recurrences doesn't cause long term issues.

You need to be following up monthly as needed with your gyn to get to the bottom of this!  Even having recurrences 5-6x/year while on suppressive therapy is unusual and you really need to confirm this is herpes on top of whatever else is going on.

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Avatar_m_tn
I am certain that I have herpes.  I had unprotected sex with someone who had it (though I obviously didn't know at the time) and my first outbreak was a few days later.  I had a very bad first attack with small blisters over my thighs and quite a high temperature.  I have had many full blown herpes attacks and it is definitely that.  For 8-9 years it was very manageable with suppressive medication, as mentioned, it is only in this past year that things have got considerably worse and this is why I am now thinking that I could have something in addition to the herpes.  I have researched folliculitis on the web and have seen pictures.  What I have doesn't look anything like what I have seen.  It really does look like the very beginning of an outbreak (small spot, red, slightly swollen) but it doesn't develop further.  Some days it is very painful, others not so bad.  I certainly need to go and get it checked out though and thank you and Grace for your time and advise.
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Avatar_m_tn
Well Grace, as you correctly said, my recent problems were something other than herpes.  In fact the constant inflammation of the clitoris is being caused by a staph or anaerobic infection.  Swabs were taken to confirm which one.  Also, I have 2 hairs growing out of my clitoris (which the doctor says he has never seen in his 35 year career!) which he thinks may be causing the infection.  The hood of my clitoris is very tight and explained that if I was a man, he would recommend a circumcision!  He says that he wouldn't rule out a small surgical procedure if we can't clear up the infection with antibiotics and cream.  I am interested to know if any other members have had a similar problem but am aware that this is not the correct forum to post that in.  I just thought I'd give you an update on my earlier post.  Thank you again.
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101028_tn?1348750963
glad you are getting answers  :)

did they prescribe topical estrogen cream to the area to help with the tightness?

since this has been going on for so long, might take more than a few rounds of antibiotics to clear it up :(  Keep going back as needed and of course remember one of the joys of being female is that you might end up with yeast after the antibiotics too :(  

keep updating us :)
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Avatar_m_tn
Hi Grace, I hope you don't mind me continuing this post in this forum.  I have been prescribed Fucidin cream and Metronidazole antibiotics.  Do you think I should ask the doctor about prescribing estrogen cream?  Would this be to help release the hood and hopefully prevent a surgical intervention?  Your knowledge and support is invaluable to so many of us who don't know where to turn and (I know I speak for hundreds of fellow forum users) we cannot thank you enough.
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101028_tn?1348750963
at this point they are treating your infections. Certainly is the skin is still tight a month or so from now, it's worth asking about.   certainly cheaper and less painful than waiting for an incision to heal down yonder though not as quick.

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