PositiveSingles.com - the best, most trusted and largest anonymous STD dating site! Herpes Survival Kit - a specially designed pack containing everything you need to combat herpes and cold sore outbreaks (at a minimum cost to your wallet).

only search Racoon.com

"The Good News about the Bad News - 
Herpes: Everything You Need to Know
"  
Terri Warren's new book - which we do endorse.

First time visitor? Please Learn about Registering and read our policy page.
{Home}{Awareness}{Research}{Treatment}{HHP FAQ}{Bookstore}{Bio/Info Page}

The Original Herpes Home Page Discussion Forums

Subject: "PHN and Genital hsv type 1"     Previous Topic | Next Topic
Printer-friendly copy     Email this topic to a friend    
Conferences Neuralgia / Pain Topic #412
Reading Topic #412
fedup123
Member since Jan-13-12
11 posts
Jan-13-12, 07:30 PM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
"PHN and Genital hsv type 1"
 
   How long can post herpetic neuralgia last?

I was diagnosed with genital hsv-1 two years ago. My first outbreak was treated with aciclovir and I had no problems since and didnt even think about it. I went through a very stressful period a few months ago and think I had a mild outbreak followed by intense itchiness. That was four months ago but I now have a constant tingle or prickly sensation in my groin, mostly when sitting down. Is this ever likely to stop and does it mean the virus is still active? Its quite confusing as I had no symptoms or discomfort for two whole years and was under the impression that genital hsv-1 doesnt usually cause more than two or three outbreaks in your lifetime. I have tried taking more aciclovir but the pain gets worse when I stop taking it and is distracting me all the time at work. I am bout to start taking lysine to see if this will help. Anyone had a similar experience?


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top

  Subject     Author     Message Date     ID  
  RE: PHN and Genital hsv type 1 TheOriginalScooter Jan-13-12 1
     RE: PHN and Genital hsv type 1 fedup123 Jan-14-12 2
  RE: PHN and Genital hsv type 1 Lenoreadmin Jan-14-12 3
     RE: PHN and Genital hsv type 1 fedup123 Jan-14-12 4
         RE: PHN and Genital hsv type 1 fedup123 Feb-27-12 5
             RE: PHN and Genital hsv type 1 TheOriginalScooter Mar-01-12 6
                 RE: PHN and Genital hsv type 1 fedup123 Mar-02-12 7
                     RE: PHN and Genital hsv type 1 TheOriginalScooter Mar-02-12 8
                         RE: PHN and Genital hsv type 1 fedup123 Mar-02-12 9
                             RE: PHN and Genital hsv type 1 Lenoreadmin Mar-03-12 10
                                 RE: PHN and Genital hsv type 1 fedup123 Mar-03-12 11
                                     RE: PHN and Genital hsv type 1 fedup123 Apr-13-12 12
                                         RE: PHN and Genital hsv type 1 freeus03 Aug-07-12 13
                                             RE: PHN and Genital hsv type 1 fedup123 Aug-07-12 14
                                             RE: PHN and Genital hsv type 1 freeus03 Aug-09-12 15
                                             RE: PHN and Genital hsv type 1 fedup123 Aug-09-12 16
                                             RE: PHN and Genital hsv type 1 bob12 Apr-24-13 18
                                             RE: PHN and Genital hsv type 1 fedup123 Apr-24-13 19

Conferences | Topics | Previous Topic | Next Topic
TheOriginalScooter
Member since Aug-29-10
30 posts
Jan-13-12, 09:13 PM (CST)
Click to EMail TheOriginalScooter Click to send private message to TheOriginalScooter Click to view user profileClick to add this user to your buddy list  
1. "RE: PHN and Genital hsv type 1"
In response to message #0
 
   LAST EDITED ON Jan-13-12 AT 11:21 PM (CDST)
 
Hi ~
Yes the nerves will calm down give it some time and stay on the meds if it decreases the symptoms and the pain. Avoid wearing tight fitting jeans, thongs, and anything with lace. GHSV1 is typically not as active as GHSV2. Two or three outbreaks in your lifetime - that depends on the person and the host but typically those with GHSV1 have fewer outbreaks. Stress does make a difference as it can lower your immunity.

Stay positive.


Scooter


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Jan-14-12, 05:21 AM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
2. "RE: PHN and Genital hsv type 1"
In response to message #1
 
   Thanks, I was beginning to think it would never stop! Hopefully once it settles down that will be the last I see of it - fingers crossed.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
Lenoreadmin
Member since Oct-22-04
4279 posts
Jan-14-12, 10:48 AM (CST)
Click to EMail Lenore Click to add this user to your buddy list  
3. "RE: PHN and Genital hsv type 1"
In response to message #0
 
   It might be a good idea to see the doctor and get checked out for yeast or bacterial vaginitis, both of which can cause itchiness and genital irritation. It's pretty common and it makes sense to rule those things out.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Jan-14-12, 11:07 AM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
4. "RE: PHN and Genital hsv type 1"
In response to message #3
 
   I did go to the GUM clinic and got checked out for STDs and also non sexual infections but everything came back normal so I am assuming its the hsv causing the problem, though I am prone to fungal infections in my skin and toenails so possible I have thrush causing me discomfort too. The joys of being female!


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Feb-27-12, 03:05 PM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
5. "RE: PHN and Genital hsv type 1"
In response to message #4
 
   Well I'm back, nearly two months on lysine and still got the tingle/prickly sensation when sitting down. I hope it's not my imagination but could be getting milder.

Is the virus still active while experiencing PHN? I haven't had any sores though I do have a discharge which looks very much like thrush. The tingling is driving me nuts. I have a very healthy lifestyle, eat well and exercise regularly, rarely drink, so I am wondering if the hsv1 is the culprit here or not.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
TheOriginalScooter
Member since Aug-29-10
30 posts
Mar-01-12, 11:24 PM (CST)
Click to EMail TheOriginalScooter Click to send private message to TheOriginalScooter Click to view user profileClick to add this user to your buddy list  
6. "RE: PHN and Genital hsv type 1"
In response to message #5
 
   Where is the tingling occurring? My nerve irritation was/is on the outside labia both sides and the neuralgia also traveled up my anal cleft. In the beginning it was much worse in my bikini area also traveling down the back of my leg. I have had some not so fun yeast infections and have also struggled but PHN pain is NOTHING like a yeast infection for me. Not to say I haven't had vaginal itching but it's a VERY INTENSE itch that absolutely distracts me and has a painful sensation to it. That to me is nerve irritation. There is a definite difference - nerve pain doesn't even come close to a yeast infection. I have never had thrush. I know a girlfriend that has struggled with that though and also has H. She has never had phn with her thrush - lucky girl.

Are you wearing tight clothing? Wear loose jeans. skirts/dresses with no underwear, keep sweat off the area, if you work out make sure you keep dry. I have also used baby powder. I KNOW what you're gong through and it can be maddening. Did you stop taking anti virals?

I talked to a guy once that I met on an H site. He got it from a drunken night out on the town. He's itch was so bad that he made a cream out of yeast cream, gold bond, and something else. After a while it got better but he said he cannot stop taking the med because the virus/itching gets worse w/o it.

Could be something else but I sure spent a HELL OF A LOT OF MONEY AND TIME trying to figure it out seeing doctor after doctor and what a waste of time and money it was for me! But I was in severe pain and desperate.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Mar-02-12, 03:42 AM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
7. "RE: PHN and Genital hsv type 1"
In response to message #6
 
   I didn't get longterm antivirals just a short course but I am going back to the doctor to ask to go on them longterm, before I lose my mind! My tingle/prickly sensation is mainly on my outer labia. It isn't severe, maybe because I have type 1? Im not sure. I only had a bad first outbreak then the second one wasnt too bad apart from that severe itching you were talking about. I wanted to cut parts of me off!!

When I wear a skirt I feel nothing at all tinglewise. But if I have trousers on after about five mins of sitting it starts up. Sometimes only slight, other times quite intense. Its all pressure related. Occasionally I feel a sharp pain up the top of my inner thigh but not often. I think I may be having an outbreak at the moment, one little bump but its hard to tell, could just be a spot or ingrowing hair.

I know stress is a major factor but its really hard not to stress. I am studying for my dehtee right now and working so its hard to avoid. I feel like I won't have a relationship again. Are you in the US or UK? I am in the UK and its not so common hrre. I got this from my last boyfriend who must have had a coldsore though neither of us noticed. Now we are split up I am freaking out!

I really hope that the doctor will agree to longterm antivirals. I almost forgot I had it for two years and I wish I could again! I am really scared to have sex. I know type 1 is less likely to pass on but obviously when I have symptoms I am far more likely to.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
TheOriginalScooter
Member since Aug-29-10
30 posts
Mar-02-12, 06:32 PM (CST)
Click to EMail TheOriginalScooter Click to send private message to TheOriginalScooter Click to view user profileClick to add this user to your buddy list  
8. "RE: PHN and Genital hsv type 1"
In response to message #7
 
   Be tenacious until you find a doctor that will give you an rx for antivirals. A friend introduced me to buying my valtrex from Canada. A 6 month supply was about $300 bucks which would be much more in the US where I reside. (It's also better for your insurance at least here in the states - when I was shopping for insurance my rate increased because I had a recent outbreak) Acyclovir would work as well. Your GHV1 should calm down easier than my GHSV2. The fact that your symptoms are on the outside to me indicates it's probably phn. And that's the way it goes - I had several weeks of feeling fantastic then I got too comfortable and started skipping my valtrex several times a week. Then I had a "really painful" outbreak and it reminded me of why I take my meds everyday!

That makes sense I always felt better when I wore no underwear with long dresses to work. Herpes is similar to shingles any type of cloth on the area where the nerves are aggravated will aggravate them more. I don't think you need antivirals "long term" most people with GHSV1 don't. But if what you're experiencing is H, then you need to hit it hard REALLY HARD until the virus stops replicating. I like the valtrex more than any other antiviral because it works "best for me". It really packs a powerful punch and stays in your blood stream longer. See if you can get an rx for valtrex then you can hit it hard with several doses for a few days and or maybe a week. Get it to shut up that's the goal.

In my 4 yrs with H, I have learned that if I can get it under control and keep it under control, that works much better. My pain management doctor once made the comment "you have to manage your pain". I never forgot that statement because I have other injuries that I struggle with and that statement really hit home. He's right!

You will feel better sometimes it just kicks up it's ugly face and it's not so fun. And yes stress may trigger it because it lowers your immune system but I'm not convinced that's it's all stress. The job of a virus is to "replicate" that's what it does. Sometimes an outbreak is not stressed induced it just happens.

I met a girl on this site who had GHV1 and for the first year really suffered. The next time I spoke with her she was getting married Don't let this virus stop you get on with your life. I have few good male friends and they still hit on me. And these people know me really well and all my horror stories about H and I still find it "perplexing" they want to have sex with me. So don't worry about that, just be honest and it will work out the way it is meant to work out.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Mar-02-12, 07:00 PM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
9. "RE: PHN and Genital hsv type 1"
In response to message #8
 
   I guess I am quite lucky being in the UK as we get all our medication paid for by the NHS. I have an appointment next week to see the doc so I will make sure I don't leave without agreement for some meds! I was given aciclovir the first time this happened and it just went away after a few days and that was that. They will probably give me the same thing again. You can buy aciclovir online but it's pretty expensive so I hope the doctor agrees. Here you are limited to which doctor you can go to by the area you live in, though there are sexual health clinics around the city I live in. I could try a few if the first I see don't agree! This doesn't seem to be a disease that the doctors know a huge amount about. I have read so much about it and there aren't any studies past 3 years for GHV1 since it rarely flares up past that time. That's why I am so annoyed and frustrated that I have been suffering with it for nearly 6 months.

I think it is getting slowly milder but I can't really relax because it's always there peeing me off. I think it was stress related when it came back last year. I went through a break-up, house move, started a new job in a new city and had to sit a really important exam all within the space of two months, it was obviously too much stress for my immune system to handle. I had gone through other stressful periods previously and had no sign of an outbreak. I had a few weeks of tingle, but didn't get what was going on since I'd only ever had a primary outbreak which was horrendous and nothing like the second one.

I'd hate to pass this on to anyone else, especially if they are as much as a stresshead as I am. It's quite a worrying and upsetting thing! I heard about this happening to my friend's sister recently and it makes me wonder how many people secretly suffer from it.

Thanks for your replies, you have made me feel a lot better. I will let you know how I get on and if my tingling bits finally settle down. If I am lucky, it will never come back, or maybe just one more time so the statistics say. I hope I am!


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
Lenoreadmin
Member since Oct-22-04
4279 posts
Mar-03-12, 09:45 AM (CST)
Click to EMail Lenore Click to add this user to your buddy list  
10. "RE: PHN and Genital hsv type 1"
In response to message #9
 
   I would have the doctor test you again for yeast since you're having a discharge like thrush, just to be on the safe side. It would be a shame to be barking up the wrong tree.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Mar-03-12, 11:14 AM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
11. "RE: PHN and Genital hsv type 1"
In response to message #10
 
   They will probably screen me again for everything, but I think the tingling really points to hsv. My gp said the main thing with hsb is the pain and tingling so refrrred me to the sexual health clinic to ask for antivirals. I have had thrush before, but it was different kind if itch.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Apr-13-12, 03:23 PM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
12. "RE: PHN and Genital hsv type 1"
In response to message #11
 
   The saga continues......I went to my local sexual health clinic and told them my story. They examined me again and did more swabs (and a smear that came back abnormal so a nice trip to the hospital for me, I have all the luck!). I was clear for chlamydia etc and no signs of thrush, also no signs of herpes. The doctor thought that I have PHN as no blisters, swelling or other problems apart from the pressure-related pain. She said she would refer me to the pain clinic and did not think the virus is active.

Got a call after I left the clinic from another doctor there who had been discussing my case. She thought I might have an underlying infection so I was prescribed aciclovir for a month. Cut to one month later - still got the discomfort though for the firstweek I took the meds seemed to be getting better.

Went in for follow up. Doctor gave me two more months supply of aciclovir to take to rule out for sure that herpes is active and I am to go in for another review. Strangely first doctor said I shouldnt worry and that herpes probably never come back now I have had two outbreaks. Second doctor less optimistic and said it could be flaring up still, however I find this unlikely since I only get pain with pressure and no other symptoms. So possibly being sent to pain clinic to get amtrypoline for the nerve damage if this final lot of aciclovir makes no difference which I doubt it will. Now I also have the worry of my colposcopy which I had once before and is horrendous, then wait on results of that.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
freeus03
Member since Aug-7-12
24 posts
Aug-07-12, 04:33 AM (CST)
Click to send private message to freeus03 Click to add this user to your buddy list  
13. "RE: PHN and Genital hsv type 1"
In response to message #12
 
   hey fedup123,

I am trying to figure out how things turned out for you. I have been haing some pretty severe nerve issues and am trying to determine if things are going to go away. It has been almost 1 year now, and I have had constant genital, leg, and buttocks pain. The nerve pain is pretty severe (sometimes worse then others), but never completely resolves. Since exposure I have also had pretty frequent urethra pain. I have GHSV1 and have been to some many doctors at this point it is unreal.

Again, how are things going for you and what helped?


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Aug-07-12, 05:35 AM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
14. "RE: PHN and Genital hsv type 1"
In response to message #13
 
   Hi freeus03,

It is still an on going problem for me. I took aciclovir for three months to rule out the pain being an active infection. Since the pain never stopped at all the doctor diagnosed vulvodynia which was probably triggered by the herpes but she said may have happened to me anyway (i doubt this very much!). I felt as though maybe 50% of the time I was feeling the PHN and that it was getting better. Saying that, in the last week it has gotten worse and I have had a bit of pain in my urethra (usually only have nerve tingling and pain in outer labia) so I am taking a course of aciclovir at the moment in case this is the start of an outbreak.

The doctor basically said that the nerve damage is something I have to learn to manage. Mine isn't severe so she didn't refer me to the pain clinic, but if yours is then they should be referring you and treating you with the appropriate medication. Apparently it can take up to a few years for nerves to heal after damage by herpes which is pretty depressing. One doctor implied to me that I am stuck with the PHN for life though from reading on this forum it looks like it does go away eventually.

My doctor recommended pelvic floor exercises, pilates and vulvar massage to help with the PHN. I am going to start taking lysine again too. Have a look at the vulval pain society website www.vulvalpainsociety.org. This really drives me crazy and stresses me out and still scared to start a new relationship because of it but still holding on to the hope that it will go away one day! Hope this helps.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
freeus03
Member since Aug-7-12
24 posts
Aug-09-12, 05:35 AM (CST)
Click to send private message to freeus03 Click to add this user to your buddy list  
15. "RE: PHN and Genital hsv type 1"
In response to message #14
 
   Hey fedup123,

So, it has been ongoing now for about 8 months for you? Any sign of improvement? I am going on 1 year and no sign of things letting up. I am male so do not think vulvodynia applies.

Anything that helps or hurts? Have you been in contact with anyone that has experienced this for as long as we have and it suddenly resolved?

Pretty depressed right now. I am holding out hope that this will subside. I have constant leg and buttocks pain (skin really seansative to touch), down my inner thighs, in genitals, down the back of my legs, and my buttocks. Hoping this is not going to last more then 1.5 years becuase at that point probably going to give up on it ever getting better.


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Aug-09-12, 05:51 AM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
16. "RE: PHN and Genital hsv type 1"
In response to message #15
 
   The massage might help you a bit. If you massage the areas of skin that are sensitive it does kind of take your mind off the nerve pain. I find cold helps a bit so a cold sports pack might help you out. I haven't really spoken to anyone else who has suffered this as long as us. From what I have read it takes about a year for nerves to heal but the doctor told me it differs in individuals and can take longer for some than others.

Mine was getting better for quite a while, barely even noticed it. This recent discomfort must be attributed to something else as the aciclovir course did not affect my symptoms. I may have thrush or another female problem. You should be able to get treatment from the pain clinic with low dose antidepressants for your pain. Think the drug is called amtrypoline.

As far as I can tell the studies on genital HSV1 don't go past three years since most people don't have any issues after this time. I live in hope!!


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
bob12
Member since May-15-12
43 posts
Apr-24-13, 09:40 AM (CST)
Click to EMail bob12 Click to send private message to bob12 Click to view user profileClick to add this user to your buddy list  
18. "RE: PHN and Genital hsv type 1"
In response to message #16
 
   LAST EDITED ON Apr-24-13 AT 09:41 AM (CST)
 
fedup123,

I have genital HSV1, swabbed positive. I've also never had a positive blood test, even after trying in vain for a year.

For almost two years I've had a low-level irritation, probably like you describe as tingling. The only time it goes away is when my skin gets sensitive and has a rash, which is when I was lucky enough to get swabbed.

My "theory" and it's only that, is that my atypical symptoms are caused by an immune response from a similar herpes family virus. The immune response is adequate to crush the virus, but not completely clean it up.

When the tingling you describe is present, I don't think the virus is active. I believe it's a histamine response to the incomplete, but adequate antibody response. I've commented before that Benadryl can sometimes, but not always tame the irritation. Everyone blows it off as not herpes then, strangely that's what I have.

I have had only atypical symptoms, I've never seen a blister. I've been tested for everything under the sun, had a biopsy, taken yeast medication, everything. The only thing ever found was HSV1 on my area of sensitive skin.

-----------------------------
- HSV1 by culture @11 months
after initial outbreak
- 13 negative IgG tests up to
11.5 months
- 1 negative Western Blot
- Antivirals for the first
time
at 11.5 months


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top
fedup123
Member since Jan-13-12
11 posts
Apr-24-13, 10:00 AM (CST)
Click to EMail fedup123 Click to add this user to your buddy list  
19. "RE: PHN and Genital hsv type 1"
In response to message #18
 
   Update on my situation is that it pretty much doesn't bother me anymore. My doctor diagnosed nerve damage which has gradually eased and is practically non existent now. I was having some pain during my ovulation period due to the nerves already being irritated but the doctor gave me the contraceptive injection which stopped this altogether. I've never had another outbreak. Things are good. There is hope!


  Alert | IP Printer-friendly page | Edit | Reply | Reply With Quote | Top

Conferences | Topics | Previous Topic | Next Topic

 

Advertisements appearing on this page do not constitute any endorsement of 
those products or services by HHP or its management.

All opinions expressed here by the HHP, its management and participants constitute just that, opinions.
No medical relationship with any participant is implied in any way.
Each individual's personal doctor is responsible for the medical advice and care of that person.