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Subject: "Endless pain"     Previous Topic | Next Topic
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Sigi
Member since Mar-8-13
5 posts
Mar-08-13, 11:36 AM (CST)
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"Endless pain"
 
   Dear all,

This is my first entry on this site. I would be very grateful if you would provide some advice or share your experience with me. I am very desperate at this point in time.

I had a sexual encounter in August 2011, three days after which the pain in my genitals started, and did not stop until today with only some days in between that were a bit better.

I got tests for all possible STD and they did not find anything. Three ELISA tests were negative for HSV2 (I have HSV1 on my lips since childhood).

My glans has been inflammated basically for the last 18 months. Some days a bit better, then it gots worse again. I have sometimes tiny red spots on it, or "paper cuts" or other strange things.
Blisters I had only once last time last summer, when I got huge blisters on my glans and foreskin that disappeared after some weeks. A PCR test did not show any HSV.
Worst of all is my nerve pain. My glans became hypersensitive. Often burning pain in my testicles, anus and in my right thigh down to the knee. I am also in psychologial treatment (he thinks this is all psychosomatic, but it is for sure not) and I am taking anti-depressants and nerve pain killers (Cymbalta, etc), but nothing, including Valtrex, really helps. I am living in Austria and will now send blood to Portland to have done a Westernblot.

I have the feeling that the herpes viruses are doing what they want down there and this every day. Even light pressure on my testicles start the attack and pain. I do so seldom have no pain that I cannot relax anymore. No vacation, no weekend without pain.

Does anybody have similar experience? I hope I receive some support so my hope is not fading ...

many thanks and kind greetings from Vienna, Austria.


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  Subject     Author     Message Date     ID  
  RE: Endless pain TheOriginalScooter Mar-20-13 1
     RE: Endless pain Sigi Mar-25-13 2
         RE: Endless pain TheOriginalScooter Mar-26-13 3
             RE: Endless pain Sigi Apr-08-13 5
                 RE: Endless pain TheOriginalScooter Apr-18-13 6
                     RE: Endless pain Sigi May-13-13 7

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TheOriginalScooter
Member since Aug-29-10
30 posts
Mar-20-13, 09:03 PM (CST)
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1. "RE: Endless pain"
In response to message #0
 
   Hi,
Don't give up hope if it is herpes your body will eventually get a better handle on the disease and the pain will diminish a great deal. Without a definitive test one cannot with certainty say it is herpes, but it sure sounds very much like herpes.

Swollen glands in the groin, paper cuts, nerve pain in the boxer short/bikini area is what I had for a solid 3 years after contracting the disease. At times it was all unbearable. Have you ever tried an anti-viral medication?


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Sigi
Member since Mar-8-13
5 posts
Mar-25-13, 05:39 AM (CST)
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2. "RE: Endless pain"
In response to message #1
 
   Dear Scooter,

I am very grateful for your encouraging feedback. I do hope that the worst is over for you and you don't have any pain anymore.

These have been the worst 18 month of my life, a year ago it was extremely bad with the pain, I had to leave work for one month, was crying in the job because of the immense pain. They then hired a co-worker for me, so the work load is not as bad anymore.

I had the feeling that anything is triggering an outbreak (sexual activity, cycling, wearing tight cloths, etc.), I had for a very long time the feeling that I am living in one single everlasting outbreak.

Over the last 10 days I had two times 3 days where I almost did not feel any pain, but only itching, so I could relax a bit.

Besides the nerve pain the biggest issue is that my glans (the part that is covered by the foreskin) is inflammated basically every day. Some days more, some days less, but you always see that something is wrong.
I was also taking and am sporadically taking Valtrex, with little effect, the pain did not get better neither did the inflammation of my glans.

I now sent serum to the University of Washington to have the ultimate blood test. I will let you know of the outcome soon.

kind regards, Siegfried


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TheOriginalScooter
Member since Aug-29-10
30 posts
Mar-26-13, 08:18 PM (CST)
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3. "RE: Endless pain"
In response to message #2
 
   Siegfried,
Herpes as a disease is an enigma. It if often unpredictable and does not follow text book application as the scientists would like us to believe. There are also many faces to the disease. IT WILL get better with time but you will have moments when it does not respond to antiviral medication and has a mind of it's own. When you apply the mechanics of the disease to the medication it does not surprise me that 1) there is too much of the virus for the antiviral med to continually respond and 2) the medication has to trick/fake the cell receptor into believing it is attaching to the actual cell and this cunning and insidious disease can tell the difference.

If you in fact have herpes your response, in my experience is not atypical, the skin can stay chaffed and irritated for long periods of time and I have had outbreak after outbreak. I'm sorry you had to take time off work due to the pain. I have so been there. I lived for those moments when I could get my clothes off when I got home from work and the days, when I was for the most part, pain free.

In my experience with this disease after having it for 5 years - and I still take meds everyday - it is peaks and valleys. More than ever, I am so much more grateful for my quality of health. Nerve pain is such a strange animal and this disease attacks the sensory portion of the nerve and there is NOTHING like nerve pain!!

Please keep me posted on how you are doing and your test results.

Ciao and God Speed
Scooter


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Sigi
Member since Mar-8-13
5 posts
Apr-08-13, 05:29 AM (CST)
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5. "RE: Endless pain"
In response to message #3
 
   Dear Scooter,

thanks so much for your knowledgeable and compassionate lines.

I now got the results back from Westover Heights (Westernblot test done at the UW). The found no HSV2, but they found HSV1. I am HSV1 positive since childhood, but I believe I also infected me on my genitals with HSV1.
In Vienna a virologist told me that there is several strains of HSV1 and one of these strains could have hit me.

Last week I again had strong itching all over the genitals and burning in my testicles and my anus, not that bad as I had it before, but still. And the redness on my glans is always there with slight nerve pain in my penis every now and then.

The next thing I will do is some longer term swabbing. Westover offered this to me. I will collect swabs for 14 days and then send over to Portland. This for about 3 months or so.

My last outbreak I believe was caused by training on my home bike ergometer.

Scooter, It seems that your pain is quite under control at the moment and that you are doing relatively well, is that right? I wish you many painfree days.

I - completely as - you was living for the few painfree moments in the last 20 months. Now it seems overall the pain level gets less but I feel much more itching now. Seems before with all the pain I did not "listen" to the itching.

kind regards,
Siegfried


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TheOriginalScooter
Member since Aug-29-10
30 posts
Apr-18-13, 08:02 PM (CST)
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6. "RE: Endless pain"
In response to message #5
 
   LAST EDITED ON Apr-18-13 AT 08:07 PM (CST)
 
You are most welcome Sigi. We all want to feel hopeful about the future and pain free. You seem like a very conscience person much like myself and those traits propel us to find answers to our questions and be in control of our destiny. They are also indicative of a person that is responsible. I am sorry you are going through this long process of testing but at the same time you have my admiration for being a responsible individual.

Life for me - it's not perfect I'm not going to sugar coat it. Some days after having the disease for 5 years and taking 1gram of valtrex everyday, I wonder what the hell the med is doing and if it's working. For the most part I typically have a symptom everyday, either an itch or a burn, but do know as a woman hormones play a role in aggravating the virus. Some days I have intense itching but it subsides much quicker. I know if I kick up my valtrex it will back off the replication but am still perplexed as to why the virus still has so much power.

I am over the emotional disillusionment of the disease and live in acceptance. It is part of my life, it is what it is, and I just deal with it. I do not have anywhere close to the pain I had in the first 3 years and it no longer consumes my every waking thought, my search for answers, and a way out of the pain. It does complicate relationships but have also found that relationships are complex in the absence of the disease.

Hopefully you are being treated by good doctors in Vienna. I enjoyed my time in Vienna and bought a scarf in Salzburg many years ago.

Godspeed

Scooter


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Sigi
Member since Mar-8-13
5 posts
May-13-13, 04:20 AM (CST)
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7. "RE: Endless pain"
In response to message #6
 
   Dear Scooter,

Thanks so much for your kind feedback.

Seems that there is a lot of activity ongoing to develop new treatments.
A person who is on the Pritelivir clinical trial 2 was making interesting comments, seems the new pill is way better than Valtrex.

http://herpes.supportgroups.com/sg/herpes/pritelivir-aic316-phase-ll-study?page=1


I found out that whenever I eat Quinoa (rice of the Inkas) I feel much better the next days. I always make a bigger portion and then mix it with different ingredients over some days. Try it and let me know if it helps you too.

Nice to hear you liked Vienna. I was several times in Boston and last year in OC California, all on professinal trips. Great country.

kind regards
Sigi


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