I was interested to read in another post that some genital herpes suffers experience a lot of post-herpetic neuralgia, normally suggestive of herpes zoster.
I have been suffering from pain for three years without knowing that I had contracted HSV from a former Thai girlfriend who failed to tell me about her condition. From the start of catching HSV, it caused me severe erectile dysfunction.
Recently I was given Neurontin and then latterly 150mg Lyrica per day. The effect of this was not only to reduce the pain but to bring back morning erections and former lost sensation. It worked extremely well. However, after a couple of weeks the positive effect on sensation has entirely worn off, although the pain is still reduced, leaving me almost where I was before.
I am trying to find out if other guys have suffered erectile dysfunction as a result of genital herpes. I think my problem is that for three years I have been suffering recurrent attacks of herpes without knowing, since the only symptom I get is sore and red glans and foreskin, and occasionally pain in the urethra. I was repeatedly diagnosed with candida and skin-related problems. Since I have not until recently treated the herpes with Acyclovir, it appears that I have lived for three years allowing the herpes to continually attack me and cause nerve problems.
I would be especially keen to hear if any other sufferers have eventually got their feeling and sensation back, if managing to hold back the herpes attacks. Many thanks.
Try to keep your stress in check. That's the real trigger (at least in my experience). Don't look at it like herpes is 'continually attacking' you. When it's not outbreak time, it simply goes dormant until the next outbreak.
Thanks very much for the reply Amadeo. I'm still trying to understand this virus, because although I believe I've suffered with it since 2008, it was only very recently that a good dermatologist diagnosed my pain as 'post herpetic neuralgia'. I had basically been living with it for all this time.
I think one of my problems is learning about the attacks. It seems that I have been in so much discomfort all this time, that the herpes attacks have almost been constant. They have effectively made my 'private' numb from the constant pinching and gripping pain.
So, once I started to suspect it was herpes, after the dermatologist's diagnosis, I started taking Acyclovir. But as soon as I stop taking it, two days later, I start getting worse pain. I have to keep going back on it again.
Will the pain go away eventually, if I keep using suppressive therapy?
We probably have different strains or at least our bodies are reacting to the virus differently. For me, I use acyclovir cream when I start to feel that familiar throbbing/tingling. And once in a long while will hit it with Acyclovir 200 mg for a day at most (even though the standard regimen is like 5-7 days) and the tingling will go away. It rarely gets to the point where it can be called painful for me. Sorry I couldn't be more helpful.
I have had herpes for almost 30 years, and I have lived a perfectly normal sex life with the exception of taking extra precautions to protect my partner. I have never taken any medication for it except for the first 6 months after I was diagnosed with it.
The only physical problems I have are back aches just when Im about to have an outbreak, and of course the area where the outbreak occurs. Early on my lymph glands would swell as well, but not any more.
For me, both the number of outbreaks and the severity of pain associated with outbreaks have reduced through the years. Early on I remember the outbreaks seemed one after another, and the pain was horrible. But through the years it has gotten so much better.
Now, that doesnt mean it has always been that great. Just recently I had one of the worst outbreaks I have had in many years. But those are few and far between.
When you have an outbreak, use caution to keep from spreading it to other areas. Wash your hands, be careful towel drying, etc.
My summary of living with this disease for this long is that it's just an annoying inconvenience from time to time. Thats about it. Hope this helps.
Thanks for this reply and the advice you've given me. In my case, it has caused PHN (Post-Herpetic Neuralgia) and until recently being treated for this, the skin had been painful to touch for nearly four years. Nobody has ever been able to successfully diagnose what it is. Sometimes on occasion I have had very clear penile discharge and thought I had an STD. However, urologists said it was prostatic fluid and not bacteria.
Essentially for nearly four years I have lived with nerve pain without knowing what had caused it. This has caused erectile dysfunction almost immediately from the time I was exposed to the virus. So, for that problem I have been taking regular doses or L-Arginine. Unfortunately the L-Arginine has caused outbreaks during the past year which didn't happen very often before taking it.
In Thailand doctors are usually not very thorough and if they don't diagnose something on face value, they rarely will endeavour to do anything more. I have suffered as a result of this. And nerve damage has resulted from the outbreaks.
I can only presume that the 'type' of herpes virus I have, is the sort that causes nerve damage. The neurologist has told me that the pinching pain in the organ is referred pain, and that it is the virus in the sacral ganglia that causes it. Neurontin and Lyrica medication have almost entirely reduced the pain, but with the exception of helping at the beginning of taking the medicine, it has not the erectile problems. I wish it were not so complicated in my case.
I am a doctor 33 years old, I first had an outbreak of hsv 2 in march 2012, I did the diagnosis at that time. In summet I have had another outbreak.
But since 2 months I feel pain in the external part of the right thigh, about 3/10 in intensity. It can be a very disturbing pain. sometime it moves to the right leg, tometimes it goes to the right leg.
Yes as you it is post herpetic neuralgia. When the neuralgia lasts a long time after the outbreak of hsv then it is post herpetic neuralgia. I did the diagnosis alone and I didn't talk about it to anyone except my girlfriend, and I asked her to test her, and she discovered that she was hsv 1 and 2 + but she has never had any outbreak, she is asymptomatic.
I have never experienced erectile problems.
I don't know how the pain will change with time (months, years).
What I can tell you is :
- the pain don't decrease with the valaciclovir or aciclovir (studies have shown it)
- but the outbreaks of hsv 2 decrease in number and intensity with valaciclovir or aciclovir, so, personally I have decided to take a daily medication of 1g valaciclovir per op, because after the outbreak the neuralgia is worse, and probably the outbreak hurts the nerves.
But an important information is : the quantity of valaciclovir per os that you take don't change the frequency or intensity of the outbreaks of hsv 2 SO 1 g daily is enough, don't loose all your money in valaciclovir, it will not add any beneficial effect (I have found an excellent recent study which showed it).
- Finally, I don't know peronally the evolution of the post herpetic neuralgia post hsv 2 because it is not well studied. The pain of neuralgia post hsv 2 is usually asymetric, and some people experience pain of one side of the body. I think this problem will be more and more studied because hsv 2 is more and more frequent in the population, also the research for a vaccine and for treatment is important and I am sure that soon new medication will appear.
I hope that these advises will help you.
I would be glad to know how you feel now and how is the pain, and which treatment you have done.
I have suffered form HSV2 for 50 years. In the beginning I had no idea what was occurring and doctors identified the virus as a canker sore, without any medication other than bacterial cream. Many years and many outbreaks later I received a correct diagnosis and was prescribed Acyclovir 200 mg 4 times a day. I followed this procedure whenever I first felt oncoming symptoms with success. As I aged the frequency of occurrence dropped off, but never ceased. I would experience about 4-5 outbreaks a year usually brought on by stress or intercourse. Now I'm in my 60's and I’ve started having prostate problems. I even believe I may have internal scar tissue that affects urine flow. To reduce a swollen prostate I underwent antibiotic treatment for one month and switched meds twice due to muscle pain and burning skin associated with sulfur based antibiotics. What I didn't associate was I was having the worse occurrence of HSV2 I've ever experienced. I thought for weeks the pain in my groin, legs, rectum, and severe burning on the bottom for my left foot was being caused by the antibiotics and prostate problems. I then experienced severe sharp pain in my left side groin going down to my left testicle. I knew this pain was different so I immediately went to my family doctor. He felt I had a hernia on my left side and ordered a CAT scan. Not until two days later did a lesion appear and then knew I was experiencing a severe occurrence of herpes virus. I went back and my doctor prescribed 1 gram of valaciclovir for 10 days. I took the medication for five days and the symptoms decreased to almost nothing, but now on the 6th day all the symptoms have returned. I have severe burning on the bottom of my left foot and some on the right, pain in my left leg and joints. Concerning the question about "severe erectile dysfunction", I must answer yes I am experiencing erectile dysfunction and loss of feeling in my penis. At times my penis feels extremely cold. I now have many symptoms since Post-Herpetic Neuralgia only gets worse and seems to spread affecting different areas after each occurrence. During previous outbreaks I always knew the symptom and quickly reacted to them. However this time, I was mislead by symptoms that I thought were either prostate related, hernia related, or planter fasciitis. Not until the burning and a large lesion appeared did I know I had more than one thing occurring at the same time. Hopefully I can get this outbreak under control and the neuralgia will subside and normal feels will return. Today I will contact my doctor to see if we should change medication since my symptoms have reoccurred after 6 days. For other suffers, and as mentioned by another, the virus affects each differently. I can attest that nerve damage gets worse with each occurrence. Episodes and years will pass and one might believe they have control of the virus, but you do not. It will reoccur. Yes there were times when my frequency of occurrence was seldom and I was fooled by thinking getting older and medications had made the virus weaker. It doesn't happen. I would suggest you stay alert and know your symptoms, and understand they may change. Don't mistake leg pain and burning on the bottom for your feet as being related to a reaction to an antibiotic, or problems with your feet requiring arch supports, or a mild hernia, or your prostrate (perhaps you could have all these as well).