Erectile dysfunction and nerve pain

[New anonymous]

I would Like to share my personal experience and see if anybody else has had this problem happen to them. I contracted hsv last October and almost immediately started having severe nerve pain from the waist down and severe erectile dysfunction. At the peak of the pain I was on 1800 MG of gabapentin. Since then the leg nerve pain has eased up a bit but not the erectile dysfunction.i am currently down to 200 MG . I've been to emergency rooms, Urologist. Neurologist, everything imaginable. Also not to metionbthousands of dollars.Finally i have ended up at a pudendal nerve specialist in Houston tx. I have been diagnosed with a left pudendal neuropathy. I had one nerve block performed with little results, i am scheduled for another one this coming friday. motor and sensory functions are bad besides the constant pelvic and leg pain. I also have beign fasculation syndrome which is horrible hundreds of times a day. I was perfectly fine before all of this healthy 27 year old male. I know that nerve problems are rare with this virus and I seem to fall in a minority. Has anyone had a personal experience similar or can offer any insight? I am absolutely desperate. Thanks in advance.

[WilsoInAus]

They are rare indeed. However you have been addressing the pain using various measures not with great success.

You do not mention antivirals, have you had a course of these to test the impact? It would be rare if the pain is herpes related that antivirals would not have at least a modestly favourable impact.

What was your diagnosis? Do you get outbreaks?

 

[New anonymous]

Hsv2. And yes I did the initial 10 day Valtrex upon the outbreak. After a further month or so I got on suppressive therapy to see if that would help for about a month and a half. It did nothing. So I discontinued. No difference in pain or symptoms. I am absolutely at a loss. I have found a few with the same problems but no answers. Is it possibly an immune response to the virus damaging the nerve upon initial infection?  I have no clue. The outbreaks are rare only 3 since October the last in late January.

Edited March 17, 2017 by New anonymous

[WilsoInAus]

Did you swab positive? Have you had a blood test?

Immune disorders can cause the sorts of issues you describe and you need to work through these possibilities with your doctor.

[New anonymous]

Igg test was positive. Working with the pudendal specialist now. Who could have known this could happen by catching hsv. It was always one of my fears and right after a brutal divorce all of this happens. I actually contracted it with a condom. It's got me lower than low could get. I'm completely destroyed and desperate looking for a cure or explanation on how to fix this

[WilsoInAus]

Which IgG test did you have? Type specific for HSV-1 and HSV-2? When did you have the test relative to symptoms?

[New anonymous]

Herpes select for hsv 1 and 2. Although that was last December. I took a more recent test last week that will give me more accurate numbers since I have been off the antivirals for so long. As soon as I get the results I can supply them here.

[New anonymous]

Update..  

I had the second pudendal nerve block performed with better results now. 4 injections on the nerves and so far it is seeming to help with some of the nerve pain. Although the doctor said the pain will probably come back because of the severity that i have been suffering from. My test results have come back negative this time im not sure how. Both for hsv 1 and hsv 2. It was also the wrong test without actual number data. Its very hard and defeating knowing every symptom that i experienced and have seen physically happen to me and having to try to prove it to doctors that continue to say that they have never heard of this happening to anyone. I guess i will try to continue to test and see specialist for answers. Im at my wits end with this Neuro stuff.

[Just want to move on.]

Very sorry to hear of your pain mate, your not alone but the answer is not an easy one to find. For me, I find lysine is helping although it didn't at the beginning. It has helped with the fiery burning feelings on my face and lips and with the urinary disfunction....constant need to pee with burning feeling on my dick. Anti-virals worked at the very beginning but stopped after my first 10 day course. This is daily, none of this once or twice a month reoccurrence for me  

Hope you get better as time goes on mate. All the best.

[WilsoInAus]

Regardless of your herpes status, there is a pretty high chance that these symptoms are the result of another issue. It is important to keep pursuing the possible cause here.

Do you have the test information for the current tests. Sometimes there are no numbers given when the test is negative, simply <0.90 or 'negative'. Do you have the full details? This will tell you whether you need another test or not.

[New anonymous]

Hsv 1 and 2 were both less than 0.90 and came back negative on the most current test. I called the test facility to get actual numbers and they said that type of test was not ordered. . No actual numbers. Although i am 100 percent sure i have one or the other from living and experiencing it and all of my symptoms. And being absolutly perfectly fine before this. Idont have very many outbreaks which makes me think it could possibly be hsv1. And because ive seen some people seem to have more neurological problems more so with this one than the other one downstairs. Its just what i have gathered from reaserch online. I go back to the pudendal nerve specialist on monday. I have dedicated my life to try to resolve this. 

[WilsoInAus]

If the test is for IgG and the results are reported as <0.90 then there were numbers but I imagine the lab protocol is not to report the specific numbers. This is probably because there were to many questions regarding numbers moving from say 0.1 to 0.4 back to 0.2 which is meaningless discussion as they are all negative representing an absence of antibodies.

At this time, testing therefore confirms that you do not have antibodies sticking to the testing wells and hence are unlikely to have either virus. If you want further confirmation, only the Westernblot can do that for you.

It is not correct that HSV-1 causes more neurological issues in the genital region than HSV-2. The likes of Terri Warren do not believe they have seen it at all on account of HSV-1 being considerably weaker in the genital region.

Please do try to resolve this and share your experiences, it may help other people enormously.

[Atrapasueños]

Veo que en Estados Unidos es complicado pedirle  a su médico una prueba de sangre o algún otro estudio 

 

I see that in the United States it is difficult to ask your doctor for a blood test or some other study

[Atrapasueños]

Descarte cualquier otro problema si todo está bien entonces Su problema puede ser por el hsv si tiene un IgG positivo no hay más que decir

 

Discard any other problems if all is well then Your problem may be by hsv if you have a positive IgG there is no more to say

[Seeker1960]

1 hour ago, New anonymous said:

Hsv 1 and 2 were both less than 0.90 and came back negative on the most current test. I called the test facility to get actual numbers and they said that type of test was not ordered. . No actual numbers. Although i am 100 percent sure i have one or the other from living and experiencing it and all of my symptoms. And being absolutly perfectly fine before this. Idont have very many outbreaks which makes me think it could possibly be hsv1. And because ive seen some people seem to have more neurological problems more so with this one than the other one downstairs. Its just what i have gathered from reaserch online. I go back to the pudendal nerve specialist on monday. I have dedicated my life to try to resolve this. 

Hey sorry about your situation. 

First, you are right to suspect HSV as a cause of you neuropathic issue. Here is a quote from a medical article on peripheral nueropathy causes. "

Herpes Viruses

The herpes viruses are double-stranded DNA viruses that can produce symptoms after years of lying dormant. The ability of these viruses to cause CNS disease and transverse myelitis is well documented,¹¹but they also impact the PNS and have been implicated in radiculopathies and cranial neuropathies. Three of these viruses, varicella-zoster virus (VZV), and herpes simplex virus types 1 and 2 (HSV-1 and HSV-2), are neurotropic and reside in neural ganglia."

First, there is disagreement among the research "experts"  some Medical professionals. 

Second, testing is not the most accurate for HSV. HSV1 is missed by tests 25% of the time. Then there are strains of HSV2 that are gd2 deficient and never show up on the test because the body doesnt produce antibody for it.

Third, other factors involving the immune response to the virus can cause nueropathy.

I am not s medical professionals and I caution you not to trust diagnosis of arm chair Internet Doctors. The logical approach along with your Doctors observations from examination will help you get to the bottom of the diagnosis. The problem is if HSV is the trigger for your issues there is not alot that can be done except pain management. There are therapeutic vaccines in the works that look promising but wont be available for a couple of years. HSV529, Theravax and couple of other may be the functional cure.

One question, wss your giver tested?

Good luck in your search answers.

[WilsoInAus]

I think it is a good idea to avoid armchair speculation. Can you please provide a source that confirms that HSV-1 can cause genital neuropathy. The above quote does not even suggest that HSV-2 causes genital nueropathy.

[Atrapasueños]

Cuando yo me infecte me dolía al caminar no creo que sea por otra causa más que el hsv-1  

 

When I get infected it hurts when I walk, I do not think it's for any other reason than hsv-1 @WilsoInAus

[New anonymous]

It was 10 seconds of oral and 10 minutes of protected sex that has led me here. I waited a while to see if things would resolve in time but eventually i confronted my giver. I got the standard "ive had the full screen and im clean". Then during the conversation while i showed her all of my medicine for proof she asked "how do you know that it was me". Never heard from her since.I know for a fact that it was her but nothing more can be done now except to try to fix my problems. As i am typing this i can feel fasculations in legs and my feet keep going numb. This has taken all of my quality of life away.

[Seeker1960]

https://books.google.com/books?id=kr3qDQAAQBAJ&pg=PA86&lpg=PA86&dq=pudendal+neuralgia+hsv1&source=bl&ots=76Dyxov4ja&sig=KSs-L2d_VO2U6tRAdC60RO0NVBs&hl=en&sa=X&ved=0ahUKEwjt9a3FxvrSAhVI54MKHd3jA0EQ6AEIPTAJ#v=onepage&q=pudendal neuralgia hsv1&f=false

Not my words but those of professionals

[WilsoInAus]

I cannot see that her reactions and comments are anything but reasonable and typical. They certainly do not contain an admission that she has an STD of any kind. You have made a serious allegation that your health is impaired due to something she gave you. She has quite rightly challenged you and her comment has inferred at least two things:

- How do you know your issues are related to an infectious agent and not an inherent genetic, degenerative or injury cause?
- If an infectious agent is the cause, what is it and how do you know it came from her (as opposed to earlier from someone else)?

I think these are reasonable questions and fair ones to ask yourself.

[New anonymous]

She was the only one after my divorce. Its the time frame with symotoms immediately afterwards and an outbreak within the following week and being fine before this living hell. i am 1000 percent sure it was her. We are from a small town and she is well known and i should have known better. I will say that for the rest of my life

[Seeker1960]

21 minutes ago, New anonymous said:

It was 10 seconds of oral and 10 minutes of protected sex that has led me here. I waited a while to see if things would resolve in time but eventually i confronted my giver. I got the standard "ive had the full screen and im clean". Then during the conversation while i showed her all of my medicine for proof she asked "how do you know that it was me". Never heard from her since.I know for a fact that it was her but nothing more can be done now except to try to fix my problems. As i am typing this i can feel fasculations in legs and my feet keep going numb. This has taken all of my quality of life away.

How long after this encounter did you symptoms appear? She may or may not know her HSV status and may not want to know.

Knowing her status would have been good. Many of us were exactly like you. Healthy prior to a sexual encounter then suddenly come down with nueropathy and HSV symptoms.

I believe it is a possibility

 

[WilsoInAus]

11 minutes ago, Seeker1960 said:

https://books.google.com/books?id=kr3qDQAAQBAJ&pg=PA86&lpg=PA86&dq=pudendal+neuralgia+hsv1&source=bl&ots=76Dyxov4ja&sig=KSs-L2d_VO2U6tRAdC60RO0NVBs&hl=en&sa=X&ved=0ahUKEwjt9a3FxvrSAhVI54MKHd3jA0EQ6AEIPTAJ#v=onepage&q=pudendal neuralgia hsv1&f=false

Not my words but those of professionals

But the article quite correctly only states that it "may" in deference to the fact that it is unsubstantiated opinion. It also only refers to vulvar pain as being the unsubstantiated possibility  There is no reference for the statement that confirms it is the authors opinion. It is not one shared by the likes of Hansfield, Wold and Warren who have more specific HSV knowledge, expertise and experience than the authors of this particular document.

But that is not an issue here. It is important that our readers actually have some facts to assimilate in order for them. Here goes some statements that embody the facts for the OP's specific circumstances:

1. There is in excess of a 99% chance that the pudenal nerve issue is related to a cause other than herpes.

2. There is a question as to whether any infection from the lady in question actually took place.

I think these are fair statements that may help guide future actions for an individual that is clearly experiencing physical pain and some emotional issues. I think this is better than attempting to prove an individual personal view of something that to this point lacks any evidence.

 

[Seeker1960]

Where do you get the 99% from? Also are you aware that there are at least 30 members of this forum all with similar stories with a sudden onset of neuropathy after exposure to HSV? Coincidence that other Herpes viruses cause PHN and HSV is so well behaved? DR Halford doesnt believe it to be the case. Where is the proof the shingles causes PHN? People get the rash and then the pain lingers? Same with HSV they get infected or a reactivated and also are left with PHN.

Anyone who has this know this is not caused by some other undetected condition. They go through a myriad of tests only to come up positive for HSV at some point either by swab or blood tests. 

Cant believe such smart people like yourself cant connect the dots.

For all the research Wald, Warren and Hansfield claim they have not advanced treatment, testing or vaccine development at all. Yet make claims of infinite understanding of how the virus acts. Terri Warren did not even know that various strains of HSV behaved differently and some were Neuro invasive and others were not.

The book of knowledge of HSV has not been completed yet. Just because HSV nueropathy cannot be proven because no method exists to prove it doesn't mean it doesn't exist. 

The HSV world is not flat as some learned people think. It is multi dimensional and stealthy virus that can invade the CNS in some well documented cases.

[WilsoInAus]

2 hours ago, Seeker1960 said:

Where do you get the 99% from? Also are you aware that there are at least 30 members of this forum all with similar stories with a sudden onset of neuropathy after exposure to HSV? Coincidence that other Herpes viruses cause PHN and HSV is so well behaved? DR Halford doesnt believe it to be the case. Where is the proof the shingles causes PHN? People get the rash and then the pain lingers? Same with HSV they get infected or a reactivated and also are left with PHN.

Anyone who has this know this is not caused by some other undetected condition. They go through a myriad of tests only to come up positive for HSV at some point either by swab or blood tests. 

Cant believe such smart people like yourself cant connect the dots.

For all the research Wald, Warren and Hansfield claim they have not advanced treatment, testing or vaccine development at all. Yet make claims of infinite understanding of how the virus acts. Terri Warren did not even know that various strains of HSV behaved differently and some were Neuro invasive and others were not.

The book of knowledge of HSV has not been completed yet. Just because HSV nueropathy cannot be proven because no method exists to prove it doesn't mean it doesn't exist. 

The HSV world is not flat as some learned people think. It is multi dimensional and stealthy virus that can invade the CNS in some well documented cases.

What is the relevance of this? There are 5 billion people on the planet and you think 30 stories, most unsubstantiated, somehow proves that neuralgia is common and exists?

Dr Halford does not believe conclude nerves are damaged by nerves, but does refer to signal disruption as resulting in pain.

PHN from VZV has been proven through physical examination of nerves. Your argument makes no sense regarding HSV as nerve damage has not been observed and isolated to HSV 1/2.

Your statements are just so grandiose. No book of knowledge is complete and this hence doesn't mean that things exist or do not exist. You can only go on what we know and the probability of it being right.and help people with this data and slavishly follow some personal belief in such a low probability event affects everyone who comes to this site talking of nerve pain.