Connection of genital herpes and pudendal neuralgia

[KenP]

Hi, I noticed that most of you are women here. I was told recently about a connection between PN and genital herpes.

I mysteriously started to have sitting pain about 13 years ago. It was after we'd moved and I was "going 90 to nothing" at the new house and yard. After one month, I'd developed true and permanent sitting pain.

I contracted G herpes from my wife after a few years of our marriage. I didn't think it was that big of a deal. The actual symptoms are a mere nuisance to me, in the scheme of things.

I'd like to know where the science (or the doctors) are who've decided that genital herpes can cause PN. I had unsuccessful PN surgery about 9 years ago. I am gradually getting worse over the years, am on disability, but am interested in getting some pain relief. I've never taken anything for herpes. I was barely even diagnoses by any doctor, just figured that was what it must be (small town, you know).

Does anyone have any advice for me? I know tons about PN, who all the players are, etc., so I can lend some advice about that. I did recently hear one doctor say that if you have g herpes that you aren't a surgical candidate for the PN surgery. I'd never heard that in all of my years of being around the "PN circles". I saw it mentioned by someone when I was reading on this forum tonight, so I'm thinking it must be the same doctor (Hibner from Phoenix).

Thanks for any help any of you can give me. Sorry for busting in on what seems to be a mostly women forum, but I'm just looking for some good advice and direction.

Ken

[ICNDonna]

This is a forum for people with interstitial cystitis, VV, or other bladder diseases. I'm sorry, but I don't have much information regarding herpes.

Donna

[sailawaygrl]

We do have the PNE section though, don''t we??

[ICNDonna]

Yes, we do --- I'll move this thread there so there may be someone who knows about any connection.

Donna

[Mothergoose]

Ken men are just as welcome here, it just seems to be mostly women so a lot of the info is about women but IC info applies to both. I sorry but I don't know anything about your question. But it is interesting. You don't hear of people with herpies on their lips haveing any sort of nerve problem, but on the other hand it does stay on a nerve path it is not difuse.

I will go to the PNE section, and keep up with your posts.

MG

[KenP]

This is a forum for people with interstitial cystitis, VV, or other bladder diseases. I'm sorry, but I don't have much information regarding herpes.

Donna

I only made my post because the following post was made on this forum.

Ken

http://www.ic-network.com/forum/showthread.php?t=52591

[ICsmiles]

I had PNE surgery 3 weeks ago, performed by Dr. Michael Hibner at St. Joseph's Hospital in Phoenix, AZ.

I already feel better! However, as nerves heal very slowly, I know it will take months to know the real success of the surgery, so I am trying to not make a big pronouncement until at least 6 months have passed. However, already I can stand and walk without the horrible pain I was having before. The agonizing, 24-7 pain on the left side of my vulva and my left leg is gone! I feel like a new person, with hope for the future for the first time in years. I still have IC symptoms, but I am hopeful that as my pudendal nerve heals, that the inflammation it has caused in my bladder will calm down too.
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As far as herpes ----- I wanted to let you know that at no time was herpes discussed as a reason to rule me out as a candidate for PNE surgery. I didn't know that was possible and am so thankful I didn't, because it would have caused me a lot of worry and anguish.
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The results of my surgery show that no amount of physical therapy or other non-invasive modalities could have helped my symptoms. My pudendal nerve on the left side was entrapped by significant scar tissue, so much so that it was "stuck" to the sacrospinous ligament near my sacrum. I was told it was no wonder I was in so much pain with that severity of entrapment.

It took me many years of ruling out everything else and much suffering before I became a candidate for PNE surgery. By the time I had the surgery I was bedridden, totally dependent on pain medication to get through the day, with the left side of my pelvis packed in ice 24-7, and a heating pad on my bladder. It was the only way I could find relief from screaming pain. I had been told by some well-meaning, but mistaken, doctors, that the surgery was harmful, and I should never follow that route. However, I became progressively worse until my quality of life was gone, and I didn't even want to wake up to another day. I began researching PNE, and the surgeons who are doing pioneering work in the field. I decided to go with Dr. Michael Hibner after much research, including talking to patients who are improving and getting their lives back. All of them expressed their gratitude to Dr. Hibner and his dedication to helping PNE patients.

It took 15 years since the first onset of my symptoms to get to that point, however, Most of those years were spent being treated for IC - 2 hydrodistentions, Elmiron, Atarax, and all the treatments both western and eastern medicine offered.

I always felt like shards of glass, or knives, were in the left side of my pelvis, just to the left of my urethra. I was told by IC doctors and my urologist that this was "referred pain" from my bladder. When my left leg got so bad I was limping, I knew it wasn't IC, and began researching pudendal neuralgia.

I have seen many specialists, first for IC, then in the past 3-4 years for pudendal neuralgia. Never was herpes implicated as a cause of PN or IC. At one point during aggressive physical therapy I began having herpes outbreaks (usually I go as long as 1-2 years without any outbreaks, and my symptoms are always mild). At that point, it was decided to stop the PT until my symptoms subsided and to take oral antivirals, which stopped the outbreaks. This was over a year ago, and I haven't had any since.

Also, before seeing Dr. Hibner, I saw Dr. Jerome Weiss in San Francisco, one of the top PN and PNE specialists in the world. He does not do the surgery, but does non-invasive treatments like nerve blocks, dry needling and physical therapy. He also taught my husband to do physical therapy on me. Dr. Weiss'a theory is that for some patients, PNE is the possible "cause" for their IC. In looking back, I believe that my pudendal neuralgia started first, then my urethra began hurting, followed by my bladder. The pudendal nerve innervates the bladder and is involved in functioning of many internal organs.
There is so much that is unknown, however, and I am only relaying my experience. I will be more confident once time has passed and I am sure of my surgical outcome.
I do know that what is right for one IC /PNE patient may not be right for another. We are all so different. Only time and research will tell.

[CharlotteY]

Ken, I did send you a personal message but thought I would write general comments here in case others are interested.

I also had a PN specialist tell me that my PN was caused by an initial infection with genital herpes. He did not specifically tell me that surgery would not help me. But, I assumed that would be case since the PN is caused by damage to the nerve from the herpes virus and not by a mechanical cause.

I have had PN for three years now and am still the same- no better, no worse. I have almost no pain as long as I do not sit and use my arms (as in typing or writing). I also have pelvic pain when I do the dishes or stand and hold anything of moderate weight with my arms outstreched. It sounds weird but it is what it is.

[CharlotteY]

Ken,

I also wanted to mention that there is a very short article in a 1985 issue of JAMA (Journal of the American Medical Association) entitled: Postherpetic Pudendal Neuralgia. The citation is JAMA 1985; 252: 2196.

I managed to get my hands on this issue to read the article. It didn't say anything very pronounced as far as treatment or anything of relevance to me. However, it does provide an inprint association between PN and genital herpes. (The article does not relate study data but is simply a anecdotal report from a gynecologist, as I recall.) Just thought I would mention that.

[Jase]

The results of my surgery show that no amount of physical therapy or other non-invasive modalities could have helped my symptoms. My pudendal nerve on the left side was entrapped by significant scar tissue, so much so that it was "stuck" to the sacrospinous ligament near my sacrum. I was told it was no wonder I was in so much pain with that severity of entrapment.



Firstly I am glad you are making such good progress after your surgery.

Also I agree with your comments about the inability of PT to rectify this problem. There are excellent pelvic pain PTs however what concerns me is that some PT will discount the diagnosis of pudendal nerve entrapment purely through manual palpation. Unless a PT has x ray vision there is no way they can discount pudendal nerve entrapment.

PT is a good approach to try but I also think PTs themselves need to recognise the limitations of their own treatment for some patients.

[Karen Napoli]

Hi, Ken,
I, too, have genital herpes. I have also been diagnosed with PN by Dr. Hibner. There is a connection between the two. First of all, the urinary spasms of creating the feel of having to urinate all the time is a cause of tightening of the muscles around the nerve (pudendal). And I believe that the scar tissue damage from the herpes disease aids in cause of PN. So, to answer your question, yeah, there is a connection. And by the way, you would really like Dr. Hibner. He is personable and extremely intelligent! Feel free to contact me here or on Facebook if you have more questions. In fact, there are many support groups on Facebook that you could benefit from joining. The people there are knowledgable because they have been through it all, both men and women. One of them is 'Pudendal Neuralgia Hope'. these are closed groups which keep them private. But, you can just request to join. In fact, I happen to be an administrator of that group.
Karen Napoli

[ICsmiles]

I wish I could delete my previous post, where I stated that in my case herpes had nothing to do with pudendal neuralgia. I would change a lot of what I wrote.

My surgery with Dr. Hibner failed... I was so hopeful those first weeks and months after surgery, even though the pain increased and I kept getting worse over time until I could not even walk. I was bedridden for almost 3 years.

As far as the herpes connection, I now believe that could be a factor in my case after all. The latest post in this thread by Karen makes a lot of sense. Thanks Karen!