Genital Herpes: A Non-Traditional Cause of Pudendal Neuralgia

[CharlotteY]

My Pudendal Nerve specialist confirmed that my PN was caused by an initial infection of Genital Herpes. My lower, unilateral pelvic pain started 5 days after my initial herpetic outbreak, on the very day that I began experiencing post-herpetic neuralgia symptoms in the crotch area such as muscle twitching, burning, and pain I can only describe as deep bone pain.

The physician told me that I am the 3rd patient he has had where he can definitively link pudendal neuralgia with a genital herpes infection.

I have never read an association between the two conditions and am sharing this information to hopefully help other people put the pieces of the puzzle together.

[dminton]

Hi Charlotte,

I have a dermatologist who went to a conference and heard a famous medical person speak on vulvodynia. This person does lots of research into genital herpes. She said that a huge number of people have it and don't even know it, because they don't have lesions (sores) ever. They discover they have it when something compromises their immune system and they finally have sores. It is confirmed with a blood test.

The interesting thing is that she said that herpes can manifest in many ways in women, such as thinking they have a UTI, or nerve pain (vulvodynia type), or even sciatica. It can feel like razor burn, or itching.

My derm wants me to take Valtrex 1 gram daily to see if my nerve pain improves. I intend to do this pretty soon. I'm just dealing with some other med changes first.

I'm one of those who knows I have herpes, but seldom have outbreaks. Apparently, and this is very scary, the herpes virus can "shed" constantly, even when you are not having an outbreak. This means not only is your body being assaulted with the virus because it isn't just sitting quietly in your nervous system, but you are contagious.

Isn't that interesting?

[leelee88]

I wonder if this also applies to type 2 herpes Virus? Just wondering because I have V and so much nerve pain down there and was Dx with Herpes type 2..You know the ones where you have the out breaks on your lips and mouth..I wonder how many others have type 2 virus but has never had it confirmed and who also has issues with V..

My GYN said that almost all people who get fever blisters carries the herpes type 2 virus..

[dminton]

I think a blood test will tell you which type you have. I just didn't realize that herpes can manifest in so many ways in women, and often times these women don't even know they have it.

The speaker was "Nurse Barb" who practices in the Bay Area and has a TV show.

[CharlotteY]

Hi Rhonda,
From what I understand, Genital Herpes is usually caused by Herpes Simplex Virus 2 and mouth, lip sores are traditionally linked to HSV 1. I have read, however, that in recent times people with mouth sores are more and more likely to carry Type 2 rather than type 1.

DMinton,
I can speak first hand as to being contagious even though one does not have active signs of a Herpes breakout. My spouse told me straight-up before we were married that he occasionally had a breakout. I loved him so much that I considered that a very small issue in our relationship. I did not contract the virus until after we had been married for over 15 years. He was on a short-term course of steroids for an asthma attack, which we later figured out compromised his immune system allowing him to transmit the virus to me. He did not have any signs of active infection at the time, yet the virus was clearly "alive and kicking."

My husband is devastated thinking that my life has been changed forever so drastically. Not only do I now carry the Herpes Type 2 virus but I have chronic pudendal neuralgia as a result, which affects every aspect of my life. I have forgiven him, of course, and we are working through this together.

It's wonderful to have an anonymous group (you all) with whom I can share (honestly) what's really going on with me. It's not like I can announce to my family and friends that the reason I am now somewhat disabled is because my husband gave me Herpes. That would really be a conversation starter at Thanksgiving dinner, don't you think?

[dminton]

Charlotte,

Your situation is a perfect example of the types of scenarios that Nurse Barb was relating at her dinner program that I attended. I'm so sorry to hear this. Might I ask what your symptoms are, and how you treat them, if at all?

I have burning and shooting pain all over the vulva, cannot wear pants unless they are stretchy or very loose, cannot have sexual activity. My bladder pain before taking Cymbalta was burning and frequency and slow stream, plus a sort of electric jolt when I move a certain way or lean against the kitchen counter too suddenly, for example. It then feels like my bladder contracts at this time.

Unfortunately, it looks like I can't take Cymbalta after all. It's the only thing I've taken that's wiped out both vulvar and bladder symptoms. I don't know what I'm going to do.

[CharlotteY]

DMinton:

My only symptom of pudendal neuralgia (caused by the Herpes virus) is pain the lower, left pelvic area, where my ovary is. I generally only have pain when I sit. When the pain gets bad it makes me feel like I have to pee really, really badly.

My doctor started me on Lyrica, but I stopped it due to horrible side-effects. I am also going to a PT who specializes in pelvic disorders. If this doesn't work, he's going to try injections into the pudendal nerve.

[Kara29]

Thank You for sharing how your PN came about. PN/PNE Specialists are trained to rule out other conditions that may be causing similar symptoms. It's great that you have a Speciaist that has narrowed down what caused your symptoms and how they relate to the Pudendal Nerve.

The more we know, the better informed we can become to help our selves and our Doctors figure out how to treat the problem. Each indiviudal on the ICN is different as to what caused their symptoms and we often differ widely. Some of these symptoms are overlapping, which is why it takes Doctors so much time to fiigure out how to treat us. Most cases of PNE are not classic ones. That's what makes most cases so devilishly difficult for the average doctor to associate with a single condition like PNE, and for even an expert to diagnose without serious testing. Even the PNE surgeon is not sure until they go inside that it's PNE. And some of us have a wide variety of conditions with the same symptoms. Plus the female anatomy is very difficult to navigate which is anothe reason why is can take Doctors so much time to get what is going on. The anatomy of the Pudendal Nerve can be seen here:http://www.pudendal.com/ It just goes to show us how complicated the Pudenal Nerve Is and how many areas it can affect and be related to.

Sometimes we never find a cause but just have symptoms that take over our lives and we have to try our best to find a specialist that is enthusiastic in helping us reduce our pain and try to get a better handle on it so we can do more things in life and or try to get back on the track we were headed toward.

I'm glad you found a Specialist. It would be nice if at some point you would feel comfortable in sharing who you are seeing so that maybe those of us that may actually have your symptoms can be helped as well.

I always give out the name of my Specialist, Dr. Mark Conway because, I too want to hopefully help other people put the pieces of the puzzle together.

I came around the hard way, 10 years of medications, operations, and diagnosis. Now I am at PNE's Door so I know what it feels like to have it take so long to find out what could have been wrong all along.

Any condition that causes nerve problems can be related to PN/PNE. We are all learning more and more each day and each patient can serve as an educator to their Doctors and the other way around.

Again, Thank You for sharing your experience. I'm sure it will help some of us in sorting things out with our Doctors.

Kara



My Pudendal Nerve specialist confirmed that my PN was caused by an initial infection of Genital Herpes. My lower, unilateral pelvic pain started 5 days after my initial herpetic outbreak, on the very day that I began experiencing post-herpetic neuralgia symptoms in the crotch area such as muscle twitching, burning, and pain I can only describe as deep bone pain.

The physician told me that I am the 3rd patient he has had where he can definitively link pudendal neuralgia with a genital herpes infection.

I have never read an association between the two conditions and am sharing this information to hopefully help other people put the pieces of the puzzle together.

[CharlotteY]

Thank you for your kind words, Kara.

I also wanted to mention that I only recently found a medical journal article linking Genital Herpes with pudendal neuralgia. It's pretty old, as far as medical research is concerned (from 1985) and published in the Journal of the American Medical Association. I'm trying to get my hands on a copy. Here is the information:

Postherpetic Pudendal Neuralgia JAMA 1985: 253: 2196

[Kara29]

What matters most is that your specialist is helping you figure out what happened in your case and is trying to reduce your symptoms. Let's hope that the specialists in PN/PNE know about this connection and can work with how to treat it with it's correlation with PN/PNE.

Kara

[ICsmiles]

Hi Charlotte,
wow. when i saw your post I had a flashback to 13 years ago when this all started. My OB/Gyn did not have any idea what was wrong with me, but we thought it might be related to herpes. I was on the antivirals for months but it did not help. Then he sent me to a pain clinic and the doctor suggested herpectic neuralgia. I hated that diagnosis because they said there was nothing they could do - they could not find anything. The symptoms back then were pain and an itchy feeling on the left side of my vulva, or pudendal area - it started small and ended up feeling like a knife stuck in me, or multiple knives and a sword too with shards of glass for good measure. Eventually I discovered it was also my urethra that was hurting and after a couple of years my bladder was aching and burning and I was diagnosed with IC. But what came first? the IC or the pudendal neuralgia? And did ther herpes virus have anything to do with it? I have had herpes for decades, but it is mostly quiet - but any outbreaks I have had are in the general area where the neuralgia started, so i wonder..
I am just started down the road of pudendal neuralgia diagnosis and treatment. I am having a nerve conduction test April 1 and then will go from there. It has been a debilitating condition, especially the last two years, since my life has narrowed down....
thanks for posting this....



My Pudendal Nerve specialist confirmed that my PN was caused by an initial infection of Genital Herpes. My lower, unilateral pelvic pain started 5 days after my initial herpetic outbreak, on the very day that I began experiencing post-herpetic neuralgia symptoms in the crotch area such as muscle twitching, burning, and pain I can only describe as deep bone pain.

The physician told me that I am the 3rd patient he has had where he can definitively link pudendal neuralgia with a genital herpes infection.

I have never read an association between the two conditions and am sharing this information to hopefully help other people put the pieces of the puzzle together.

[purpleviolet]

I had IC way before I contracted herpes from someone. Herpes just adds insult to injury and I think increases the sensitivity of the nerves. There is a lot of scam stuff on the internet about herpes these days so be careful. Herpes gets into your DNA so it just can't be eliminated. The stress from IC makes me more prone to outbreaks. My herbal teacher once told the class the he uses a chinese herb called platycodon to control herpes but an an herbal pharmacist in a Chinese herbal store told me that that herb is not taken by itself but in formulas so I don't take it and haven't pursed that route, even though I have some of the dried root sitting in a drawer. I'm too consumed by IC to pursue it. I don't like taking anything every day.

[ICsmiles]

Thanks purpleviolet. It was good just to get a message today. I am having a bad day, bladder flaring and knives in the perineum feeling. so discouraged. It is nice to come to the ICN because I don't feel so alone with this.
Heres to a day when none of us have to suffer any longer.

[Briza]

This is very interesting thread and I hope others will continue posting in it.

I was Rxd herpes med Valtrex when I was first beginning treatment for VV and Vulvodynia. It and other herpes meds like acyclovir are sometimes prescribed for nerve-related pain/disorders like VV and Vulvodynia. I did not have success with it AT THE TIME, but at the time I was in huge year long+ VV flare, so really very little helped me at that time. Once my symptoms calmed down I found lifestyle changes and topical treatments and oral IC treatments and diet and just with plain ole time greatly reduced my symptoms to manageable and sometimes remission level (when lucky;))

Anyway, now that my symptoms of IC, VV, Vulovodynia are more under control I am thinking about revisiting treatment with Valtrex or something similar to see if that can keep my symptoms even MORE under control. Figure it won't hurt and may help:) I say it won't hurt because my IC and bladder symptoms do not seem to be med sensitive.

[blondee43]

Bri
Im curious to what kind of life style changes you made to help yourself. I keep hearing people say you need to make life style changes and im not sure what they are talking about.
Thanks
Tonya

[Briza]

Bri
Im curious to what kind of life style changes you made to help yourself. I keep hearing people say you need to make life style changes and im not sure what they are talking about.
Thanks
Tonya


Diet
Drinking lots of water
Keeping physical and mental stress to a minimum (required taking medical leave from work for a long time and then finding employment in a different field than I have been working in past 10 yrs...for those of you following my job search I got a call today that sounds VERY VERY promising:smile tee...more info to come after tomorrow....please pray for me:pray::pray:...I need and very much want this job..it is in my field of work but very low stress, no homework!! and very interesting job for me!!!)
Greatly reducing intake of alcoholic beverages and reducing (and TRYING to stop) smoking....for those who are struggling with this as I am I have found that at least REDUCING the amount I smoke does have a great impact on reducing my symptoms...please, no one please do not chastise me for smoking because I AM well-educated on its health risks and its impact on IC symptoms....it is an addiction that is very hard to stop, but for those who do smoke, please know that ANY reduction in your smoking habits can greatly reduce your IC symptoms, as it has for me, and also decreases any and all of the other associated health risks...I try and I have tried and I will continue to try to stop...it weighs on my mind constantly...but as with anyone with an addiction to anything, negative support does not help....:)
FInding less intense exercise that does not cause me pain (has been hard because even just 30 min brisk walks can cause me pain...have found that recumbant bike at gym causes me the fewest problems but I find it very boring, walking boring for me, too...lol....but swimming, treading water, body boarding, and roller blading I have found are good subs for me and give me a bit more intense workout without too much or no pain and are not as boring (for me) as walking or using recumbant bike)
Also following my with trial and error developed sex with little to no pain regimen...I have both IC and VV, and VV used to put me into two to three week very painful, disabling flares...no more:))

Those are lifestyle changes that for me have been the most important:)

[Mrs. Peel]

My herpes had been dormant for a few years, and all my outbreaks after the first few were very minor.

Now I'm having a major (bleeding) IC flare that has lasted a week. I'm going to the GP today for a urine culture.

I also noticed some pain when wiping and took a look in the mirror. Massive herpes outbreak.

One has to wonder whether they are connected.

[purpleviolet]

I get THAT too - sometimes further back at BM site or further up on labia. Be sure you figure out exactly where blood is coming from. Lesions can bleed, too so maybe not IC? Know for sure the nerves are all sensitized. I take valtrex and use prescription cream also. I only use these during an outbreak and it takes about 2 and half days to feel better. I wonder if I should use the pills preventatively, but I don't, even though outbreaks are frequent. If I had one wish to choose which went away permently for sure I would ban the IC if I had a magic wand.

[Tuckersmom]

I'd ban the Herpes. At least IC is not transmittable.

I've had HSV2 for 32 years, and IC for 22 years.