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View Full Version : Non-Traditional Symptom of Pudendal Neuralgia


CharlotteY
10-03-2008, 04:47 PM
After being misdiagnosed with IC for a year, I was recently correctly diagnosed with Pudendal Neuralgia. From the beginning I suspected PN but was thrown off following this path since my main symptom is lower, one-sided pelvic pain when sitting. (The pain is right where my left ovary is.) I do not have any pain in the traditional places involving the perineum, rectum, clitoral or other area- only in the left, lower pelvic area in one spot. I have never read anything that is consistent with pain in that place and PN. My pudendal nerve physician (one of the few US specialists) has told me that he has had other PN patients whose only complaint of pain has also been in the lower pelvic area when sitting.

I just wanted to point that out because had I known this a year ago it would have saved me a year of useless treatment for IC.

The physician also told me that my pudendal neuralgia was caused by an initial genital herpes infection. I always suspected that my pelvic pain was related to the Herpes infection but had never read anything that link the two. In fact, I had 2 urologists and my family doctor tell me that they too have never heard of an association between the two. My pelvic pain (pudendal neuralgia) started on the VERY DAY that I started having post-herpetic neuralgia type symptoms, about 5 days after my initial out-break. The PN doctor told me that I am the 3rd patient he has had where he can link a genital herpes infection as the cause of pudendal neuralgia.

Again, I am sharing this information in the hopes that it helps others find a correct diagnosis of PN to explain their non-traditional PN symptoms. To sum it up: you can have pudendal neuralgia caused by a genital herpes infection that can manifest itself with lower, unilateral pelvic pain felt only when sitting down.

Kara29
10-05-2008, 05:32 PM
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