Health Organization for Pudendal Education

Just a random thought - wonder how common PN actually is? So many of us seem to fit in the category of having symptoms for years that might be PN related - the list is endless - erectile dysfunction, urinary urgency/frequency/stress incontinence, rectal pain not related to hemorroids or rectal pathology, undiagnosed pelvic pain, etc.

So, you see all of these ailments advertised on TV with drugs pushed at the sufferers. Wonder how many of these conditions are really sub-clinical PN? PN so mild it does not cause sitting pain?

Hey Gal,

I know that I had PN for 35 years before I started having severe symptoms and then it was another 7 years before I was diagnosed. I had a pain level of 1 or 2 for those 35 years that would flare to a level of about 4. In those days, I don't think they knew what a pudendal nerve was!

Kate

Hey Gal,

I know that I had PN for 35 years before I started having severe symptoms and then it was another 7 years before I was diagnosed. I had a pain level of 1 or 2 for those 35 years that would flare to a level of about 4. In those days, I don't think they knew what a pudendal nerve was!

Kate

Oh, I definitely think PN can vary in its severity so that many have it without the sitting pain or severe pain. I think most vulvodynia sufferers probably have pudendal neuralgia (rather than a skin condition, or a yeast problem, or urinary oxalates, or whatever else). I think the Nantes criteria describes those who have the worst symptoms of PN, not all who have some degree of PN.

Just my opinion ...
I don't think PN or PNE is rare at all. I think the doctors who recognize or treat it are rare.

Agreed Karyn!

When I talked with Hibner on Wednesday, he said he learned of PN and PNE from Googling the symptoms his patients were having back in 2005. My jaw just dropped!! He kind of laughed and said that he knew what "wasn't" wrong with some of his patients but couldn't figure out what was to help them so he went to the web like the rest of us. The rest is history!! Thank goodness he Googled!!!

I <3 Dr. Hibner!!!

yeah, Karyn, i agree with you. i was having what we can call "sub-clinical"symptoms for two years, where my pain/discomfort fluctuated between a 0 to a 3. After the initial very disturbing symptoms (where i felt like i was being pinched and pulled with a tweezer from deep inside my vagina), i had months of no symptoms. Symptoms came and went and i of course went to numerous gynecologists but got absolutely no answers. I gave up, thinking that i had candida and that i was controlling it through not eating too much white flour or sugars. Until, i flew from Israel to the U.S to visit my parents. The flight to the U.S was fine as were the three weeks that I spent here. The beginning of HELL let loose after the flight (prolonged sitting) back to Israel. Within the six month period following the flight I began experiencing PNE with all its life-demolishing, spirit-crushing intensity. During those six months I ran from doctor to doctor and from test to test... none took the time to try to figure out what my symptoms were about. I just got the "your nutts/hysterical" look and was past on to the next doctor.
It saddens me so much to think of how differently this all could have turned out if doctor's actually took the time to try to help me, as a person. But i meant absolutely nothing to them. How do we spread awareness? How do we educate? And how do I get over the anger? Anyone?? I would like to hear other people's stories as well. Sometimes it is very lonely to feel like a victim of such neglect. Truthfully, it is no less then absolutely terrifying.