Health Organization for Pudendal Education

As a nurse, I have been asking every doctor I work with if they have experienced PN in their careers. Only 2/10 had even heard of it. Even my experienced OB had not. All the stars have certainly aligned for us to be unfortunate enough to be afflicted.

Love to all
cari

Hi Cari,

Hugs to you from another nurse. I have no clue how you get through 12 hour shifts with PN -- you are pretty amazing!

I had to go through a few docs before I finally found one who knew about PN and it was actually a PT who first diagnosed me. We just have to keep trying to get the word out, eh?

Violet

sunil wrote:I have written topics in here about hope and facing the truth but what else can we do? This is life and how people are, we can not change them but we can change ourselves and that's where hope starts.

Sunil - out of all of the posts you've written, this was the very best one. Thank you so much for sharing your logical and inspiring thoughts with us!

Hi Cari,
When I first began to research my symptoms, PN(E) was labeled as "a rare condition". Since finding this forum and communicating with other Hero's all over the world, I've come to the conclusion that we are not a rare breed. It's the doctors who are aware of our condition and treat it that are rare.
Warmest of regards,
Karyn

Karyn wrote: I've come to the conclusion that we are not a rare breed. It's the doctors who are aware of our condition and treat it that are rare.

So true Karyn, I don't want every doctor to be an expert, just to be aware would be enough, then they could refer to the experts. One day

Yes I agree with you, we are a rare breed and seem to be some of the unfortunate few who have this horrible condition, but on the other hand we are still lucky that we live in these times with this condition. Even though this condition is often misdiagnosed, and we still do not have effective drugs to deal with this type of pain; we still are better off then people in the old days. I'm reading this book and this gal loves riding her horse and I think omg what did people do such as cowboys if they got pn? Or maybe people didn't get this condition then. Maybe bodies were tougher than because they were less sedentary compared with people now. Who knows, just some of my thoughts.