Prof Roger Robert

[A's Mommy]

Raquel,

I sympathize with you and your symptoms. I have a young daughter and it is very hard to care for her. I have to have help every day. I do not have the numbness you speak of, just pain. You will find on this website a list of the many doctors worldwide who treat PNE. There aren't hundreds, but there are some. My surgeon has been Dr. Michael Hibner of Phoenix, AZ.

Unfortunately, you will find with this disease that there aren't very good statistics. Surgery should be used as a last resort. But, I would never want you to be put through years of tortuous pelvic floor physical therapy or nerve blocks. We all agree here on HOPE that there needs to be better diagnostic tools for this disease. Unfortunately, it almost seems as though we have to bug the doctors to even get anywhere. Most of us have been living medical specimens or guinea pigs. There is just not enough that is known about PNE.

Please keep us posted on what your plans are next.

Warm regards,

AthenasMommy