Health Organization for Pudendal Education

Hello,

I was diagnosed with PNE in September 2011. I have had a series of 3 PNI injections each series about 5 weeks apart. I went for my last set of injections to find that the injections weren't helping my left side at all. I am currently taking, Vicodin, Lyrica, Amitriptyline and I am on a fentanyl pain patch. There are days that it even hurts to walk! I recently was able to start standing more at my job which helped alot. My question for everyone out there...is how do we know that this is really what is wrong with us? This is a very scary thing for me, I am only 33 years old and have small children. I did have a hysterectomy Oct of 2010 and ended up needed emergency surgery on New Year's of last year....The pain I am having is coming from an incision that was down because I was told that I had an abcess in my bartholin gland, but that wasn't the case at all....so I ended up another surgery to fix that situation and that is where all my pain is! It is so bad I can hardly walk some days...Any comments or suggestions are greatly appreciated! I do have a wonderful PNE Specialist that trained over in France and sounds very educated! Please Help!!

Welcome Princess.

Princesspokie wrote: My question for everyone out there...is how do we know that this is really what is wrong with us?

You have asked a great question but there really isn't an easy answer to it. The best way I can answer is suggest you read the diagnosis and symptoms pages on the website. http://pudendalhope.org/node/9 and http://pudendalhope.org/node/10

I'm not sure who your physician is but not all of the PNE surgeons do a really thorough pelvic exam like you might get from one of the PNE physical therapists so in addition to seeing the surgeon you may also want to consider having an evaluation from a really good physical therapist. If you are not sure of a correct diagnosis, you might consider having an MRI that uses Dr. Hollis Potter's protocol and seeing more than one physician before making any major decisions.

Violet M

Princess

I am a PNE Gal who developed this condition following a hysterectomy....mine was in 2003 so a long time ago. Having followed many protocols in Europe I cna only speak of European doctors. Where are you situated and which doctors have you seen so far?

Hang in there...we are here to help you

Amanda,

I am a patient of Dr. Stanley Antolak's. He is very knowledgible when it comes to any questions I have. I do believe this started from my hysterectomy procedure that I had. I was diagnosed by a pelvic floor specialist who is also very firmilar with this condition also. It sure is a long road that is for sure. As for the special MRI, I have had an MRI done but I am not sure of the procedure was done with the Hollis Potter's Protocol...what is that specifically? I am on the fence with surgery but I certainly don't want to live this way for the rest of my life.