Best Dr for PGAD in USA - Please

[helpmeplease2013]

Hello,

I am desperate for help. Have had PGAD for 5 years with no relief. Looking for a Doctor that can help with PGAD in the US, or anywhere else I guess. I would greatly appreciate any information.

Thank you so much,

Jenny

[Violet M]

Jenny,

It really depends on what types of treatment you are interested in pursuing. Are you first looking for a diagnosis on what is causing the PGAD or do you already have a diagnosis that it is pudendal neuralgia related? I'm not sure what diagnostic procedures you have tried yet. Things like tarlov cysts need to be ruled out because they may be one of the causes of PGAD. If you have tarlov cysts then you would want to talk to Hermajesty about who she went to.

Dr. Echenberg in Pennsylvania has a lot of experience treating PGAD conservatively but to my knowledge he does not do pudendal nerve decompression surgery. You can read more about his approach at his website:
http://www.instituteforwomeninpain.com/ ... -echenberg I'm not sure where you live but you might be able to get some of these treatments locally, especially pelvic floor PT but be sure it is someone who is specifically trained in treating PN.

If you are thinking of pursuing a surgical route you would probably need to try some nerve blocks first and you might be able to get at least some of them locally. In the meantime you could make an appointment with one of the surgeons because the wait can be long. It's impossible to say who is the best. You can read people's experiences in the case update and surgery section of the forum and then decide which approach you feel is best for you.

Carolynm got pulsed radio frequency ablation in Colorado. http://www.pudendalhope.info/forum/view ... =36&t=3280 I didn't read through the entire thread just now and I don't remember if it helped her PGAD but you could send her a PM and ask.

Take care,

Violet

[helpmeplease2013]

Thank you very much for your reply Violet.
I have an MRI at the beginning of July, so I haven't been diagnosed with PN yet. I am going to a PT but no change so far.
I am really struggling and can't go on much longer, thus why I am willing to go anywhere. I have lost everything -job, etc, and now I truly feel like I am about to lose my mind. I cannot take this any longer. No one had been able to help me in Canada. I don't know what to do...

[michellem]

Hi helpmeplease2013, I feel ur desperation and know exactly how you feel. Not knowing exactly what it is and the constant pain and agony that you can't get away from. I'm so sorry. I've had pne and pn for a lil over 6 yrs and it takes a toll and makes you feel like your going crazy. It took me a lil over a year before I found dr Hibner to give me a diagnosis. I had good experiences with dr Hibner. He's in Phoenix, AZ. They will make you do CT guided injections and mris before discusing surgery, if thats what u choose to do. Please let me know if I can help!!

Michelle

[Violet M]

Help Me,

You might be interested in reading the most recent newsletter which you can access from the homepage. Near the end of the newsletter, I have summarized a list of things that women have posted that helped them cope with PGAD. You may already be trying some of these but hopefully it will give you some ideas.

Diagnosing a pelvic condition like PGAD is like putting a bunch of pieces of the puzzle together until you finally get a picture of what your diagnosis is and the MRI will only be one piece of that puzzle. There are Canadians who have had their treatment in the US paid for but if you do end up having to pay for it yourself, my guess is that treatment would be less expensive in Europe -- although the travel expenses might be greater.

Take care,

Violet