Seeking your valuble insight

[make-it-stop]

I know what you mean about it being preferable to address the root cause, but as someone who suffered for a couple years before giving in and taking pain medicine, I can say I wish I had started the medicine from Day, and it has improved the quality of my life a lot. I may not be completely better, but some days I almost feel like a normal person. I bet you'll get some relief from Dr. Goldstein. Lots of luck! I may write you in a month or two to see how you like the PT in Eugene. My family lives there, so I'll probably be in the area once in a while.

[Violet M]

I read the article by Dr. Goldstein. It's a good article but I just wanted to say that before I had PNE surgery I could not use a TENS unit as he suggested. It basically sent me through the roof. So proceed with caution on the TENS unit. I am one of the lucky people who is essentially cured of PGAD. You may want to check out my article in the HOPE newsletter. http://www.pudendalhope.info/sites/defa ... ne2013.pdf Not everyone has PGAD due to PN or PNE but if you do, you might find this article very helpful.

Violet

[miniwheat]

Violet,

I have read your article, and to find it helpful. I am not sure what to expect from Dr. Goldstein -- I know that he is very experienced in treating this condition, and he seemed very confident that he can help me, but I am just hoping that he and I see eye-to-eye about my goals for treatment. My biggest fear is that he will pescribe what others doctors have in the past -- Medication and PT. I know that PT will be essential, and medication is likely in my future, too, but I am certain that there is a deeper root of my issue, and I feel strongly that surgery will be in my future. I want correction, not suppression. I am very afraid of being improperly evaluated, since I have been so many times in the past. Hoping for the best, but preparing for the worst.

[Violet M]

Well, it's good to proceed with caution. Surgery does not always help everyone and once it's done it can't be undone. So make sure you have the right diagnosis and only consider surgery as a last resort.

Violet

[stephanies]

Miniwheat,

I know just how you feel -- wanting to understand the reason for the pain and discomfort and hoping there is an action that can remedy it. Sometimes, however, a fixable cause is not identifiable and sometimes it is, but it just takes time to put all the pieces together to figure it out. In the meantime, you are seeing specialists and gathering information and that can be very useful. You mention getting an MRI done and that is a great place to start. Hopefully, it will help you rule out some obvious causes of your problem. Unfortunately, MRIs are tricky when it comes to the PN because the nerve is so small and cannot be visualized by the machines. Many doctors (including Dr. Conway) caution patients against putting much faith in an MRI for a PN diagnosis and prefer to use symptoms, a thorough pelvic exam, and a PT evaluation instead. I found Dr. Conway to be a kind and personable doctor who really tries to help his patients. I also spoke with Stephanie P. and had
PT with Liz from PHRC and they are both very knowledgeable and really want to help. One more question -- you mention tingling in your spine, have you had a lumbar spine MRI? Good luck to you.

Stephanies