Any PNE specialists in AL, FL, GA or La?

[JeanieC]

Unless you are already a patient you will be unlikely to hear from a doctor by email. At least this has been my experience. It sounds to me like Dr Chad Austin or Dr Vance would be the most likely to help you. What does Ruth Jenkins have to say about your pain? A PT was the first one to suggest to me that my symptoms were from pudendal nerve and this was just from me describing my symptoms on the phone. Connie was not able to help me though and she does work mainly with older women with bladder issues. I have actually been to several PTs and massage therapists and tried everything you can think of without help.
Ablation, neurostimulation, and pain pump are what I have left, and I plan to try them all if I have to.

[gwynnsh]

Yes, most doctors won't email you back with the exception of a few. I've heard conflicting reviews about the MRN & Dr. Filler so I don't really know if I'm going to have it done or not. I'd hate to drive to B'ham & waste a full day from work just to have the scan be misinterpreted. Dr. Filler is actually supposed to read the scan & then relay the info to my doctor but I'd rather see him. However, I just can't afford to fly to Santa Monica & take 2 weeks off to have all kinds of procedures performed. I've been through too much as it is, plus I don't even know if it's really PNE or not. I'm leaning toward that diagnosis but maybe it's IC, I just don't know what to do anymore. I used to have a solid plan but as time goes on, the less & less I trust doctors & the more frustrated I get. They really don't know very much outside of what they learned in medical school anyway. My PT said that I probably have some sort of pudendal neuralgia but since the past 5 or 6 treatments haven't really helped, she's not really sure. I still can't decide if I want to see Dr. Harris in Gulf Breeze, Austin in B'ham or Vance in MS. Pulsed radio Frequency isn't listed on the Gulf Breeze website & that's kind of what I'm leaning toward. I know that I do not want continuous radio frequency (CRF) as that could really mess you up more. I'm also thinking of seeing another urologist to test for IC in Mobile (Dr. Fleck is supposed to be good) but I really don't believe that's what I have. I just don't know. I do know that it's pretty sad when you have to diagnose your own problem & it completely consumes your damn life. I'd like to get the MRN so maybe I could at least verify some type of nerve damage/entrapment & maybe go from there. I'd probably look into the PRF if I were you since it's not as invasive but that's obviously up to you. Have you ever had IC ruled out?

[JeanieC]

I do have IC but it is a mild problem for me compared to PN. I have had bladder symptoms off and on my whole adult life but this is nothing like the disabling pain I am in with PN. IC does not cause problems with sitting, not as far as I know. I think going to Dr Fleck is a good idea for you. She is the one I would go to also if I thought a urologist could help me.

Have you read the symptoms of the Nantes criteria on this site? You symptoms should be pretty much like this if you have PN. They do not have to be exactly the same though, as some of us have pain sitting and standing. The pain should be burning, sharp or like a knife. Many of us have a sensation of a foreign body inside us. Mine began with the sensation of having a lump on the left side of my rectum. Can you sit at work? You can drive to Crestview, which I could not do unless my life depended on it. I must say I am hoping that you do not have PN, although it does seem like PN and IC may be part of the same syndrome.

Let me know what you decide to do.

[gwynnsh]

I think my symptoms are due mainly to nerve irritation from the bladder neck incision. I just took a 2 week course of Bactrim DS because almost all of my symptoms mimic an infection. It did help the pain & OAB symptoms a little (around 35%) but something is still not right. I'm not sure if it was the anti-inflammatory effects or not but it certainly gave me a small amount of relief. I've got an appt. with a urologist in Pensacola to see about getting PTNS (Precutaneous Tibial Nerve Stimulation) using an Urgent PC unit. It's a minimally invasive procedure that uses electrical stimulation directly to the tibia at the ankle which innervates the pudendal nerve. Supposed to use it for 30 minutes per treatment each week & it can take 6-8 weeks to see full benefits. Looks promising though. If it doesn't work I'll probably go see Dr. Vance to see about getting a pudendal nerve block and/or PRF ablation. I'll let you know how it goes.

[JeanieC]

That does sound interesting. I am wondering how it is going, although I realize you are still in the middle of treatment. I do hope it works for you!

[Stephanie P]

I have bladder symptoms, for which a urologist advised trying percutaneous post tibial nerve stimulation. However, a district nurse who researched this on my behalf was told by a manufacturer of the equipment that it is contraindicated for PNE.

[hopeman]

JeanieC

Did Dr Ansell cut your SSL and repaied it.

Did you develop pelvic instability after cutting SSL

Hopeman