I fear that I may have PN.....desperate for some help

[HerMajesty]

Excellent post Violet; and very interesting about the palpation. I saw Dr. Weiss in San Fran for one visit and he is a true expert with the palpation...he palpated my pudendal nerve transvaginally without eliciting any pain at all. So at that point he did not know what to do with me and sent me away with some useless compounded cream. But he never mentioned / may not have known that this was an indicator I had PN but not PNE - which is what turned out to be the case.

[Violet M]

HM, when Dr. Bautrant did a pelvic exam he said "this is where it hurts, right?" and pressed right on my worse area of pain -- on the pudendal nerve at the ischial spine. I really think this is extremely important in the diagnosis of PNE but maybe just because that was my own experience.

Violet

[Karyn]

HM, when Dr. Bautrant did a pelvic exam he said "this is where it hurts, right?" and pressed right on my worse area of pain -- on the pudendal nerve at the ischial spine. I really think this is extremely important in the diagnosis of PNE but maybe just because that was my own experience.

I agree. I had the same experience with Dr. Conway. He knew exactly where to palpitate to elicit a very specific pain response. My GYN and Uro/Gyn were only able to identify a tight PF, which in my case, was the result of dysfunctional nerves.

[lucky]

So as it turns out, my insurance doesn't cover the particular physical therapist that I need. I've search throughout many of the forums looking for some tips on stretching and what not, but aside from some general stuff, there isn't anything I'd hope to learn from a physical therapist.

The physical therapists in South Florida charge a ridiculous amount for just one visit ($195), and it looks like I'm going to have to figure this out myself. Any links or any tips you guys may have from past physical therapy sessions that may be helpful?



Thanks!

[stephanies]

I would suggest calling the office of the physical therapist you want to see and explain your situation. His or her office can probably recommend other pelvic floor PTs in the area and one of them might be covered by your insurance.

Stephanies

[lucky]

Quick question:



How long did you all do PT before seeing any results? And if no results were seen, how long did it take for you to decide of having surgery?

[janetm2]

Hi Lucky,
I honestly did not try all the treatments but went the old route of trusting the medical people I saw. So maybe quicker to surgery than most. For me I started PT in Oct 2010 and by Jan 2011 PT said they could not help me my ligaments were too tight and I may have PNE. They sent me to Dr Marvel who evaluated, reviewed history and did nerve blocks himself the sent me for guided nerve block that completely removed my pain for a few hours. Sent me for MRN to rule out other things and said my poor quality if life with all the rest made me a candidate for surgery. I had left TG in May 2011 and he validated his eval of PNE in surgery. I am doing better that pre surgery but struggling with SIJD that started post surgery. I went forward with surgery because I felt I was rapidly going downhill, would lose my job and end up 24/7 at pain level 10 and had not been on this site to know any different. Good luck and hope PT can help you.
Janet

[HerMajesty]

I started seeing some PT results within a couple weeks. If it will help you, it won't take long. I had a lot of bladder issues at the time and aside from the initial evaluation, my bladder felt much better after every single session I attended.
I never decided to have PN surgery and never would have until I had a preponderance of evidence that the pudendal nerve was entrapped (it wasn't). I elected to have tarlov cyst surgery as soon as I collected a preponderance of evidence that tarlov cysts were the cause of my problem. It took about a year to figure it out leaving no stone unturned, and another year to do all the preliminaries for surgery: consults, choosing a surgeon, tests, long and horrible insurance battle. The most important part was that I was adamant to identify the underlying pathology causing my symptoms. You can't know if PNE surgery is right for you based on symptoms and a hunch. Chase the underlying pathology in light of your history and diagnostic testing.

[Positivepoppy]

Hi Janet
Interested to read your post and experiences· I also had bilateral nerve decompression surgery after a series of nerve blocks and a high quality ultra sound. Was told my diagnosis was conclusive and pudendal nerves were entrapped both right and left side. The ultra sound showed that bilateraly both arteries were sluggish that suggested nerves were entrapped, also huge display of electrical activity screen kept flashing red. I felt surgery was the only option as pain was so crippling and getting worse. Did my research on the specialist I saw and knew that surgery was not an option he advocated indiscriminately. I am 10 weeks post surgery and a definite improvement in pain, still there but less raw and angry. The surgery demonstrated that left nerve was tettered to left ligament and right side entrapped in scar tissue, have no reason to distrust findings. Still early days and not driving yet or back in work but able to go for a daily walk and a gentle swim several times a week that is bliss, only time I am pain free.
I feel surgery was right for me and have seen an improvement. I do appreciate it is a big decision to make and certAinly not right for everyone. I am feeling positive even though currently having a flare up at the moment as I'm talking about the condition. Nerves always jingle and jangle when I'm discussing condition, strange but true!
Good luck to everyone suffering from this hideous condition. I personify PNE And imagine competing against it in a game of tennis that sadly I can no longer play!! Some days PNE can win a game/set but other days I'm in control and winning the tournament is in my grasp!!!

[janetm2]

Positivepoppy,
wishing you the best and keep ahead in the tennis match! My nerve juat went super pain 20 minutes ago and no idea why? But I am still doing better than without the surgery and keeping up my fight to get to retirement. The dancing days were gone alone with the foot issues but with the pelvic instability the twist is truly no longer an option. Can not even tap my foot so now use my hands to the beat. Take Care and glad the surgery helped that is the very best news around here.
Janet