Health Organization for Pudendal Education

Jim,
Seems you are moving along even negative info is good to rule out things. Glad your consult is soon, although when in pain anytime can be an eternity. I found focusing on each step made me feel progress and gave me a distraction from the pain. Your next step may be a nerve block to see if that lowers or removes the pain and if so then it is the nerve. Note that the block is diagnostic and rarely provides any long term help. Suggest guided block. Take Care
Janet

Janet, I will heed your advice on the guided block if it comes to that. Not sure what to expect on the initial consult but I am pretty sure that they will see what I have and I have all of the medical paperwork and media that came up negative on all of my other testing. Also, just curious. Being that I am only about 6 months out with this stuff, is it true that if this is caught early enough in the process does surgery have a better chance to relieve the compression?

thanks
Jim

Jim,
I am a little less knowledgable than the moderators but I believe I did see somewhere that the sooner the better and I would say 6 months is sooner than most folks I have heard on this forum. Of course sadly like everything about PN and PNE I am not sure there is offficial data to back that up? Also everyone seems to have a different experience with surgery and I think I was told success is any improvement from Dr Marvel and % improvement/success was low. I was getting the muscle spasms starting in 2007 and probably sitting pain started a year or two before that. I sat too long on a hard chair and the pain has not stopped since then in June 2010. By the time I went for surgery May 2011 I felt I was going down hill and would end up losing my job and be 24/7 pain 10 without surgery. Now at 11 months post op I am better than surgery sitting wise and working 7.5 hours vice being only able to work 5. My life though is still impacted by limited bending, lifting, etc but they say you can still improve for years. Recovery can be a long or short road with no way to know ahead of time. I was oout of work 3 months and took it slow to ramp up. Hopefully all will be faster or better overall for you as a newly diagnosed case. I wish you the very best. I am still hoping for more improvement as it usually takes a few months to see some. This weekend I am trying to take it easy to keep from overdoing and throwing out my pelvis ( they say this is because my ligament was cut and if I recall if hibner has to cut the ligament he repairs it so you would not have that issue to overcome).
Janet

Jim, that's too bad Loretta isn't on your insurance. All the more reason maybe to find a PT locally who is trained to treat PN. If Loretta can't give you the name of someone in Tucson, you could contact Stephanie Prendergast to see if she knows of anyone in Tucson who has taken her course. Her e-mail is at the bottom of this page. http://www.pelvicpainrehab.com/contact_us/

Over time, if you have a nerve compression it makes logical sense that the sooner it is relieved the better. But as Janet said, I don't know of any research studies that prove this is true. There have been patients who had PNE release surgery 15 + years after PNE started who had significant improvements.

Clonazepam might help you sleep -- especially since you have shooting pains. It's the only drug I tried that helped me get to sleep when I had shooting pain.

Best,

Violet

Volet, thanks for the information on the PT. I just emailed Stephanie to see about anybody here in Tucson.

Jim

Jim,

Loretta's visit was approx $300 but worth every penny. I really would recommend seeing her while in the area.

cari

Cari, thanks for the information. I just might pursue this option after my consult.

Jim

Update, the gabapentin and tramadol have seemed to help some. At least I am sleeping better at night. At work I am standing alot (which is really wearing me down) and trying to limit my time sitting but I do have a donut cushion that seems to help some. No more than 5 minutes though for now. I am still scheduled to see Dr. Hibner on 3 May so we will see where this all leads.

regards
Jim

Hi Jim,

Glad the meds are helping some. It can be exhausting standing all the time cause it starts to wear down other parts of your body. Good luck with your appt. in May. I will be interested to hear how it goes for you.

Violet

Vilote, the standing is what is really getting me now. I can feel my pelvic area really starting to tighten up at night when I go to sleep. And guess what the stabbing pain is back,,gotta love it..lol