Health Organization for Pudendal Education

Add me to the list that has this. Dr hibner thinks I have dorsal and perineal branch issues.

Merrie

You can still have pn and have botox help your pain. The botox will reduce spasm of the muscles and help manage the viscous cycle of spasm/more nerve pain/ more spasm / more nerve pain. When I get botox I still have bad nerve pain (like 6 level pain) but my pain is much much worse when the botox wea...

Nyt - if you are on Facebook there is a group called rsd angels. Maybe see if someone on that group can recommend a dr to you. Just a thought. Hang in there!!

Merrie

I have had weight gain issues with lyrica. My approach has been to stay away from carbs and eat lots of fruits and veggies. I have not lost the weight I gained but I stopped gaining as much when I cut out processed foods and carbs.

Merrie

Don-

How did you get health net to pay for the MRI? I am having a problem with that right now.

Thx!
Merrie

Im curious to get the opinion of others on this. I have been getting botoxed every 4-6 months in several muscles in my pelvis (piriformis, obtruator, coccygeus, levator, peri-vaginal muscles, psoas). Been doing this for 2.5 years. If my muscles are botoxed - would the dr potter MRI not really show a...

I am so sorry for your experience. It sounds horrible. How experienced was the dr who gave you the botox injections with doing them in the pelvic floor muscles? I think dr experience cannot be overrated with this. For me botox helps me tremendously although as soon as it wears off after 4-5 mos my f...

Donstore- Can you explain more about the hip resurfacing procedure? Did you have this done before or after you had pne? I have a major issue with my hip having no joint space and arthritis. My orthopedist about a year ago recommended a total hip replacement which scared me to death - I am 41 and he ...

I have CRPS symptoms as well as pne. The sympathetic blocks ( I have had lumbar, pelvic and splachnic) help more with the CRPS symptoms than the PNE itself. The PN blocks did not works for me (first one short lived relief, second one huge several month flare) and the various S2-S4 blocks I had worke...

I have had a number of sympathetic blocks - I get them about every 6-8 weeks. They absolutely help control the pain on a short term basis but have not helped long term. My dr is going to try a different med in the block next time (marcaine instead of lidocaine) to see if I get any longer term benefi...