Health Organization for Pudendal Education

Day two:
Finally a good nights sleep, i can never sleep well or at all sometimes after those injections for a day or two.....
My pain seem greatly improved in the last day, not sure if its because the flare up has subsided or if it really is getting better?
Please GOD be the latter!!!!!!!

So let me describe my pain and see if this fits your definition of PNE.
If i was wearing a pair if swim trunks and drew a line at the bottom of each leg all the way around my legs and a line around my waist at the top.
Everything in between those lines has hyperesthesia (ultra sensitive nerve endings) touching or rubbing the area is very uncomfortable unless its first thing in the morning where ive been lying on my side for a bunch of hours sleeping.... by the end of the day when im geting in bed just the act of removing pants causes
my skin to burn like a sunburn feels. After a few minutes sitting, even when i getup and move around often, the pain gets so bad it feels like i weigh 1000 pounds and my perineum and testicles ache and burn so bad im needing pain meds (as described in my first post) also the backs of my upper thighs.....
Sorry to bore you all but maybe someone else can confirm these symptoms and give me some resolve. The doctors have officially diagnose it as PNE but until i can get a for sure thing done that REALLY takes away the pain, even for a little bit, i need confirmation,,,,ive had this for 20 months........i have HMO ins so its almost impossible to get to the real specialists in this area
thanks
Cory
Ca

Cory, sounds like you have neuropathic burning pain in the saddle area (distribution of the pudendal nerve) but the difficulty is in determining whether the pudendal is the original source of the pain or if you are having pain there due something in the spinal area or to pelvic floor muscles going into spasm in reaction to some other problem. I wish there was some test to determine with 100% certainty where the problem originates. Sounds like none of your blocks have given you even an hour of pain relief so that doesn't help you with the diagnosis. When you had the pudendal blocks did they numb up the saddle area (showing they were placed properly?) My blocks never gave much relief either -- maybe just partial temporary relief but never complete pain relief.

It sounds like your regular MRI did not show anything abnormal in the lumbar spine area? I see you are in CA -- where Kaiser is the big HMO. I think I've heard of people getting their insurance to cover the MRN -- maybe it just has to be coded properly in order to get approved. If your insurance refuses to cover you could try for an appeal. Hermajesty on the forum is the expert at appeals. If just seems like you need more to go on before deciding on any major procedures.

Violet

Violet
Thanks for responding to my posts!

Mri showed alot of thimgs, spinal stenosis, severe left neural foraminal narrowing at left l4-5 and l5-S1 .....Facet arthropathy more left than right ....just does not show actual nerve impingments, as it cant.

My INS is Blue Shield not Kaiser ....ive already contacted Dr Fillers office...no luck there... yet....

Im actually better today than yesterday, thinking this may be my best result yet!....about a 40% improvement from two days ago.
Like you said i just need a REAL problem found so as to go about a repair!!
Lifes a beach and then you die....but not for awhile hopefully!

Thanks again
Cory
will keep yall up to date
CA

So the verdict is in and nothings changd, almost two years now.....Caudal block did nothing.......Had my followup appt and the Dr actually told me "youcan take Vicodin forever!"

Nice....Just have to wait for the burning butt syndrome to go away.....please god help me......
We have tried just about everything ive ever read on the subject....just cant find the spot of injury...
Cory

Cory, have you been evaluated by a physical therapist who is trained in treating people with PN? Some of them are very good at what they do and may be able to shed some light on your situation. Also, BCBS might be willing to pay for this if you can find someone in-network. There have to be other options than just taking vicodin forever.

Violet

Hi Cory,
I had 11 Caudal injections and found no relief although some people do. For me the ct guided block worked better. I also am fifty and sit at my job. I have a herman miller chair that allows me to lean forward putting pressure on my thighs instead of my butt. I also use the tush cush on difficult days (amazon $40). I am very careful regarding my clothing and take lyrica but only 1/3 the recommended dose (can not function on recommended dose), I also take nortryptaline and an adivan at bed time. I take pain medication off and on. Please keep us posted on your progress. I am much better than I was but still have a way to go. I am thrilled to have any relief.

Thanks for the reply Penney.
The Caudel block did not help. on to acupunture----> had one treatment, including a needle right in the perinium.....that was fun!.... not really.. I find it more difficult to explain my problem each time i try something new as no one has ever had a patient with similar issues?

Anyway the next day was a worse than usual pain day....ive looked into the special physical therapyst and (there is one on a list i found somewhere, very close to me!) ....for PNE and of course its out-of-network, that will be next after i try the acupunture a few more times or it fixe sme? .....steps i guess
Cory