Health Organization for Pudendal Education

Don, I'm sorry to hear about this development. Hopefully you're just recovering from the fall. Does the pain feel nervy? For me the pain is definitely nervy, and I can feel the pain signals travelling up the spinal cord and right into the brain. It's an anxiety-provoking, breathtaking kind of pain. Thankfully, however, like you it goes away after resting.

donstore wrote: I was thinking about seeking PT for the sacral pain but after hearing about Faith's experience, I am apprehensive about making it all worse. No easy answers, that's for sure.

Don,
So sorry to hear about your new pain. How did you land when you fell? Did you lad on your sacrum or coccyx area? I do think my experience with PT is unique and shouldn't be an issue with you. My increase in pain from SI manipulations was because of the high velocity technique used and also the fact that I was 6 months postpartum and still breastfeeding. Have you had an xray? I know it won't show much, but just to make sure. Like you, my sacral pain hurts when lying flat on my back. I only lie on my side. Like Lernica said my pain feels like nerve pain. Burning and almost electrical like. It really travels all around my pelvis and up my sacrum. Take an antiinflammatory (i.e. ibuprofen) if you aren't already and can. I do hope it gets better with time and is just related to the fall.

I wear lidoderm patches over my sacrum and it helps take the edge off the sacral burning pain. Might be worth a try since they are very easy to use.

Merrie

I wish I could use Lidoderm patches Merrie, but they are like a $100 a patch for me Name brand and non-preferred drug on our insurance.

Hi Faith and Lernica,
Thanks for your reply. When I fell, it was on my right knee and I rolled forward on my right hip and back to a standing position almost like an acrobat so there was no direct impact on the sacrum which makes me think that it is referred pain from the PN. Also, it has the same burning quality as the perineal pain. I was a little concerned because I had my right hip replaced in last March but it is rock solid now. If only the PN were as easy to fix as that. Maybe I can get my insurance to pay for the patches if the problem persists. They finally came around on the Lyrica after numerous appeals. Faith, maybe you can get your insurance to pay if you appeal enough. Often you have to file a grievance with the state insurance board where you live.

Best Wishes,

Don

I too have sacral pain which is real nerve pain. It was were my PN started and continues to be my "main" source of pain. It was suggested for me to consider a caudal ESI injection to bathe the sacral as alternative to another CT-guided PN injection. Appreciate any input if you have had experience (positive or negative with this). I get the most relief from ice and the Lidoderm patch as well. I also have used lidocaine topical ointment here as well (just a thought if your insurance will cover this if not the Lido patch). I have also started taking a probiotic (Align) just to keep my digestive system tuned up as my pain seems to do better when I have no extra bowel/rectal pressure. Here's to a better week to everyone.

JRS wrote: I have also started taking a probiotic (Align) just to keep my digestive system tuned up as my pain seems to do better when I have no extra bowel/rectal pressure.

Tell me about it! I had a really bad pain day today because I missed my daily BM this morning. I take Lactulose every day as a prophylactic measure. But it looks like I'll have to increase the dose.

JRS wrote:I too have sacral pain which is real nerve pain. It was were my PN started and continues to be my "main" source of pain. It was suggested for me to consider a caudal ESI injection to bathe the sacral as alternative to another CT-guided PN injection. Appreciate any input if you have had experience (positive or negative with this).

Have you seen a PT and do you by chance have Sacroiliac joint dysfunction? I had an ESI at the S1 nerve root level. My pain was some better for about an hour and then I had horrible pain for several days. (It was much worse for me than my PN blocks). I had either a bad reaction to the steriod (but I doubt that because I've sine had the same steroids in my PN blocks) or the doctor got too close to the nerve and irritated it which is what I think. I had to get another MRI to make sure the nerve wasn't "compromised (as the dr. put it) and I was put on oral steroids. I had numbness and tingling in my legs and even swelling and pain in my hands (joints of fingers). Anyways, it did nothing for the pain long term. At the time I had some vulvar pain, but mostly sacral pain. About a month or so after that injection I developed pain in my sit bones and worsening of my widspread myofascial pain. I don't necessarily think it was related to the injection. I think rather PN is a progressive condition and mine worsened at that point. If the PN block numbed you then it sounds like you have PN and I really don't think an ESI is going to give you any more benefit, but I may be wrong. Are you planning to see a PN specialist or get a 3T MRI?

JRS,
Is your sacral pain on your right side only (I saw you said you have right obturator and piriformis pain) or both sides? Just wondering. Mine is worse on the left, but I have pain in the "sit bone" area on both sides (although left is worse).

Faith,

My sacral pain in mainly right side but I do have dual buttock pain -- right is just worse and both of my legs are pins and needles about half the day but again the right side is just more involved. I had contacted Dr. Potter's office to see if she would read an outside film as I have located a nearby facility here in my City that will take my insurance and also has the 3T MRI technology but Dr. Potter does not read outside films. I talked to the Specialty Imaging Center that Dr. Potter uses and they do not accept my insurance. I'm going to keep seeing the PN therapist twice a week and reassess if there has been improvement when I get to the 12 visits end of April. If not, I will try to find a way to get to NY and pay for this testing. Did you have the test by Dr. Potter? I presume anyone that is ever entrapped needs this for treatment? It is all so frustrating AND painful. You are going to a PN specialist in the Fall, correct?