Health Organization for Pudendal Education

JRS wrote: 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?

I haven't had a Dr. Potter MRI. I am going to get an MRI read by Dr. Olga Kalinkin in Phoenix when I see Dr. Hibner in August. Dr. Kalinkin uses a 1.5 T MRI with contrast and was trained by Dr. Potter. I have heard some people say she is not as good as Dr. Potter, but I feel like she must be competent or Dr. Hibner wouldn't recommend her. We can't afford a trip to NYC and Phoenix right now so I am going to trust that Dr. Kalinkin's MRI will be comprable to Dr. Potter's. It's my understanding that none of the PN specialists are requiring the MRI's for treatment. The MRI is not diagnostic for PNE. It is possible to have a "clean" MRI and still have PNE, so it's not necessary. You may want to put your efforts/money into getting to a PN specialist as it can take some time.

Faith wrote:I had an SI joint steroid injection last week and it did nothing for my pain. The lidocaine didn't even help short term for my sacral pain. So I feel pretty confident that my sacral pain is related to my PN. Just wanted to update this for others. I am glad I had it though just to rule things out. I still don't really understand why the PN causes sacral pain in some and not others. Maybe it has to do with the location of entrapment.

Faith, I have read that sometimes injections into the joint itself are not nearly as effective as injections into the SI ligaments. Is it possible the SI ligaments are an issue with you more than the SI joint itself?

Violet M wrote:aith, I have read that sometimes injections into the joint itself are not nearly as effective as injections into the SI ligaments. Is it possible the SI ligaments are an issue with you more than the SI joint itself?

Yes, I think that is true Violet. I wonder who would do SI ligmanet injections though? My pain doc who did my PN and SI blocks never reccommended that. He felt like if the SI joint injection didn't help it was more likely my sacral pain was PN related. I guess maybe some of the steroid gets into the ligaments with an injection? I don't know I really am not researching a lot about it because even though it is a big part of my pain, I still have horrible pain at my sit bones (obturator internus) area and I just don't feel like that is coming from my SI ligaments, but maybe i am wrong. I am hoping if it is only the SI ligaments that's the case Loretta, Hibner's PT will be able to help me figure out what to do next. Because so far PT has only made me worse.

Faith, I had sacral pain that I think was from SI ligament strain but also had many of the PNE symptoms at the sit bone and OI areas that you are describing. I think what happens is when the ligaments are not supporting the pelvis adequately due to a chronic strain and possibly being fibrotic as mine are, that things start to sag and put pressure on the nerves.

The question is, which do you fix first. I opted for the PNE surgery first and after I recovered from that I had some prolotherapy into the SI ligament. There are various providers who do this -- in my city there is a spine doc who does them and a DO. The spine doc could probably do a steroid/lidocaine injection instead of prolotherapy but when looking for a provider -- it all depends on who has an interest in learning how to do them. Sports medicine docs, pain docs, and spine docs might be the most likely.

Faith,

I also have sacral pain. Actually, as farther away from my surgery I get, as worse I am getting. It has been 3.5 years now since I had unilateral TG surgery with Dr. Hibner.

From the sacrum, the pain runs down often into my legs and down all the way into my feet. The sitting pain on the operated side is sometimes very annoying, and I shift and shift around, only to find that when I do it, my hips hurt on whichever side I am putting pressure. It seems like my whole "Fahrgestell" is out of luck.

I have had a steroid injection about half a year ago on the right side, which seemed to help. I am not sure where exactly it was put. What would be your suggestion as to where the injection should be aimed at? I might do it again before my summer visit to my sister in Vienna.

Any advise would be greatly appreciated.

spirit42

BTW Violet, if you need a translator for German, I can do that.

spirit42 wrote:BTW Violet, if you need a translator for German, I can do that.

Thanks, that would be great! There are some people interested in starting a German section of the forum. I will let them know.

Violet M wrote:The question is, which do you fix first. I opted for the PNE surgery first and after I recovered from that I had some prolotherapy into the SI ligament. There are various providers who do this -- in my city there is a spine doc who does them and a DO. The spine doc could probably do a steroid/lidocaine injection instead of prolotherapy but when looking for a provider -- it all depends on who has an interest in learning how to do them. Sports medicine docs, pain docs, and spine docs might be the most likely.

Thanks Violet. Yeah, I don't know how you know which to fix first because how do you know if your SI ligaments are strained. My PT says I'm in alignment everytime I go to PT so it's confusing. I really had PN symptoms before the sacral stuff as I had unprovoked vulvar pain during my pregnancy. So I sometimes think the PN is the source of my pain and then due to multiple aggressive SI manipulations I developed sacral pain. I've looked into prolotherapy, but I would have to go about 2 hours to get it and I can't find anyone on my insurance that does it so it would all be out of pocket and at $400 a shot I just don't know. Then you run the risk of forming more scar tissue and worsening the PN?

Faith, the scar tissue from prolotherapy would be at the injection site which isn't anywhere near the PN if you have it into the SI ligament but you're right, I've heard you can develop scar tissue at the injection sites.

I also agree with you that if you are staying in alignment it may not be a ligament strain. I had a combo of ligament strain and hardened, sclerosed ligaments. Dr. Bautrant told me he often sees hardened ligaments and that when he cuts the ligament it snaps back with a loud ping. But I don't know if there is any way you can predict before surgery if your ligaments are hardened.

I just wanted to report that for the last two days I've tried a lidocaine patch on my sacrum and I find it very helpful to decrease the pain.

Seven days of the lidocaine patch and I'm off all NSAIDS (Naproxen, Extra-Strength Tylenol). I apply it to the sacrum, where the sacral plexus is located. The patch not only relieves the pain there but also (for me) along the whole distribution of the pudendal nerve. I haven't applied ice between the legs for about five days.

Possibly my reduced pain is due to my reduced activity since I have been at home nursing a cold for three of the past seven days. I'll post again once I'm up to my normal level of activity. But today I was out of the house and now I'm back and all is fine so far.

Apparently the patch was designed to relieve neuropathic pain from shingles. So it makes sense that it could relieve pain from other neuropathic conditions as well.