Pudendal Nerve Entrapment/Neuropathy/Damage

@cake

Pain management doctors normally do all the nerve blocks and other injections. I would recommend Advanced Pain Management

new member here, i have been suffering with "for lack of better words" butt pain since 2013. It is mainly on the sit bones. My urologist, who treats me for IC, told me this was caused from the pudendal nerve. He was actually able to do an internal exam and press on the location, which cause the exact pain that if feel. Unfortunately, there is no one in my area who specializes in the pudendal nerve. So basically I don't know if it is entrapment or something else. I do know the pain has intensified and now includes spasms in the anus area.

Hi all. I'm a new member and I have read all the posts concerning the pelvic pain. Mine started 9 years ago from no apparent reasons and I've been through all the procedures that everyone has described. I've been standing up for these 9 years trying to find a specialist that knows how to deal with this problem. Sitting is very painful but one thing that no one has mentioned in their posts is laying down is just as painful if not worse. Anyone out there that has both problems? The only way I can get any sleep is by taking prescribed medication. Otherwise, I'm awake all night long and of course the pain is there all night long.

Very good post with details and I hope I can give you a little bit of help with my PNE experience. I have suffered from this debilitating pain since I was 40 years old. I am about to turn 58. I was never able to get an answer about the cause of my PNE. Just woke up one day and there it was. I thought I was going to die from the pain. I tried everything I could come up with and everything you mentioned in your post. First, let me say, do not get a Stimulator Implant. I got a Medtronic one years ago. For the pudendal nerve the trial for the implant is very difficult. There are too many wires and equipment outside your body during the trial that keep you from moving normally. In order to know if it works, you must be able to mimic your everyday life and with that trial it is impossible. I was so desperate, I bit the bullet and had one put in. First thing is, it is a very difficult surgery because you have to be awake and alert to be able to tell the surgeon where you feel the best place for the lead wires to be placed (there are four). The issue I had is you have the control of the level of stimulation you receive and because the pudendal Nerve is located where your body bends a lot it was totally impossible to find a setting that worked because as soon as you moved positions the need for more or less power was immediate. If the need was for less then the pain of too much electrical current was brutal until you could grab the controller and turn it down. I had that a long time ago and I am told the newer technology has made them better. I still think because of the location of the nerve it isn’t a good answer. I had a zillion injections. I had bilateral pudendal nerve entrapment surgery by a specialist in Minnesota (who I am sure would be retired by now). I live in Kentucky and getting that done was a huge ordeal. I made five trips there and the trip for the surgery I had to stay for a week. After, I had to stay on my couch for six weeks (which I didn’t because I am a commercial office designer and general contractor of office space and I had work to do). After going through all of that it was a total failure. I also took narcotics for years and gabapentin (which I still take). I got up to 70 mg of OxyContin a day and it wasn’t doing much. Narcotics, as you probably already know, don’t do that much for neuropathy. I ended up having the Stimulator removed after it stayed in my body turned off for several years. Then I got a Medtronic implanted medication infusion pump system about ten years ago. In order to qualify for that I had to break my dependency on oral narcotics (which was one of the hardest things I have ever done) and stay off of them for six weeks. The reservoir is implanted in your stomach on the left and tubing is tunneled around and attached to your spinal cord. My pump contains morphine and Marcaine. The difference is it delivers a very small amount that basically sits in your spine and blocks the pain signals coming from the pudendal nerve to the brain. It is totally different than taking oral narcotics that get into your entire system and your brain. There is no complicated controls the user has to adjust. It is completely contained in your body and any medication level changes are done by your doctors office. I have to get mine filled about every 70 days (refills are quick and just a needle stick into a port in the actual pump). The pump itself took some getting used to. Just having it in my body and I am fairly thin so it was a big adjustment. The pump (but not the tubing) has to be replaced about every six years. I am on my second one and due for a third in sixteen months. I will tell you it isn’t a complete fix but it took me from wanting to jump off a building to being able to have a fairly normal life. I still have times that the pain is worse than other times but I have just learned after all these years a lot of the ups and downs have to do with stress, too much sitting, squats (yes I am able to go to the gym and work and do lots of things). You just have to find your own irritants and make lifestyle adjustments. I still supplement with gabapentin. Sometimes I have bad days and sometimes I hardly notice it’s there. You also have to learn to push the pain to the back of your mind. Dwelling on it causes stress which causes it to be worse. My life will never be pain free but compared to what it used to be the pump system saved my life. If you want to talk to someone about it, find a good pain clinic. If you are near a good university with a good pain management department I would recommend that. I go to the University of Kentucky Interventional Pain Clinic for both the pump management and the surgeries. If you have any questions I am happy to answer.

I think I've had PN for 9 months now and at first laying down took the pain away, but now laying on my back I feel discomfort in my sacral area as well as buttocks. Has anyone wondered if the piriformis muscle might be involved in this? There is a surgeon, Dr. Tollestrup, who removes the piriformis muscle. I wonder if that would relieve pudendal neuralgia symptoms?

Updating the above post, I went to a medical marijuana clinic here and the manager said forget about using CBD or marijuana if you continue to use hydrocodone (which I do 4T daily}. I went to my physical therapist yesterday, and she inserted electronic sensor patches in my buttocks near the rectal area. She feels I don't have PNE but rather a stretching of the Levator Ani flaps which cause them to be too stiff and cause pain. This is also referred to as Chronic Anorectal Pain. She is suggesting a number of relaxation techniques along with goig back to the Tenns unit patches in that area. I will update the group on any (hoped for) progress.

I don't have the vagina, urethra pain. Just sit bone pain, butt crack pain, and bottom of sacrum and buttocks pain. Not sure what I have.

Melissa, where are you located? Mine started 9 months ago at the sit bone and now has progressed to the tailbone. Not sure what to do about it.

I think I've had PN for 9 months now and at first laying down took the pain away, but now laying on my back I feel discomfort in my sacral area as well as buttocks. Has anyone wondered if the piriformis muscle might be involved in this? There is a surgeon, Dr. Tollestrup, who removes the piriformis muscle. I wonder if that would relieve pudendal neuralgia symptoms?

how do you find an MFR therapist -- I am only finding a few in the Twin Cities area when I search on google