@rstollery I had recently shared this comment, and I'm resharing for you. I've spoken with my physical therapist about pundental nerve entrapment, and she said it is treatable with MFR and that insurance companies usually don't want to pay for physical therapy for this.

I wanted to share our Connect discussion about myofascial release. I do not have experience with pundental nerve issues, but I have done a lot of MFR myself, and it helps conditions of nerve entrapment by releasing the tight fascia that is binding everything together. Pundenetal nerve entrapment is on the list of conditions that MFR can help according to the founder of these therapy techniques, John Barnes. There is a provider search on the MFR website. https://myofascialrelease.com/find-a-therapist/

Here is our discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I would love to know also if anyone has ever tried the CBD ointment. Great idea! I was diagnosed a year ago with pudendal neuralgia after three years of tremendous pain and yes it is still here but medications are keeping me going even though the pain is constant. I had to fight tooth and nail and switch to multiple different doctor's to find my answer. I tried the oil drops and it was a waste for me also. I suppose the ointment maybe also but I would love to hear how it may work for someone else with PNE. I agree, I think we will be suffering for the rest of are lives unfortunately. I am not a fan having nerves burned and have heard horror stories about it and have also heard success stories. Look forward to seeing what you find out with the ointment. Good luck!

I am so sorry! I have this and I am in pain while typing this! Praying for
you

I have had PNE for 18 years. Your description about the two by four applies to me only in another private location. I have tried everything known to man i.e. Narcotics; Pelvic Floor Physical Therapy; a very invasive surgery on both sides (incisions are on each butt cheek) which I travelled from Kentucky to Minnesota (not Mayo but a PNE Clinic I think in Irmo Minnesota operated by Dr. Stanley Antolak who specializes in PNE but may be retired by now); a spinal cord stimulator implant which also failed and was later surgically removed; external lidocaine ointment; you name it and I have probably tried it. Here is how I got relief. At least enough relief to be able to function and a significant reduction in my pain. I have an implanted medication infusion system. It is made by Medtronic if you want to read about it. In order to get the surgery I had to wean off of all narcotic pain meds and be off for six weeks. The pump is placed in the left side of the abdomen and a tube is run to your spinal cord. It delivers a tiny amount of morphine and marcaine (all completely implanted and controlled by your doctor). The difference between this and narcotic pills is the amount is so tiny that you don’t get the systemic effects of narcotics. It continuously pumps a small amount of the drugs into your spinal cord where it blocks the pain signals going to your brain. They last about six years (battery life) and depending on your dose need to be refilled about every 75-90 days (refills are a simple procedure with a needle). I also take Gabapentin to supplement that. If it weren’t for that my pain was so bad I had considered suicide many times. I have also found that stress is a big factor. I am on my second pump (had one about ten years) and without it I don’t think I could have survived the pain and it’s delicate location. I completely understand your living in private pain. I still have pain so I don’t want to imply this is a complete fix because it isn’t but it made a big enough difference to allow me to live a mostly normal life. There are days when I have very little pain (almost none) and there are days I have pain that is worse. I discovered the relationship to stress just due to time and experience. I ended up getting a divorce after 13 years recently because the stress of staying in a volatile marriage was having a huge effect on my pain levels (another example of the stress factor). If you decide to investigate go to a large university pain management department or a reputable pain management facility. My insurance covered the surgery and the ongoing refills. The pump saved my life. If you have any questions just ask.

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.