Pudendal Nerve Entrapment/Neuropathy/Damage

We are looking into this kind of treatment and as it turns out there is a therapist in our home town. However, I'm not sure this is the cause of my wife's pain because it (the pain) can vary from a 1 or 2 level to other times a 7, 8, or 9 level. I would think that a myofacial condition, like a damaged nerve, would cause more constant pain. But at this point in time we will try anything. In reading all of these various causes of chronic pain issues the difficult part is choosing the right treatment and more importantly finding the source of the pain. All of the possible causes like PNE, MYF, sacrotuberous muscle, psoas, pudendal nerve root issues, spinal issues, etc. all result in pudendal nerve pain. So far no treatment that my wife has had including steroid injections to the nerve, have produced any results that would lead one to believe they know the cause/source of the pain.

@bkruppa Have any of the doctors offered your wife to try the combination of oxytocin troches and ketamine troches? The work together to relieve pain. They work better than the fentanyl patches I had for many years. If this combination works the doctor may offer ketamine infusions.

@bkruppa I can tell you that my pain from fascial tightness fluctuated and it sometimes depended on how much stress or difficulty I had in the week leading up to it. I could sleep in a position that triggered spasms and it got worse, but I made gradual improvements, and sometimes, there was a breakthrough session where I improved a lot, but all the previous treatment lead up to that. That's a question to ask the MFR therapist. Fascia is always remodeling and tends to get tighter unless you are doing something to stretch and loosen it. Anxiety and fear increase tissue tightness and pain significantly. The body also gets stuck in poor alignment that can cause nerve compression. With MFR, it can be a net of tight fascia that passes through the whole body. I know for myself, that I can feel the tightness pull from my neck and chest through my hips and to my ankles and it is a bit different every week as we work through the layers.. It might take a while to develop that kind of body awareness, but i can tell my therapist where the pull goes and how it changes while she is treating me. She can feel it too through her hands.

You have described the Myofascial Release (MFR).process precisely. It does take time and you do increase your body awareness. We do alignment every day as a part of our yoga practice. Amazing how good it feels when you imagine a string from your nose to between your toes and it is perfectly straight. Maybe a small thing and yet so important.
Be safe today and free of suffering and the causes of suffering, Chris

Very good information. We are in the process of working with our local MFR therapist. Thanks.

@bkruppa Myofascial conditions are not likely to cause constant pain. It is often variable. Also, the compression on the nerves isn’t equal to damage. Remove the tightness and you may get partial or full relief. There are stories of people who’ve had pain for years that can be relieved by the proper treatment. Yes, you may never know the source of the pain - but mainly look for what works. Good luck.

This is good news and answers some of the questions we have about variable pain. My wife is making an appointment with a local MFR therapist. I must say that I've received more helpful information on how to move forward with this chronic pain issues than I have with doctors over the past 8 years. Thank you.

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

@lois6524 Here is a link to search for a myofascial release MFR therapist https://myofascialrelease.com/find-a-therapist/

I created a discussion to organize information about MFR at
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I have not posted in a while. I had pelvic vein embolization on 11/30/18.
the next day I started having tingles down my leg, pain, pain in my buttocks and burning pain in my crotch area. For 5 weeks the surgeon kept telling me it was normal, and likely due to the compression shorts I had to wear 24/7 for 30 days. My pain was constant and approximately a level 7. Finally after 5 weeks I was able to get the surgeon to see me again, when I mentioned I thought I had a problem with my pudendal nerve ( which I discovered via internet). The surgeon then agreed that I probably should have come out of the compression shorts sooner, but nerves recover. He was no help. I have also seen a neurologist who thought based on the examination, the notes from my surgery and my feedback, that I had sciatic and pudendal neuralgia. Because my pain intensity decreased from a 7 to a 4-5 after I stopped wearing the compression shorts, he said he felt the nerves might heal, but it will take 9-12 months. In the meantime he suggested physical therapy, restorative yoga, and active release therapy. He said I would have been better off on a padded operating table as the procedure was 2.5 hours, and that it take only 20-30 minutes for a nerve to be damaged without blood flow/oxygen. His best guess was that the way I was positioned cut off the circulation to my left leg, causing the problem, which was then exasperated by the compression for 30 days.

So, I am spending lots of money right now, seeing a physical therapist weekly, paying for yoga and seeing the active release therapist as well. I will say that some days/weeks the pain is down to a 2-3. Some days/weeks it is back to a 5. I cant find a reason for the change, as many of you have also expressed. I believe that lack of understanding/control of our pain is the worst part of the journey. I would encourage others out there to also try the active release. There are probably other parts of the body that are tight/out of whack because of the compensation we must do to try and sit without tremendous pain and discomfort. The neurologist felt confident that my gait was probably different, which can then lead to knee or back issues.

I dont have the answers. Sometimes looking on this site makes me more depressed - sometimes I find it helpful. I have also turned to daily meditation (something I never did) and I am even seeing a Healing Touch practitioner I found through a local hospital. Both of those have helped. I am a person who tends to "carry on" no matter what, and both of these practices have brought tears from me that I didnt know I was holding in. I am sure many of us are in that same situation. I would recommend that anyone try both of these as well. I figured that any type of assistance was something to try and be hopeful about.
I hope all reading this find some relief today!