Pudendal Nerve Entrapment/Neuropathy/Damage

@alexking44
Hi Alex, first of all, my heart goes out to your mother who is suffering, and to you who is suffering as well having to watch her go through so much agony. So very sad.

I have read through your posts and I'm seeing that you have gotten a couple of recommendations here (including back in May) for specific doctors. I'm thinking it may be helpful if you say whether you want her to see a doctor who is in a particular location, or is your mother willing/able to travel? You ask about nerve release, is that something you are looking for specifically? Just thinking that if we nail down what it is you need in a more specific way, perhaps a doctor or two might be able to be identified that you might be able to contact.

May I also ask, what doctor(s) has your mom seen up to now and what sort of diagnosis/ treatment have they offered if any?

Best, Hank

Does anyone here have a surgeon to recommend for pudendal nerve entrapment?

If you're in the US, Dr Michael Hibner is supposed to be excellent. Not sure if his new practice is open yet. I think his email is mhibnermd@icloud.com or michaelhibnermd@icloud.com

Yea I don't have those problems just hands, arms, feet, and legs go numb.

Thank you Hank for your epathedict words of wisdom. I don't know about the imprinting as most of my family was alcoholics but I am sure it had its effects on me even if I don't remember it I know I have blocked out parts of my childhood maybe that's when the imprinting took place. Sometimes I wish I knew what I was blocking out and other times I'm glad I don't remember. But as I get older I am leaning more to wanting to know maybe then my life would make more sense to me. Why I am the way I am.

@lorettat
There is a great example of a man (called Mr. L in the book) who was able to explore his childhood traumas using neuroplasticity. It is in the book The Brain that Changes Itself in chapter 9 (covered in about 30 pages). I would recommend this for you to see how a person can manage to get to the root of their life issues caused in childhood. I see the book is available on Amazon for $6 used. If you read this you may understand better what I meant by "imprinting". Just in case you are interested. Best, Hank

I have been dealing with pudendal nerve entrapment since 2008, I haven’t found any doctors that actually help with this, I have so many injections, internal and external physical therapy. Usually what I get is that it’s all in my head. I did get a Neurostimulator, it helps with my other problems, but not the pudendal issue. By the way I was a pedestrian struck by a vehicle. I went to drs in three different states no help, could you give names of drs that have helped you?

Hi @mad, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @jenniferhunter shared a post earlier in this discussion that talks about Myofascial Release Therapy (MFR) that is known to help PNE – https://connect.mayoclinic.org/comment/218802/

The Pudendal HOPE (Health Organization for Pudendal Education) website has a list of doctors you might find helpful here – https://www.pudendalhope.info/node/54

You mentioned that you have a Neurostimulator that helps with your other problems but not the pudendal issue. Have you found anything that helps a little to provide some relief?

Really the only thing that helped me was to learn to be modest and say I can’t do that. I have gone to Myofascial Physical therapist in Arkansas and Texas that’s where I had the internal physical therapy and external therapy. She did help realize there wasn’t just that injury. She helped to get to Philadelphia because I had athletic publigia/ my abdominal muscles were torn off the pubic bone and the Doctor there helped to get surgery for the hip problems as well as having my aductor muscle released because it had drawn up so bad I couldn’t put my foot on the ground. And with all that the pudendal nerve gave me pain like I have never experienced before. I was always a very active individual, learning that that part of my life was over and quit trying to live as active as I was / took six years for me . I’m stubborn🤪I still take pains meds just not fentanyl. I was in hydraulic wheelchair service I wouldn’t have to sit, now I can walk short distances, I have a little scooter that I use occasionally. And I have family that has been very patient ,with me thru this whole journey. I just happened across this thread. I have pretty much resigned myself to having to deal with this problem from now and have gone Ben up getting help with it. Sorry so long winded but you really can’t describe this to anyone who hadn’t experienced it, thanks

When I have what I’m calling a flare up I can’t lay down either, I have found that a good ice pack . I have one that will last for hours,