Pudendal Nerve Entrapment/Neuropathy/Damage

I used several acupuncturists from Asia back in the 1980s when PNE first started. Unfortunately, it did no good.Using hydocodone and now Gabipentin as well let me sleep at night...but the pain remains constant. Several of yu have offered prayers, and I appreciate that being a Christian. I have prayed daily for 38 years for God to ease or remove this pain...but He hasn't reached out as yet.

I read your post and it made me cry for you. I tried everything I could possibly try including an extensive surgery. My pain was so bad I considered suicide just to end my pain. Finally, after years of narcotics, invasive physical therapy, failed spinal cord stimulator surgery, lots of other drugs, and lots of doctors, I got a Medtronic Implanted Drug Infusion Pump. This pump does NOT provide systemic medication which is the advantage. I had gotten up to a dose of oxycontin that was so big I couldn’t increase it anymore and function. I was also taking percocet for breakthrough pain and gabapentin. The pump is surgically implanted in the side of the abdomen and tubing tunneled to the spinal cord where it is attached to the spine. The pump holds 10 mg of morphine and 10 mg of marcaine and that amount lasts about 70 days depending on your settings. It delivers a tiny amount of medication into the spine per day where it blocks pain signals going to the brain. The BIG positive is it does not distribute systemically thus eliminating the side effects of narcotics. The pump lasts about six years before it needs to be replaced and the only maintenance is a quick visit to have it refilled every couple of months. There is no exposed part or control that you have to deal with although getting used to having the pump in your stomach takes some getting used to. Adjustments are made by the doctors office. I am now on my second one so I think I have now had it for about ten years. I cannot tell you the difference it has made in my life. I will say it does not completely eliminate the pain and my pain is in a very personal area but it helps so much that I can function and have some normal life. Sometimes I barely notice my pain and sometimes it flares up but nothing like it was. I can tell you that stress will flare it up so it is important to try to keep your stress down. It is manufactured by Medtronic and you can check it out on their website. If you decide to consider it find a reputable pain management doctor. Preferably at a large university medical center pain management department. I go to the University of Kentucky Interventional Pain Management Clinic.

Dear Brad, I know your post is quite old so you may have already gone down the surgery path. I have severe pudendal nerve entrapment and have for almost 20 years. I am about to turn 58. I, along with my neurologist did the home work to find me a surgeon. I ended up having bilateral pudendal nerve entrapment surgery. I had to travel from KY to Minnesota to get it done. I had to make three or four trips there prior to the surgery. Keep in mind that the pudendal nerve is quite long and wraps around other parts of your body. Looking back I don't know how a determination was made as to where to actually go in on both sides. I spent a week there and had a five hour surgery. It was a total failure. All that hope I had was gone and I still had to recover from a major surgery. I'd be interested to know if you had surgery and if it worked. I do have an implanted Medtronic pump system and have for about ten years. It has a compound of morphine and marcaine and is just delivering a small dose into my spine that helps block the pain signals being sent to my brain. It hasn't fixed my pain but it has done enough to keep me from jumping off of a bridge. Over time, I have learned that stress is a big flare inducer and I have worked hard to train my brain to push the pain to the back of my mind. For many years it was all I could think about. I hope you have made some progress since you posted. Believe me when I tell you I feel your pain and sympathize. Joan

Dear Teresa , so sorry your suffering so much pain , I've been there have been through doctors and chiropractors and acupuncture they help but even more so lifestyle changes choices you make by what you eat and drink helps even more especially ginger root either chewing some root fresh is best, add little honey and lemon to water add turmeric root too or just have lemon and honey with turmeric add little black pepper enhances turmeric properties , to enable you to get some relief from pain i don't know how you feel about things I've personally found it helps by adding more potassium into my lifestyle has helped alot my dearest precious Son is sports naturist he encouraged me to make changes swimming heals even if just gentle swim or walking in water , sea salt in your bath and adding to cooking is another thing helps , as is pineapple believe it or not( it's properties have something that helps better then painkillers and taste great too.) Carrot juice just half hour before food or potatoe juice is another protection helps alot chillies good too I've added them to home made soups add little cinnamon either to coffee if you are a coffee drinker or with chilly soups chilly con carne or fermented food even add to porridge if you eat or Add to smoothes either spinach and bananas with raspberries and add honey and cinnamon or strawberries Apple and cinnamon with bananas yummy too. . Hope at least some of this helps you to feel better. Kind regards swift
( everyone needs to stop drinking milk I've found helps better than anything ). Plant milk, rice milk ,and others help you can still have your goodness of milk without pain that goes with it sugar too it seems to be in everything you buy . Yet with all the goodness taken out, refined beyond any benefits. Molasses is much better if you need sweetness. It has goodness for balance eating. HUG from England hope you enjoy your day all from USA and beyond .

Dear Teresa , so sorry your suffering so much pain , I've been there have been through doctors and chiropractors and acupuncture they help but even more so lifestyle changes choices you make by what you eat and drink helps even more especially ginger root either chewing some root fresh is best, add little honey and lemon to water add turmeric root too or just have lemon and honey with turmeric add little black pepper enhances turmeric properties , to enable you to get some relief from pain i don't know how you feel about things I've personally found it helps by adding more potassium into my lifestyle has helped alot my dearest precious Son is sports naturist he encouraged me to make changes swimming heals even if just gentle swim or walking in water , sea salt in your bath and adding to cooking is another thing helps , as is pineapple believe it or not( it's properties have something that helps better then painkillers and taste great too.) Carrot juice just half hour before food or potatoe juice is another protection helps alot chillies good too I've added them to home made soups add little cinnamon either to coffee if you are a coffee drinker or with chilly soups chilly con carne or fermented food even add to porridge if you eat or Add to smoothes either spinach and bananas with raspberries and add honey and cinnamon or strawberries Apple and cinnamon with bananas yummy too. . Hope at least some of this helps you to feel better. Kind regards swift
( everyone needs to stop drinking milk I've found helps better than anything ). Plant milk, rice milk ,and others help you can still have your goodness of milk without pain that goes with it sugar too it seems to be in everything you buy . Yet with all the goodness taken out, refined beyond any benefits. Molasses is much better if you need sweetness. It has goodness for balance eating. HUG from England hope you enjoy your day all from USA and beyond .

@arlenejc Dr. Jonathan Kuttner wrote a book called "life after pain". He discusses the pain system, sensitization, mind control over pain, etc. and he has programs for this. The book is excellent. I did take his trigger point course and while it is good it didn't have anything new I didn't know about trigger points and how to relieve them.

While I am new to this forum, I have suffered with PNE since 1981. It has never formally been diagnosed by a physician, but I believe it happened after I fell off a ladder. I initially tried acupuncture, hypnosis and went to a chronic pain specialist who was unable to help. My pain in constant in the rectal area. I describe it as someone twisting a 2/4 in my anus (sorry for being so descriptive). I have been taking hydrocodone pills for more than 10 years now, which help me sleep. As I am 82, I pretty much figure I will suffer from this for the rest of my life. The "suffering in silence" comment above also applies to me. I might add that I also have tried hemp oil drops unsuccessfully for the past year or so and am looking into trying CBD ointment as well. Does anyone have satisfactory results from using CBD?