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Pudendal Nerve Entrapment/Neuropathy/Damage
Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I'm very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want - for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.
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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.
Have a friend who has one and it enables her to function as a real person.
Hi Joan do u have a special cushion you sit on for this? Mine is getting worse and I can’t find any cushions that I can use! I’ve never felt so helpless and I feel my life is over at 58
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 .
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1 ReactionI have tried everything for my pain issues with no help. I am now giving meditation a try. It is not for everyone 100% but has helped many which is more than you can say for any of the pain sufferers writing in hoping for that magic pill or whatever. I am on the site called, curablehealth.com. There are other many sites you can try but I’m impressed with this one. Give meditation a try. What can it hurt. Nothing else works.
Thank you for such a wealth of information.
@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.
Yh sounds like good dr , Dr J.Kuttner, thank you for useful information. Mind that thinks positive thoughts will always heal faster. Hospital's have shown people with good support get well quickly, especially when you are surrounded by those that truly care for you. Finding what work's for you uniquely is still part of what we eat and drink and area where you live and how that compacts on your health. My acupuncturist talk about pressure points and it really helps, a lot . Appreciate your sharing information. Kind regards swift .HUG from England
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 suffer immensely and a chiropractor told me to press on that area and loosen the muscle up. Ask about it, I have the other one with the NEUROPATHY where the legs give out with pain that moves up and down the left leg so severe that I cannot walk. Exercise deadens it so does TIGER BALM from CHINATOWN...it freezes on the skin and soaks in a little to take the pain down. I don't know if that helps you, Take gababentin twice a day 300 mgs and my insulin and that is it. I will pray for you and me, I know GOD HEARS US....M.
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