Hi everyone! I feel like I am losing my sanity from exctuiating entrapped nerve pain in rectal anal area from pudental neuralgia . It has been five years now and I have been EVERY where The burning is constant now and pain after I have hit five years. Every pain management, injections, medications. Have had alternative treatments. This never stops for a minuit. There s no sleep. On top of this I have spinal cord injury and am now losing feeling in legs and feet. Afraid of losing my legs. Going all through test now for this. They tell me it is too far gone for PN except medication. I take Percocet, Neurontin, but have tried many other pills wit no relief. I am home bound with all this. I d not write much as I feel people don't want to hear any more. I see a psychologist every week. who is ls also a friend and don't know what I would do without her. Its like having a blow torch up my butt. Can never sit, walk a little with walker r stand a little. In bed with ice most of time. Ice better then any pill. I just feel I am going to lose my mind. Of course I am full of anxiety and depression. I refuse to give up---but there is loss of hope with so much agony. I am in US. I have neurogenic bladder and bowel. Have to self-cath and dis-impact, can't do this much longer either. Am now with a neurologist who is very honest with me. Have nerve pain everywhere, especially back too. Please help if you can by just listening to me! I know you are all suffering. I keep thinking I did something o deserve this!!! Please pray! I do for all of you each day.
I am getting so I just cry from the pain---don't know what else to do with it!!!!
Thank you for reading this! Hugs & Blessings!!!
trishj46
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trishj46
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18 years ago, I used to say to myself, what have I done to deserve this? But you have to get that thought out of your mind quick ( how could you have done anything ?). I also used to say, it can't get worse, But it did with a bad Acupuncturist and very recently with trigger point Physio therapy so I now have four/five areas of nerve damage including the Pudendal and counting and the Pudendal one has got worse over the years. I have been going to an advanced trained Traditional Chinese Acupuncturist with many years experience for the last 16 years and this has helped me a lot as the body is treated as a whole. But it can be difficult finding one with the advanced training,and plenty years experience. He was the 5th one I tried.
Try posting on the Pelvic Pain support network community as well as this one on "health unlocked", you will find more people there with the Pudendal nerve problem.
Sorry to hear of your problems. There is an online group called apparalyzed.com which is for people with spinal cord injuries (not just injury related ones though). You might want to check them out, as there are likely to be more people there who understand neurogenic bladder and bowel, and also neuro pain like that.
I have looked up "pudental neuralgia". There are a number of differing reasons for the cause of the symptoms. So in effect no real understanding of what this health disability is.
I also notice you are in the US so medical treatment is expensive and investigation is expensive. I cannot give advice on investigation by others. I can only give advice on some of the things you need to do. You must do your own investigation and you must do your own experiments to see what works and what does not.
1) Stop looking for a cure. There is no cure.
2) Start to work on the little things that are within your ability to do something about.
3) Part of your problem is that you have reached, or close to, or gone over your stress breakdown point. Just below the stress breakdown point the body's engineering system functions. If you go over the stress breakdown point the body's engineering system breakdown and all sorts of things happen which give you pain and discomfort. Your task is to take your stress down below the stress breakdown point.
4) To take the stress below the stress breakdown point you have to reduce as many of the little stresses as possible. Look for someone who can massage the deep body muscles. These muscles are likely to be over contracted. They need to be returned to the non contrated state. This not a means to tackle the "pudental neuralgia" it is the means to reduce the overload your body is experiencing.
This may be something that works for you or does not. You are looking to reduce overall stress to get below your stress breakdown point. You website should enable you to find a teacher in your local area. It is an effective way to reduce the stress in the body and improve your posture. It will help for your overall condition. But you do need to find a teacher that works for you.
6) Look up "McTimoney Chiropractor" I have had experience of the benefits of this. It is again a technique for reducing the stress on your body's engineering system to take your stress below the body's engineering stress breakdown point.
7) Lastly take up something like yoga to work on the muscles to return them to their uncontracted length.
You have work ahead of you. What I have suggested is not a quick fix. See what works and what does not. Note: Stretching out over contracted muscle can be quite painful and can leave you sore for a few days afterwards. However, the vast improvement in functioning that occurs will demonstrate to you the bad effects on your health of over contracted muscle.
Mindfulness and meditation are tools for studying yourself. These tools will helpful for noticing whether a treatment regime is helpful or not.
HI Johnsmith! Thank you for all the information and articles of help. Some of it I am aware of---have been researching for five years now---I know there is no cure! Having spinal injury I have always been told not to let any one touch my back with message or chiropractor. I understand about contracting the muscles, but what some people don't realize is any time I attempt to relax it by any kind of movements, I even walking, I set off the entrapped nerve which leads to the excruciating pain and burning like a blow torch up my butt. It can take weeks to get it to quiet down with ice, pain med and bed. It also radiated to vaginal area where the most sensitive part of my body is being burnt. I feel like I can write a book on P.N---but am always looking for more information and input. Thank you for helping with that and the time you took to write it. I feel in time I am going to die from pain! Sending you blessings & hugs!! I appreciate any input!!! You have been very kind!
trishj46
Trish, does the pressure in your bottom make you feel like you've poo in your bottom? Like you could push? Also, are you aware of your muscles in rectum all the time, even when laying, like they are moving up and down? Along with pain, I have this.
Trish is your bowel hyper sensitive? What I mean by that is with mine even the presence of gas or wind sets off my pain sometimes. I have been having some luck lately by using a tens machine for 30mins every day. It's called tibial nerve stimulation. Look it up and it might be worth a try.
I also roll on a tennis ball to loosen up the muscles and trigger points in the buttock.
Apparently prolapse is stretching aggravated nerves in rectum so isn't helping things for me. What helps you. I'm on 600mg pregablin and 60mg duloxetine but still not helped.
I have a lot of nerve pain in rectum and bowel. I find ice packs are very helpful. I am on 1800mg of neurontin and percocet two tabs three times a day. I find nothing really works. I hope you get some relief. It is so difficult living with constant pain. Will say a prayer for you. Hugs!!!!
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