Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

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.

@JustinMcClanahan

@ahayes, how affective is the nerve stimulator for you? Members on Connect have expressed a wide array of results, but some have found stimulators to be very helpful.

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yes I have neuropathy in feet some in hands but the feet are getting very bad it been 4 years yes how well nearve bock work are they nume stiff ?

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@cheryl1468

I heard Stanley antolak at Mayo did the surgery but he is mostly retired now I think. I tried mayo and they do pudendal nerve blocks through their pain clinic. The pudendal block did nothing so now I’ve been searching the country for the best people who really know how to treat PNE. Could we make a list together on this site?

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I had bilateral pudendal nerve entrapment surgery done by Dr. Stanley Antolak well over ten years ago. He wasn’t practicing at Mayo. He has his own practice in Lake Elmo, Minnesota I think. I went there three times from Kentucky once per month for three months in a row and had three test injections prior to surgery. The injections were great for a few hours (I think they were. lidocaine and steroids). I had to go there for a week for the surgery and be in the hospital for a couple of days. I was so hopeful that this was going to be the answer for me. My pain also was in the rectal, vaginal, buttocks and down the back of one leg. I was taking massive doses of oxycontin and it wasn’t doing much except making me stupid and dependent. The surgery had a six week recovery time also. I worked as a commercial office space designer, general construction contractor and commercial property manager so being off work that long was a big problem. The surgery did absolutely nothing to help my pain. I went through all of that, spent a ton of money and got nothing for it but disappointment. I do think Dr. Antolak might be retired. He was pretty old when I saw him and I think it was about 2005 maybe. His clinic was only for pudendal pain and I was so excited that I found someone that could “fix” my years of suffering only to be disappointed again. I eventually ended up with an implanted drug infusion system made by Medtronic. It is implanted in your abdomen area on one side and a tube is tunneled to the spinal cord and attached there. In order to qualify for the surgery I had to get off all narcotics and stay off for six weeks. All of that was pure hell but I did it. The pump contains 20 mg (half morphine and half marcaine). The medicine is not systemic. It sits a small amount in your spine where it blocks the pain signals going to your brain. I don’t have to do anything as far as controlling it. I get it refilled about every 70 days. The pump last about 6 years and then needs replacing. I am on my second one. It has completely eliminated my pain but it has made a HUGE difference. It took me from wanting to jump off a bridge to having a life. I have found that stress is a big trigger even with the pump. When my stress is low my pain is almost nonexistent with the pump. For anyone out there that has tried many things (and I had) it is worth considering. Just be sure and find a very qualified doctor who can do the surgery and manage the refills (which are done with a simple needle stick). I go to the University of Kentucky Interventional Pain Clinic.

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I meant to say it hasn’t completely eliminated my pain.

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@palmorejs

I had bilateral pudendal nerve entrapment surgery done by Dr. Stanley Antolak well over ten years ago. He wasn’t practicing at Mayo. He has his own practice in Lake Elmo, Minnesota I think. I went there three times from Kentucky once per month for three months in a row and had three test injections prior to surgery. The injections were great for a few hours (I think they were. lidocaine and steroids). I had to go there for a week for the surgery and be in the hospital for a couple of days. I was so hopeful that this was going to be the answer for me. My pain also was in the rectal, vaginal, buttocks and down the back of one leg. I was taking massive doses of oxycontin and it wasn’t doing much except making me stupid and dependent. The surgery had a six week recovery time also. I worked as a commercial office space designer, general construction contractor and commercial property manager so being off work that long was a big problem. The surgery did absolutely nothing to help my pain. I went through all of that, spent a ton of money and got nothing for it but disappointment. I do think Dr. Antolak might be retired. He was pretty old when I saw him and I think it was about 2005 maybe. His clinic was only for pudendal pain and I was so excited that I found someone that could “fix” my years of suffering only to be disappointed again. I eventually ended up with an implanted drug infusion system made by Medtronic. It is implanted in your abdomen area on one side and a tube is tunneled to the spinal cord and attached there. In order to qualify for the surgery I had to get off all narcotics and stay off for six weeks. All of that was pure hell but I did it. The pump contains 20 mg (half morphine and half marcaine). The medicine is not systemic. It sits a small amount in your spine where it blocks the pain signals going to your brain. I don’t have to do anything as far as controlling it. I get it refilled about every 70 days. The pump last about 6 years and then needs replacing. I am on my second one. It has completely eliminated my pain but it has made a HUGE difference. It took me from wanting to jump off a bridge to having a life. I have found that stress is a big trigger even with the pump. When my stress is low my pain is almost nonexistent with the pump. For anyone out there that has tried many things (and I had) it is worth considering. Just be sure and find a very qualified doctor who can do the surgery and manage the refills (which are done with a simple needle stick). I go to the University of Kentucky Interventional Pain Clinic.

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Thank u so much for this information! I recently had to quit my job because of pudendal nerve entrapment I just got my diagnosis about 3 months ago! I sit on ice packs every day when I sit down in order to be able to sit down I have to have ice packs. I have a cushion that I believe is more for someone with tailbone pain. I have been unable to find a cushion that I am comfortable with that is made for someone with pudendal nerve entrapment. I have not been given any type of painkillers I have been given gabapentin. It may or may not be helping me. As I said I’m not working now because I just couldn’t do it anymore. I also have pain in my feet on both sides on the inside of both heels and Going up and into between my legs so sometimes I sleep with ice packs between my legs to freeze the pain and make it stop. So if you have any insight on my next move or what I should do should I have hope should I try this pump that you’ve tried.? What type of Quetion do you sit on I’m curious? Have you done any injections have you done pelvic floor physical therapy? And did that work for you if so?

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@vklittle61

Thank u so much for this information! I recently had to quit my job because of pudendal nerve entrapment I just got my diagnosis about 3 months ago! I sit on ice packs every day when I sit down in order to be able to sit down I have to have ice packs. I have a cushion that I believe is more for someone with tailbone pain. I have been unable to find a cushion that I am comfortable with that is made for someone with pudendal nerve entrapment. I have not been given any type of painkillers I have been given gabapentin. It may or may not be helping me. As I said I’m not working now because I just couldn’t do it anymore. I also have pain in my feet on both sides on the inside of both heels and Going up and into between my legs so sometimes I sleep with ice packs between my legs to freeze the pain and make it stop. So if you have any insight on my next move or what I should do should I have hope should I try this pump that you’ve tried.? What type of Quetion do you sit on I’m curious? Have you done any injections have you done pelvic floor physical therapy? And did that work for you if so?

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I find it awkward speaking to the ladies when I can only make suggestions from man’s side. I had rectal repair surgery back in 2006. I was suppose to “ cure my pain” and repair the tear. Repair the tear worked the pain part didn’t. What the surgery did was damage the nerves permanently an cause peripheral damage to my feet all at once. I won’t go into all the lies I was told by that surgeon and all the doctors I saw after. Just criminal the way I was treated. It took 3 and 1/2 years before I found what really happened. The only pain med I was prescribed was the Fentynal patch. Really a bad idea as I found out later. I was on that patch from 2011 until 2016 when I had a pancreatitis attack. I found out later that the use of that patch caused that problem. Because everyone’s ignorance on what Fentynal can do to body and how bad a drug it was, in my case it stopped my pancreas from working. I started starving to death. The only reason I mentioned this is it took a year of starvation and the help a nurse advocate to find a good gastroenterologist who helped me find the cause. From what I can tell you don’t need addictions problems. I do understand your situation. Sitting, standing, laying down, eating while standing, finding something to sit on for more than five minutes, trying to stay alive, I still live with all this. What I found out, and this happens is a medical problem called Central Sensitization Syndrome. A very real medical problem that a lot of doctors are not aware of. You might want to look into this. As with a lot of this chronic pain problems it turns out there is real very little doctors can help us with. They just don’t know enough about that very complicated subject and all they are trained to do is handout very dangerous pharmaceutical drugs. As for me and I am not a doctor nor someone who thinks it is wise to give out medical advice, this is how I deal with my excruciating pain. I do use ice packs for the first onslaught of pain. Then I use a heating pad for a couple of days. I had to make my own custom cushion to sit on. A lot of experimenting on that one. I did find a very good neurologist in California. He is located in San Gabriel a clinic call California Headache and pain center. I get sterile injections. Mine last a long time probably longer than than most people. Right now mine last for 11 months pretty much pain free. I still can’t sit for more than 30 minutes as it starts to become uncomfortable, but it is better than nothing. The reason my injection lasts longer is because of this Central Sensitization Syndrome. One of things about this is I became chemically sensitive. That is about the only helpful about this medical problem. The injections last longer. One the bad things about this problem is you become hypersensitivie to pain. Really hypersensitive! In my case , my entire central nervous system has become hypersensitive. This also only happens to someone rarely. Lucky me. I don’t know how much you know about the practice of practice of meditation. I use this. It is very difficult to use this when you are in pain, very distracting, but has some benefits. This might seem strange to you but exercise is very important. I have been into exercise since I was very young so I have a lot of experience in that field. I am 71 now. If you haven’t done any you would need to start out very slowly and carefully. Having to find someone who understands your age and what kinds of exercises are right for you is very important. From what I have seen there are very few people I would trust who understands this. Be very cautious about who you go to for help. You are the best judge of what you can do and your pain level, no one else is. I have spent a lot of wasted time going to the wrong people for help. I know you are looking for even some relief but in reality you might be just as stuck in hell as I am now. There is no magic cure right now no matter what anyone tells you. You are just going to have to face that fact for right now. I read about as much as I can take in on this and I see researchers trying to find answers all the time. That is still not helping you and me right now. I just try to find a level of comfort and peace. Stress of any kind makes pain worse. They work hand and hand to make our lives worse without having medical problems. If you have found anything I have said helpful try it. None of what I have said will cause you more pain.

Liked by LeighO57

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I so relate to all you wrote. Thank you.

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@mcgatt

Eastern medical practices you mentioned. Ayur-veda?

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I wasn’t being specific when I brought this practice of eastern medicine. My doctors were trained in China, the neurologist and my acupuncturist in Korea and China originally. They explained to me how they were trained to treat the person more by taking the time to listen to the patient rather than just looking at rest test results and what they think is the medical problem. My neurologist does not use any opiates as they cause way too many other problems.

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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.

Liked by LeighO57

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Well God Bless you sweet friend. We share the same pain and it’s the most horrible thing ever. It started about 18 months ago for me and never stopped hurting since. I had to quit my job I can’t sit down anymore unless I’m sitting on ice packs so traveling or doing anything is very limited for me now I’m standing my feet hurt so bad. I’m sorry they are going through this and I hope you get better that’s gonna be my Prayer for you. Do you have any specific cushions that you could tell me about that worked out for you?

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Thanks so much for your prayers! I use cushions wherever I sit, but don't have any specific ones. They all help a little though.

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@rstollery

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.

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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.

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@palmorejs

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.

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Have a friend who has one and it enables her to function as a real person.

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@palmorejs

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

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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

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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 .

Liked by rwinney

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@swift

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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I 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.

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