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.

No one can understand the pain…. I've had years of worsening pain… As well as being diagnosed with an autoimmune disease…. I don't hold back talking about it to be honest… But because of the personal nature a lot of people don't care to listen!! I feel your pain and I can sympathize….

Liked by LeighO57

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@nickyfriskel

No one can understand the pain…. I've had years of worsening pain… As well as being diagnosed with an autoimmune disease…. I don't hold back talking about it to be honest… But because of the personal nature a lot of people don't care to listen!! I feel your pain and I can sympathize….

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The feeling of pain is personal. I have spent way too many years experiencing and talking about mine to too many people. Some were sympathetic some as you said don’t care to listen. I have never looked for sympathy from anyone. The people who caused my pain never care about how they hurt me. As for the people who felt bad for me, they were my friends and family. I still feel bad for people who I hear and see in some of painful situation. The main reason for this is I can’t stop it. I know no one can stop mine. What I find ironic is that I have had a lifetime of painful situations caused by people in my life. The ironic part is that I went for help for a medical problem and was told by them that they would fix that medical problem and I wouldn’t have any more pain. What happened is just the opposite. Now I am in constant pain with no cure for the damage they did. To make a mole hill into a mountain it caused hypersensitivity in the syndrome of Central Sensitization. I am not a doctor but the truth be told, neither were these people, and there have been a lot of them. “ Doctors due no harm”, is suppose to be something that doctors were supposed to pledge themselves to. They failed with me. I know that Central Sensitization Syndrome has a genetic origin and I would qualify for that as I was probably born with hypothyroidism. This is what made a more sensitive, physically and mentally. I was very healthy and active most of my life, so no one knew I had this medical problem. I was never tested by a doctor until I was 45. Men don’t usually have a thyroid problem seems to be the way doctors think. When I finally found doctors who were interested in helping me and they took the time to listen to my history, they saw that I had symptoms that should have razed red flags. What I do find disturbing is that so many doctors don’t no anything about Central Sensitization Syndrome. They also know very little about Thyroid disease. On top of that they know very little about pain.

Liked by LeighO57

REPLY

@goldleaf check out Dr. Jonathan Kuttner’s book “life after pain”. He talks about pain sensitization and what can be done. He has a further program and many videos, too. Also, some supplements may help a lot. I’ve posted a lot of comments in the pudendal nerve thread and the “pain in the Butt” thread with specifics about exercise and supplements. Perhaps give the supplements like quercetin, resveratrol, higher vitamin c, enzymes like nattokinase, serrapeptidase, lumbrokinase a try. It might help.

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@richman54660

@goldleaf check out Dr. Jonathan Kuttner’s book “life after pain”. He talks about pain sensitization and what can be done. He has a further program and many videos, too. Also, some supplements may help a lot. I’ve posted a lot of comments in the pudendal nerve thread and the “pain in the Butt” thread with specifics about exercise and supplements. Perhaps give the supplements like quercetin, resveratrol, higher vitamin c, enzymes like nattokinase, serrapeptidase, lumbrokinase a try. It might help.

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Thank you for this reply and these thoughtful ideas. This is my reality now. I have become way to unnatural. I have developed chemical sensitivity and Central Sensitization Syndrome has affected all my senses. When dealing with my nerve damage, I was prescribed Fentynal. I was put on the patch. This was the only pain killer I was ever prescribed. I was never told what Fentynal was and was to blinded by the excruciating pain I was in to ask. Dumb I know! If I had known I would never have used it. I was never an addict but I have known people who were. Some were friends of mine. They all died. I started in 2011 and didn’t stop until 2017. I only used 25 mg. I was constantly encouraged by doctors to use a higher dosage but I was already chemically sensitive and I didn’t know it. In November of 2016 I had a pancreatitis attack and nearly died. I never had a problem with my pancreas before. As usual, the doctors there couldn’t find anything wrong with my pancreas and sent me home with this dumb reason, some times this happens and now your OK. I wasn’t. I started starving to death. No matter how much I ate I kept loosing weight. I saw too many doctors and they did the same useless tests over and over. I lost 40 lbs and I normally weighed around 188. The other problem was they thought I was starving myself. Before I finally was referred to a very good gastroenterologist, I decided to look into this myself as I couldn’t trust these people anymore. It took me about an half an hour on the computer to find my medical problem. I was only using two medications at that time. Thyroid med an Fentynal. Thyroid med would not affect me this way but when I looked into that crap Fentynal that could. Where were my doctors brains? This new gastroenterologist agreed with me. I also started seeing a new pain specialist who told me more about Fentynal. He doesn’t use any opiates in his practice. You might guess by now I no longer trusted doctors and I wanted off Fentynal. I detoxed at home with some help from these new doctors. This is when chemical sensitivity hit me. I was prescribed two drugs to help me. I tried using just one pill and it screwed me up real bad. So I had to detox with no help at all. Within 4 days of detox, my pancreas started working. I stopped loosing weight. The gastroenterologist put me on what is called a map diet. There is a high side and a low side, and both sides are all natural foods. I can’t eat anything from that high side without causing me to have an allergic reaction. I can eat everything on the low side without a problem. I can no longer drink herbal teas or herbs or spices. I can no longer use any pharmaceutical drugs not even an aspirin. That leaves me with very little options for pain relief. I get injections. Because I have chemical sensitivity, the injections last me a longer time than in most people. My senses can be a a real pain. If I am the least bit stressed, which I am all the time, well I don’t think I need to explain that. My doctors are at the point of understanding that there is very little they can do for me now. There are no answers or treatments that really help. I am constantly trying to keep updated with anything that some researcher might come up with but I am a realist. I am 71. I don’t have the finances or the ability to go more than twenty miles in one direction. I can’t get on a plane. One of the weird things is, most people who see me would never guess I have any of this. I walk twice a day with my dog for about an hour. I have peripheral nerve damage in both my feet. I exercise 7 days a week. I eat good natural foods and have gained back my weight an muscle. Then there is my reality. I am in constant pain all the time. The injection wares off about, like right now. About 7 months for the surgical area and without a warning, the pain hits all at once. My wife is use to this and all she can do is watch me scream in agony. I have learned to use hot and cold compresses to relieve some of that. Here is another reality for me. I can’t go to a emergency room for help. They can’t help me.

REPLY
@goldleaf

Thank you for this reply and these thoughtful ideas. This is my reality now. I have become way to unnatural. I have developed chemical sensitivity and Central Sensitization Syndrome has affected all my senses. When dealing with my nerve damage, I was prescribed Fentynal. I was put on the patch. This was the only pain killer I was ever prescribed. I was never told what Fentynal was and was to blinded by the excruciating pain I was in to ask. Dumb I know! If I had known I would never have used it. I was never an addict but I have known people who were. Some were friends of mine. They all died. I started in 2011 and didn’t stop until 2017. I only used 25 mg. I was constantly encouraged by doctors to use a higher dosage but I was already chemically sensitive and I didn’t know it. In November of 2016 I had a pancreatitis attack and nearly died. I never had a problem with my pancreas before. As usual, the doctors there couldn’t find anything wrong with my pancreas and sent me home with this dumb reason, some times this happens and now your OK. I wasn’t. I started starving to death. No matter how much I ate I kept loosing weight. I saw too many doctors and they did the same useless tests over and over. I lost 40 lbs and I normally weighed around 188. The other problem was they thought I was starving myself. Before I finally was referred to a very good gastroenterologist, I decided to look into this myself as I couldn’t trust these people anymore. It took me about an half an hour on the computer to find my medical problem. I was only using two medications at that time. Thyroid med an Fentynal. Thyroid med would not affect me this way but when I looked into that crap Fentynal that could. Where were my doctors brains? This new gastroenterologist agreed with me. I also started seeing a new pain specialist who told me more about Fentynal. He doesn’t use any opiates in his practice. You might guess by now I no longer trusted doctors and I wanted off Fentynal. I detoxed at home with some help from these new doctors. This is when chemical sensitivity hit me. I was prescribed two drugs to help me. I tried using just one pill and it screwed me up real bad. So I had to detox with no help at all. Within 4 days of detox, my pancreas started working. I stopped loosing weight. The gastroenterologist put me on what is called a map diet. There is a high side and a low side, and both sides are all natural foods. I can’t eat anything from that high side without causing me to have an allergic reaction. I can eat everything on the low side without a problem. I can no longer drink herbal teas or herbs or spices. I can no longer use any pharmaceutical drugs not even an aspirin. That leaves me with very little options for pain relief. I get injections. Because I have chemical sensitivity, the injections last me a longer time than in most people. My senses can be a a real pain. If I am the least bit stressed, which I am all the time, well I don’t think I need to explain that. My doctors are at the point of understanding that there is very little they can do for me now. There are no answers or treatments that really help. I am constantly trying to keep updated with anything that some researcher might come up with but I am a realist. I am 71. I don’t have the finances or the ability to go more than twenty miles in one direction. I can’t get on a plane. One of the weird things is, most people who see me would never guess I have any of this. I walk twice a day with my dog for about an hour. I have peripheral nerve damage in both my feet. I exercise 7 days a week. I eat good natural foods and have gained back my weight an muscle. Then there is my reality. I am in constant pain all the time. The injection wares off about, like right now. About 7 months for the surgical area and without a warning, the pain hits all at once. My wife is use to this and all she can do is watch me scream in agony. I have learned to use hot and cold compresses to relieve some of that. Here is another reality for me. I can’t go to a emergency room for help. They can’t help me.

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It sounds like you're living in hell… I am so sorry for you. I understand totally your pain… Sometimes I just lay in bed and cry. Narcotics help me for break through pain but no one wants to prescribe them… I find that so unacceptable when we are suffering so much!!! I go home to the UK every year and the journey is a nightmare… This forum is helping me just in the fact that people understand… I never even heard of this until this year. My doctor misdiagnosed me with an STD!!! So for 5 years I went on with my life feeling dirty as well as in agony. I actually told my doctor what my diagnosis was!!! Amazing that I pay $150 for a 10 minute appointment and I'm the one who had to research my pain….
What do you take for pain?

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The only prescription that has helped me is Hydrocodone. I take 4 tablets daily and have for more than 10 years. It helps me sleep better but does not ease my pain to any great extent.

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From what I have read, the subject of pain is glossed over when a lot of these doctors went to school. Central Sensitization Syndrome is something they never heard or read about. It seems only the very brightest who have gone on to advanced studies have some knowledge of this subject. Strange and frustrating that these people stop educating themselves after they start practicing. The lack of time is the excuse I get mostly. It is a real problem for them in the sense that medical facilities and insurance companies want that practice of pushing as many patients as possible in a day through their doors. 15 minutes a person is a stupid idea and extremely harmful. You can’t make a diagnosis of any real value. If you have something like I have, it is deadly. The constant need to prescribe a med is also bad. Most of that crap is on the pharmaceutical companies need for money. All that said, doctors are still responsible for what they do. In the case of prescribing me Fentynal, they relied on the advice of a pharmaceutical rep as to how great this crap was. Those people are sales people with little to no education in medicine. Doctors are suppose to read about the medications they use on their patients. I wouldn’t have used that on a chronic pain patient. The original intent for that med was after major surgery and for terminally ill cancer patients. As for after surgery, the use was for no longer than 5 days. A large part of the blame is on the AMA and the FDA for approving the use. To me this whole thing is about greed!

REPLY
@goldleaf

From what I have read, the subject of pain is glossed over when a lot of these doctors went to school. Central Sensitization Syndrome is something they never heard or read about. It seems only the very brightest who have gone on to advanced studies have some knowledge of this subject. Strange and frustrating that these people stop educating themselves after they start practicing. The lack of time is the excuse I get mostly. It is a real problem for them in the sense that medical facilities and insurance companies want that practice of pushing as many patients as possible in a day through their doors. 15 minutes a person is a stupid idea and extremely harmful. You can’t make a diagnosis of any real value. If you have something like I have, it is deadly. The constant need to prescribe a med is also bad. Most of that crap is on the pharmaceutical companies need for money. All that said, doctors are still responsible for what they do. In the case of prescribing me Fentynal, they relied on the advice of a pharmaceutical rep as to how great this crap was. Those people are sales people with little to no education in medicine. Doctors are suppose to read about the medications they use on their patients. I wouldn’t have used that on a chronic pain patient. The original intent for that med was after major surgery and for terminally ill cancer patients. As for after surgery, the use was for no longer than 5 days. A large part of the blame is on the AMA and the FDA for approving the use. To me this whole thing is about greed!

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@goldleaf I'm going to jump in here and say you are totally right the Dr.s only know what they are taught in school and they aren't up to date on the knew diseases and how to help but I have had fibromyalgia since the 90,s then they didn't know what caused it and today they still don't WHY? I'm a retired nurse and have seen so much that I began studying herbal homeopathic meds and have a D.O for a Dr. who is in agreement with holistic meds for this and other things I have . If you can look into functional medicine , Integrative or holistic medicine . Heck the AMA doesn't even teach nutrition to the Dr.s .

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@lioness

@goldleaf I'm going to jump in here and say you are totally right the Dr.s only know what they are taught in school and they aren't up to date on the knew diseases and how to help but I have had fibromyalgia since the 90,s then they didn't know what caused it and today they still don't WHY? I'm a retired nurse and have seen so much that I began studying herbal homeopathic meds and have a D.O for a Dr. who is in agreement with holistic meds for this and other things I have . If you can look into functional medicine , Integrative or holistic medicine . Heck the AMA doesn't even teach nutrition to the Dr.s .

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I am glad that you jumped in. I am also retired. I use to work for a telephone company and worked outside for my 25 years there. I did graduate from college and have a limited amount of knowledge about the human body. I was a physical Ed. Major. I never wanted to be a doctor even though I had relatives who were doctors. It has been my personal experience dealing with my medical problems and having to go back to school, so to speak, that has lead me to this information. Since you are someone with more first hand experience, you have confirmed my opinions. The reading of articles is also helpful. This is also my opinion, my vet for my dog gets better medical treatment than I do. One of the things I have found is that Eastern medical practices are more in- tune with the idea of how to treat patients. I am not saying Western medical practices are bad they are not, but they leave a lot to be desired. Too much of the factory production line idea and that’s bad. As I explained before I can no longer use even natural healing products. This part is what has frustrated and amazed my current doctors. I am too hypersensitive.

REPLY
@goldleaf

From what I have read, the subject of pain is glossed over when a lot of these doctors went to school. Central Sensitization Syndrome is something they never heard or read about. It seems only the very brightest who have gone on to advanced studies have some knowledge of this subject. Strange and frustrating that these people stop educating themselves after they start practicing. The lack of time is the excuse I get mostly. It is a real problem for them in the sense that medical facilities and insurance companies want that practice of pushing as many patients as possible in a day through their doors. 15 minutes a person is a stupid idea and extremely harmful. You can’t make a diagnosis of any real value. If you have something like I have, it is deadly. The constant need to prescribe a med is also bad. Most of that crap is on the pharmaceutical companies need for money. All that said, doctors are still responsible for what they do. In the case of prescribing me Fentynal, they relied on the advice of a pharmaceutical rep as to how great this crap was. Those people are sales people with little to no education in medicine. Doctors are suppose to read about the medications they use on their patients. I wouldn’t have used that on a chronic pain patient. The original intent for that med was after major surgery and for terminally ill cancer patients. As for after surgery, the use was for no longer than 5 days. A large part of the blame is on the AMA and the FDA for approving the use. To me this whole thing is about greed!

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I second every word you said, and I could add more, but I think you covered the key points. Thanks.

Liked by LeighO57

REPLY
@lkeit

II had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein issues, swelling and pain. I never had pelvic pain. I woke up the day after the surgery with numbness and tingling in my buttocks and vulva area. The surgeon said it would pass. I had to wear compression shorts for 30days and was in agony. My insides were pressing against my outsides, which were being compressed by the compression shorts.
Ifinally demanded to be seen by the surgeon 37 days after surgery and 1 week after being out of compression shorts. Doing my own research I said I thought I had pudendal neuropathy – I am textbook case for all of the symptoms of pain, tingling, burning and numbness and pressure. I feel lucky not to have any incontinence issues. My surgeon said since it is inconsistent it is not damaged and will improve, that I just need to be patient.

Meanwhile I am trying to go to work, care for my family and have a normal life. Some days are better than others. Today is a bad day, and it isn’t an illness you really want to publicize as it is such a private area of the body. Additionally I have suffered from fibromyalgia for,the last 10years. I don’t take any prescriptions, and try to be sugar and gluten free to reduce inflammation. I am not comfortable that the surgeon knows anything about this condition.

Does anyone have any advice for me? I live in Cincinnati. I don’t know what type of doctor to see- the surgeon has never in 20years had this happen. I would love to know what type of doctors other are seeking for help, and what is helping. I would be very reluctant to have another surgery since I am significantly worse off than when I had the first procedure.

Thank you

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I saw my new doc for the first time today… He's a pelvic pain specialist. Dr Michael Hibner in phx AZ. He's one of only 10 specialists in this field in the US and patients come here to see him from other countries as well as out of state. If you Google him you'll find lots of info…. He also has a couple interviews on you tube. He was very knowledgeable, considerate and caring… He gave me some hope. I saw his physical therapist first who was amazing in assessing my problem! Stay strong and I hope you can get some relief

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@nickyfriskel

No one can understand the pain…. I've had years of worsening pain… As well as being diagnosed with an autoimmune disease…. I don't hold back talking about it to be honest… But because of the personal nature a lot of people don't care to listen!! I feel your pain and I can sympathize….

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FYI…. Did y'all know that pudendal is Latin for shame! Just thought I'd share that snippet… Dang!!!

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@nickyfriskel

FYI…. Did y'all know that pudendal is Latin for shame! Just thought I'd share that snippet… Dang!!!

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What kind of pillow do u use for your pudendal entrapment ?

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I just use regular pillows and have to sleep on my side. I started reusing Gabopentin last night…at my doctor's suggestion…and I had a great night's sleep but it didn't reduce the pain. Waiting for the Tenns unit in the mail next week to see if that might help…although I've had lots of comments that it doesn't reducethe Pudental Entrapment.

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@goldleaf

I am glad that you jumped in. I am also retired. I use to work for a telephone company and worked outside for my 25 years there. I did graduate from college and have a limited amount of knowledge about the human body. I was a physical Ed. Major. I never wanted to be a doctor even though I had relatives who were doctors. It has been my personal experience dealing with my medical problems and having to go back to school, so to speak, that has lead me to this information. Since you are someone with more first hand experience, you have confirmed my opinions. The reading of articles is also helpful. This is also my opinion, my vet for my dog gets better medical treatment than I do. One of the things I have found is that Eastern medical practices are more in- tune with the idea of how to treat patients. I am not saying Western medical practices are bad they are not, but they leave a lot to be desired. Too much of the factory production line idea and that’s bad. As I explained before I can no longer use even natural healing products. This part is what has frustrated and amazed my current doctors. I am too hypersensitive.

Jump to this post

Eastern medical practices you mentioned. Ayur-veda?

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