Kara29
04-21-2009, 05:34 PM
Welcome to the Pudendal Nerve Entrapment site of the ICN. Pudendal Neuralgia is very similar in symptoms to IC and for some doctors, it's hard to tell what is causing what and some people may have both of these or other conditions causing the same symptoms. :welcome: Here is a wonderful website dedicated to PN/PNE and how to learn how to deal with it. The following information was used from: :http://www.pudendalhelp.com/Emotional_Aspects.html
"How to explain Pudendal Neuralgia to family and friends
Here is a wonderful excerpt written by a PN sufferer. Having such a rare disease can make a person feel very alone. Even more frustrating is that since Pudendal Neuralgia is a relatively new illness, there is a lack of information about it. For example, if you go to work and you tell your co workers that you are having "back pain", everyone can usually relate to what the person is going through. Now imagine that you have pain in an area that is not usually spoken about. How do you let others know what is going on? Well, here is an excerpt of how to explain Pudendal neuralgia to non sufferers.
"What does it feel like to suffer from Pudendal Nerve Entrapment or Pudendal Neuralgia?"
"Pudendal Nerve Entrapment is a rare and extremely painful disorder. Sufferers have described the pain as feeling like “burning acid in their pelvis”.. “their bladder and bowel were on fire”, ”the same sensation as getting soap in your eyes, only in your pelvis”.....”like you have a hot poker trapped in your bowel or vagina”....”like razor blades are constantly cutting your pelvis apart”....”like something is pulling or twisting your genital organs”... and the list goes on. Nerve pain is not comparable to arthritis, fibromyalgia or the simple aches and pains felt by the general population. It’s the sort of pain that would send most people to the emergency room.
What Is Pudendal Neuralgia or Pudendal Entrapment?
A nerve can become trapped in any part of the body. For example: carpel tunnel syndrome is essentially a trapped nerve in the wrist, but the nerve is easy to access and un trap because of it's location. Because the pudendal nerve is situated deep in the pelvis, it is difficult to access with injections or surgery. And, because the pudendal nerve serves a very sensitive area of the body: bladder, bowel, genitals...it can be more painful and debilitating than other nerve pain or entrapments.
Why is it so difficult to diagnose?
The pudendal nerve cannot be viewed by your standard medical tests such as an MRI, CAT Scan or X-Ray. The nerve originates near the sacrum in the lower back, and branches out to the bladder, bowel and genital organs. This is the core stabilizing area of the body, and is therefore densely infiltrated with connective tissue, ligaments, muscle and fascia. Picture the nerve as a long piece of spaghetti with tiny branches buried deep within all this tissue and muscle. Standard medical tests cannot visualize tiny nerve fibers. As a result, many sufferers have been misdiagnosed with lumbar disc problems, chronic prostatitis, vulvodynia, interstitial cystitis, gynecological problems, and unfortunately some patients are referred to as “head cases” when their doctors are not able to find the cause of their pain. Also, because of it’s rarity most physicians are not trained to look for it. Even the standard test for pudendal nerve function (PNLT) is not a very accurate diagnostic test. We can only hope that in the future newly developed diagnostics or a highly advanced MRI called an MRN (Magnetic Resonance Neurography) will show the nerve in detail, and this will inform a broader spectrum of the medical community of this disorder and result in a quicker diagnosis.
Why can’t they just remove the nerve?
The pudendal nerve plays a vital role in everyday bodily functions such as urination and defecation and therefore cannot be cut or removed.
How did the pudendal nerve become damaged or entrapped?
No one really knows for sure, but many sufferers have had pelvic surgeries, disease or trauma (hysterectomies, hernia, childbirth, endometriosis..etc) to the pudendal nerve area in which it is possible the nerve or surrounding structures were damaged. There is also a theory that the sacral ligaments that cross over the nerve in the lower spine become closer together as we age, and this crushes the nerve. Some sufferers could have a bodily structure that predisposed them to this disorder. For instance, they may have a longer than average pelvis which puts more pressure on the area. Physical abnormalities such as the nerve being displaced or growing on a ligament have been discovered during pudendal release surgeries. It has also been noted that people who bike a lot tend to suffer from pudendal problems. The forward leaning position of the body while biking, as well as the intense pressure placed on the pudendal area during biking could predispose a person to pudendal pain.
Why are certain activities so painful for the sufferer?
Certain positions of the body like sitting, stretching or squatting can stretch or put pressure on the already damaged nerve, causing even more pain. The main activities that the pudendal nerve patient should avoid are sitting, biking, lifting, pushing, pulling, squatting, vacuuming, and stair climbing. It is important to note that the activity may not be painful at the time. Most sufferers will develop an increase in their pain AFTER these activities and may feel a serious increase in pain for days.
What treatments are currently available?
The first step is to avoid ANY activities that increase the pain. As difficult as it may sound, it is extremely important that the patient have a trial period of a few months without sitting, lifting, climbing stairs..etc.... before trying more invasive treatments. If avoiding painful activities does not decrease the pain, a series of pudendal nerve blocks may be tried. Pelvic floor physical therapy has helped some patients greatly. Anti-inflammatories, muscle relaxants, opiates and some epileptic medications are of some help, but it is important to understand that nerve pain is very difficult to treat with pain medications. Surgery for this condition is in it’s infancy and not practiced by many surgeons in the U.S but has shown success in some cases. It is EXTREMELY important that the patient receive their diagnosis and treatment from a physician who specializes in pudendal nerve problems. It is not unusual for a patient to have to travel a considerable distance to receive proper treatment.
Why is my friend or relative so depressed or frustrated?
Please try to imagine the impact of serious chronic nerve pain, and this diagnosis in particular. Think about the things that are most important to you. What makes life worth living? Your career? Your love relationships? Your children? Your hobbies? Maybe you like to travel? Garden? Go to the movies? Hike, ski, or exercise? Every one of these activities is severely restricted, limited or downright impossible with pudendal problems. How would you make a living? How would this impact your relationships? Your quality of life? Your hope for the future? Imagine the impact this drastic change in your quality of life would have on your mood. Now try to remember the last time you felt serious pain; a toothache, a broken leg, kidney stone... etc.....We're you anxious? Depressed? Scared? Couldn't wait for the pain to stop? Imagine feeling that pain EVERYDAY. Think of what your friend or relative was like BEFORE they had this pain. I bet they were vital, productive, hard working citizens. Now they wake up everyday to serious pain, and every night they desperately try to fall asleep with serious pain. Their prognosis is unknown. There's no end in sight. Simple everyday bodily functions are extremely painful. They have to become dependent on other people for simple everyday chores. Their friends and family don't understand, and their local medical facility is uninformed. Most medical treatments for PNE are considered experimental and of unknown benefit. Sound depressing? It is.
What can I do to help my friend or relative?
Try to understand how you would like to be treated if you were in this situation. Acknowledge they're in pain. Try not to minimize their predicament. Ask if you can help them around the house, or if they need anything. Please don't say "at least you don't have cancer". There is a "c" word worse than cancer....that word is "chronic".
List of Positive Coping Mechanisms for people with a chronic illness.
Everyone copes differently. How a person copes is closely related to the quality of your support in addition to personality and your current situation.There have been studies showing that having a better positive/fighting attitude can actually have better medical outcomes. This is essentially the opposite of denial. Being in denial is OK for the short term, but facing the situation is better for long term coping.
Maintaining hope and optimism.
Proportion and balance means that a patient, ideally, should be upset to the degree that is proportional to the reality of the situation. This means to not over exaggerate or under exaggerate your symptoms and how it affects your life.
Expressing your emotions means expressing negative emotions as well as positive emotions.
Expressing all emotions, whether "positive" or "negative"will help you better cope, which can also help the immune system. Keeping anger or frustration in, can make you physically sick.
Reaching for support
Adopting a participatory stance This means participating in treatment and decision making, asking a lot of questions and changing one's lifestyle beyond what the physician recommends. In short, empowering one's self.
Finding a positive meaning.
Spirituality - You can be spiritual without being religious. Spirituality means worldliness. If a person is able to have some spirituality and/or faith/religion, studies have shown that this can improve a persons well being, attitude and good overall outcome. Maintaining self-esteem This can be done by using friends, family, colleagues and other forms of maintaining a healthy self esteem."
For more support on PN/PNE, this would be a great place to come. We really care about what you are going through as some of us can relate to from IC and PNE. They are both chronic pain conditions.
Feel free to PM me if you wish,
Kara29
"How to explain Pudendal Neuralgia to family and friends
Here is a wonderful excerpt written by a PN sufferer. Having such a rare disease can make a person feel very alone. Even more frustrating is that since Pudendal Neuralgia is a relatively new illness, there is a lack of information about it. For example, if you go to work and you tell your co workers that you are having "back pain", everyone can usually relate to what the person is going through. Now imagine that you have pain in an area that is not usually spoken about. How do you let others know what is going on? Well, here is an excerpt of how to explain Pudendal neuralgia to non sufferers.
"What does it feel like to suffer from Pudendal Nerve Entrapment or Pudendal Neuralgia?"
"Pudendal Nerve Entrapment is a rare and extremely painful disorder. Sufferers have described the pain as feeling like “burning acid in their pelvis”.. “their bladder and bowel were on fire”, ”the same sensation as getting soap in your eyes, only in your pelvis”.....”like you have a hot poker trapped in your bowel or vagina”....”like razor blades are constantly cutting your pelvis apart”....”like something is pulling or twisting your genital organs”... and the list goes on. Nerve pain is not comparable to arthritis, fibromyalgia or the simple aches and pains felt by the general population. It’s the sort of pain that would send most people to the emergency room.
What Is Pudendal Neuralgia or Pudendal Entrapment?
A nerve can become trapped in any part of the body. For example: carpel tunnel syndrome is essentially a trapped nerve in the wrist, but the nerve is easy to access and un trap because of it's location. Because the pudendal nerve is situated deep in the pelvis, it is difficult to access with injections or surgery. And, because the pudendal nerve serves a very sensitive area of the body: bladder, bowel, genitals...it can be more painful and debilitating than other nerve pain or entrapments.
Why is it so difficult to diagnose?
The pudendal nerve cannot be viewed by your standard medical tests such as an MRI, CAT Scan or X-Ray. The nerve originates near the sacrum in the lower back, and branches out to the bladder, bowel and genital organs. This is the core stabilizing area of the body, and is therefore densely infiltrated with connective tissue, ligaments, muscle and fascia. Picture the nerve as a long piece of spaghetti with tiny branches buried deep within all this tissue and muscle. Standard medical tests cannot visualize tiny nerve fibers. As a result, many sufferers have been misdiagnosed with lumbar disc problems, chronic prostatitis, vulvodynia, interstitial cystitis, gynecological problems, and unfortunately some patients are referred to as “head cases” when their doctors are not able to find the cause of their pain. Also, because of it’s rarity most physicians are not trained to look for it. Even the standard test for pudendal nerve function (PNLT) is not a very accurate diagnostic test. We can only hope that in the future newly developed diagnostics or a highly advanced MRI called an MRN (Magnetic Resonance Neurography) will show the nerve in detail, and this will inform a broader spectrum of the medical community of this disorder and result in a quicker diagnosis.
Why can’t they just remove the nerve?
The pudendal nerve plays a vital role in everyday bodily functions such as urination and defecation and therefore cannot be cut or removed.
How did the pudendal nerve become damaged or entrapped?
No one really knows for sure, but many sufferers have had pelvic surgeries, disease or trauma (hysterectomies, hernia, childbirth, endometriosis..etc) to the pudendal nerve area in which it is possible the nerve or surrounding structures were damaged. There is also a theory that the sacral ligaments that cross over the nerve in the lower spine become closer together as we age, and this crushes the nerve. Some sufferers could have a bodily structure that predisposed them to this disorder. For instance, they may have a longer than average pelvis which puts more pressure on the area. Physical abnormalities such as the nerve being displaced or growing on a ligament have been discovered during pudendal release surgeries. It has also been noted that people who bike a lot tend to suffer from pudendal problems. The forward leaning position of the body while biking, as well as the intense pressure placed on the pudendal area during biking could predispose a person to pudendal pain.
Why are certain activities so painful for the sufferer?
Certain positions of the body like sitting, stretching or squatting can stretch or put pressure on the already damaged nerve, causing even more pain. The main activities that the pudendal nerve patient should avoid are sitting, biking, lifting, pushing, pulling, squatting, vacuuming, and stair climbing. It is important to note that the activity may not be painful at the time. Most sufferers will develop an increase in their pain AFTER these activities and may feel a serious increase in pain for days.
What treatments are currently available?
The first step is to avoid ANY activities that increase the pain. As difficult as it may sound, it is extremely important that the patient have a trial period of a few months without sitting, lifting, climbing stairs..etc.... before trying more invasive treatments. If avoiding painful activities does not decrease the pain, a series of pudendal nerve blocks may be tried. Pelvic floor physical therapy has helped some patients greatly. Anti-inflammatories, muscle relaxants, opiates and some epileptic medications are of some help, but it is important to understand that nerve pain is very difficult to treat with pain medications. Surgery for this condition is in it’s infancy and not practiced by many surgeons in the U.S but has shown success in some cases. It is EXTREMELY important that the patient receive their diagnosis and treatment from a physician who specializes in pudendal nerve problems. It is not unusual for a patient to have to travel a considerable distance to receive proper treatment.
Why is my friend or relative so depressed or frustrated?
Please try to imagine the impact of serious chronic nerve pain, and this diagnosis in particular. Think about the things that are most important to you. What makes life worth living? Your career? Your love relationships? Your children? Your hobbies? Maybe you like to travel? Garden? Go to the movies? Hike, ski, or exercise? Every one of these activities is severely restricted, limited or downright impossible with pudendal problems. How would you make a living? How would this impact your relationships? Your quality of life? Your hope for the future? Imagine the impact this drastic change in your quality of life would have on your mood. Now try to remember the last time you felt serious pain; a toothache, a broken leg, kidney stone... etc.....We're you anxious? Depressed? Scared? Couldn't wait for the pain to stop? Imagine feeling that pain EVERYDAY. Think of what your friend or relative was like BEFORE they had this pain. I bet they were vital, productive, hard working citizens. Now they wake up everyday to serious pain, and every night they desperately try to fall asleep with serious pain. Their prognosis is unknown. There's no end in sight. Simple everyday bodily functions are extremely painful. They have to become dependent on other people for simple everyday chores. Their friends and family don't understand, and their local medical facility is uninformed. Most medical treatments for PNE are considered experimental and of unknown benefit. Sound depressing? It is.
What can I do to help my friend or relative?
Try to understand how you would like to be treated if you were in this situation. Acknowledge they're in pain. Try not to minimize their predicament. Ask if you can help them around the house, or if they need anything. Please don't say "at least you don't have cancer". There is a "c" word worse than cancer....that word is "chronic".
List of Positive Coping Mechanisms for people with a chronic illness.
Everyone copes differently. How a person copes is closely related to the quality of your support in addition to personality and your current situation.There have been studies showing that having a better positive/fighting attitude can actually have better medical outcomes. This is essentially the opposite of denial. Being in denial is OK for the short term, but facing the situation is better for long term coping.
Maintaining hope and optimism.
Proportion and balance means that a patient, ideally, should be upset to the degree that is proportional to the reality of the situation. This means to not over exaggerate or under exaggerate your symptoms and how it affects your life.
Expressing your emotions means expressing negative emotions as well as positive emotions.
Expressing all emotions, whether "positive" or "negative"will help you better cope, which can also help the immune system. Keeping anger or frustration in, can make you physically sick.
Reaching for support
Adopting a participatory stance This means participating in treatment and decision making, asking a lot of questions and changing one's lifestyle beyond what the physician recommends. In short, empowering one's self.
Finding a positive meaning.
Spirituality - You can be spiritual without being religious. Spirituality means worldliness. If a person is able to have some spirituality and/or faith/religion, studies have shown that this can improve a persons well being, attitude and good overall outcome. Maintaining self-esteem This can be done by using friends, family, colleagues and other forms of maintaining a healthy self esteem."
For more support on PN/PNE, this would be a great place to come. We really care about what you are going through as some of us can relate to from IC and PNE. They are both chronic pain conditions.
Feel free to PM me if you wish,
Kara29