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    ICN Member Kara29's Avatar
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    Everything you wanted to know about Pudendal Nerve Neuralgia and Entrapment

    I found a site that really is comprehensive in talking about PN/PNE and I wanted to share most of it on here. It's all quotes from that page but the information was not easy to find. When I stumbled across it, I had to share it with You!

    Here's the Main Page that I am going to copy and paste here so we have it all here and don't have to go all over to find it again.............http://www.pudendalhelp.com/treatment_options.html

    SYMPTOMS

    1. How do I know if I have pudendal neuralgia (PN)?

    If you have pain in the pudendal nerve distribution area and doctors cannot find a reason for it then you might have pudendal neuralgia. The pudendal nerve innervates the penis and clitoris, bulbospongiosus and ischiocavernosus muscles, and areas around the scrotum, perineum, and anus. (see anatomy section) The pain can be burning, stabbing, aching, or just a sense of numbness with loss of sensation. Sometimes the pain is mild and comes and goes for several months or years. Sometimes the pain hits suddenly and never goes away. Sometimes it just comes on slowly and gets worse over time. Sometimes you can associate the start of the pain with a traumatic event or pelvic surgery. Each case is different.
    2. What is the difference between pudendal neuralgia (PN), pudendal neuropathy, and pudendal nerve entrapment (PNE)?

    While the medical community is still in the process of defining some of these terms exactly, there is some agreement on what the terms mean. Neuralgia is typically thought of as pain along the course of a nerve due to inflammation. Neuropathy is associated with a pathology or functional disturbance in the nerve. These two terms are very closely related and sometimes used interchangeably. Often these terms are abbreviated as PN in the pudendal community.

    Pudendal nerve entrapment (PNE) is a more specific term describing a neuropathy or neuralgia that is associated with the nerve being tethered by fascia, compressed by ligaments, enlarged muscles, and/or other structures. Sometimes the nerve is restricted so that it cannot glide easily resulting in a stretch or tension injury to the nerve. Generally if the nerve is impinged upon by tight, tense muscles it is not considered a true entrapment because surgical intervention is not required to relieve the impingement. If the impingement is due to tight muscles, physical therapy might help relieve the tension.
    3. What is pudendal nerve entrapment (PNE)?

    Pudendal nerve entrapment (PNE) is a condition causing pain for no apparent reason in the lower central pelvic areas. These are the anal region, perineum, scrotum and penis, vulva and clitoral areas. Pain is worse upon sitting and less when standing or sitting on a donut cushion or toilet seat. But there is no one particular pattern that dominates. Pain can be in just one area, several, or all. It can be unilateral or bilateral (on one side or both sides). In some cases standing will relieve the pain but lying down will not. However the pain can be present in any position.

    Because pudendal neuralgia is nerve related, some of the pain that is felt might be different from regular muscular pain. Pudendal neuralgia sufferers usually describe their pain as stinging, burning, stabbing, aching, knife-like, irritation, cramping, spasm, tightness, crawling on the skin, twisting, pins and needles, numbness, and hyper- sensitivity. As Prof Roberts writes, "The character of the pain consists of sensations of burning, torsion or heaviness, and also of foreign bodies in the rectum or vagina. The pain is piercing and very comparable to a toothache." The pain may feel shallow or deep. It often starts in one place and progresses.

    Frequently there is also urinary, anal, or sexual dysfunctionality. There are many other pain areas associated with PNE, such as internal organs or pain radiating down the leg. However, if pain is not present in the "classic" areas, the condition is less likely to be PNE. It may be another nerve, such as the cutaneous, or it may not be nerve damage related at all.

    As Professor Robert writes:

    "The main daily activities requiring the seated position (work, meals, driving, theaters, etc) are no longer available to these patients, whose mental attitude is one of chronic pain sufferers so obsessed with their miserable state as to be rapidly regarded by their doctors as psychiatric cases."

    Prof. Robert and his team have published an article outlining the criteria they believe points to PNE.

    The pain is sometimes so intense that suicide is considered. But since a change of day to day habits can alleviate the pain some or a lot, people make those changes and usually learn to tolerate the pain that remains. Some cases have gone on for 20 years. Many seem to be in the 5 to 10 year range, apparently because that's how long it takes on the average to stumble onto a doctor that can correctly diagnose PNE.

    Strictly speaking, PNE is a subset of pudendal neuralgia or pudendal neuropathy (PN). Neuropathy is nerve disease or damage. PNE involves entrapment, while PN involves entrapment, disease, or damage of any kind. In your initial diagnostic stages it's more useful to think PN. As tests become definite and point to entrapment, it is time to think PNE.
    4. What causes PN?

    PN can be caused by an injury to the nerve or any disease of the nerve that causes inflammation or demyelination of the nerve. Some people have associated their PN symptoms with post-herpetic neuralgia, Lyme’s disease, multiple sclerosis, or other autoimmune illnesses. Other people can point to an injury or pelvic surgery as the start of their symptoms. Heavy exercise is considered one of the causes of PN. Activities that require repetitive hip flexion such as cycling and weightlifting can be the culprit. Jobs that require heavy lifting or many hours of sitting may be the cause.

    "The pudendal nerve comes from the sacral plexus (S2-S4) and enters the gluteal region through the lower part of the greater sciatic foramen. It courses through the pelvis and around the ischial spine and between the sacrospinous and sacrotuberous ligaments. It splits up into the rectal, anal, perineal and clitoral/penis branches.The nerve turns forward and downwards through the lower sciatic foramen underneath the surface of the levator muscle into the Alcock's canal where the nerve is flattened out between this double fascia (aponeurosis). The two most important narrow passages are around the ischial spine between the sacrospinous and the sacrotuberous ligaments (80%) and in the Alcock's canal (20%).Cycling, riding and long drives can kick off the symptoms of pudendal neuralgia" (Referenced from a Mayo Clinic article)

    PNE is caused by entrapment of the pudendal nerve at any of various places on the nerve. Nerve entrapment occurs when a nerve is constricted for some reason and responds by inflammation, scarring, or thickening. These can cause nerve diameter to increase and the nerve to misbehave.

    The initial constriction is caused by pressure or trauma of some type or an unknown reason. If this occurs where a natural constriction is also present, such as where the nerve passes over a bone or through a tunnel, then once the nerve increases in size a vicious cycle can begin. As the nerve swells it encounters a natural constraint. This increases prolonged pressure on the nerve, which causes more swelling, which causes more pressure, and so on. This vicious cycle explains why the pain can go from a low to a high level so fast, and why once a case becomes chronic, very little sitting, no sitting at all, or the least bit of movement can elicit pain.

    Entrapment is a bit of a catch-all term. Stretching or rubbing of the pudendal nerve can also cause PNE. In all cases the result is nerve irritation, which causes improper functioning of the nerve. An entrapped nerve misreports pain and causes organ dysfunctionality such as urinary, defecation, and sexual problems.

    PNE is usually precipitated by prolonged sitting or trauma to the sitting area, combined with a genetic and developmental susceptibility. Each person's body is unique. Tissue mass varies. Nerve routes vary. The amount of pressure a nerve can take before responding with inflammation varies. And so on. Putting all this together explains why some people can sit for 10 hours a day for 30 years and not get PNE, while someone else may sit 6 hours a day for 5 years and get it. However, some cases of PNE involve no prolonged sitting or trauma. Life has its mysteries....

    PNE is common in high mileage bicyclists who do not stop cycling when the pain starts. It's so common in this group it's nicknamed Cyclist's Syndrome. The prolonged sitting pressure, the continual nerve rubbing and stretching from pedal pumping, and the extremely high seat pressure on the ischial spine and perineum all combine to form the ideal conditions for PNE. Similarly susceptible groups are those using rowing machines or doing lots of sit-ups. The human body was simply not designed for these behaviors.
    5. What is PN frequently misdiagnosed as?

    PN is so rare and understanding of it is so recent that in most cases it goes misdiagnosed or undiagnosed for years. As one article says:

    "Most patients felt hopelessly isolated as the world's only victim of a malady without a name. Patients wondered whether their imagination was the source, but they knew it was not. They report that acquiring a name for their affliction and contacting other sufferers gave important help even while symptoms persisted." - Source: - PNE: Early Symptoms, Operative Techniques and Results.

    It is important to understand that there could be other causes that have some similar symptoms and underlying conditions such as tumor and diseases of the spine or skin. It is most common that people with PN are diagnosed with chronic or non-bacterial prostatitis, prostadynia, vulvodynia, vestibulitis, interstitial cystitis, chronic pelvic pain syndrome, proctalgia, proctalgia fugax, orchialgia, hemorrhoids, coccydynia, piriformis syndromes, anorectal neuralgia, pelvic contracture syndrome/pelvic congestion, ischial bursitis, or levator ani syndrome. All of these above disorders can "mimic" Pudendal neuralgia symptoms or actually be caused by pudendal neuropathy.

    Chris R, a PNE sufferer and former medical student at the Medical College of Georgia, US, and now a doctor, had this to say in 2002:

    "Many PNE patients are originally diagnosed with one or multiple vague pelvic pain disorders before getting the correct diagnosis. The most common diagnoses are: prostatodynia, nonbacterial prostatitis, idiopathic vulvodynia (idiopathic means unknown cause), idiopathic orchialgia, idiopathic proctalgia, idiopathic penile pain, Levator ani syndrome, and coccydynia.

    "The reason for these many diagnoses is that the pudendal nerves innervate urogenital and anorectal tissues, cutaneous (skin) tissue, and many small but very important muscles in the perineum. The muscles include: the external anal sphincter, puborectalis portion of the levator ani muscle, superficial and deep transverse perineus muscles, ischicavernosus, bulbospongiosus, and the external urethral sphincter.

    "Irritation of the pudendal nerves can cause muscle spasms in one or more of the aforementioned muscles. Spasm of the external anal sphincter can cause constipation (anismus). Similarly, spasm of the external urethral sphincter can cause urinary hesitancy, mimicking prostatic problems. Spasm of any of the other muscles can cause discomfort and a feeling of tightness, cramping, etc."

    Some doctors have never even heard of pudendal neuralgia. So after numerous tests where the doctors can find nothing wrong, sometimes they assume that the problem must be psychosomatic and make referrals to counselors and psychiatrists. Unfortunately, sometimes people with pudendal neuralgia go through numerous doctors and tests before finally meeting up with a doctor who understands pudendal neuralgia and how to diagnose it. Sadly, often PN patients are told their problem is psychological.
    6. How is PN correctly diagnosed?

    Correct diagnosis follows these main stages:

    A. The exam.

    For guys the exam should include digital rectal exam. For ladies the exam should include a pelvic exam.

    What is your history? Were you exercising heavily, did you have a pelvic surgery or vaginal delivery, were you sitting long hours? Is your pain in the distribution area innervated by the pudendal nerve? Is there increased pain or tenderness when your doctor presses along the course of the nerve via the rectum or vagina?

    B. Elimination of other factors.

    Often the pudendal nerve doctors recommend an MRI to rule out obvious problems such as tumors or spinal abnormalities. Each of the PN doctors has their own requirements on what type of MRI they prefer. It is also important to rule out other problems such as urinary tract infections, prostate infections, or sexually transmitted diseases. Disorders that might cause peripheral neuropathy such as Lyme’s disease or multiple sclerosis should also be ruled out. You should have a stool examination for possible blood. (Screen for colorectal cancer and other problems.) Guys should have a PSA.

    C. Pelvic floor physical therapy that includes myofascial release.

    If your doctor decides your problem might be PN often they will refer you to a physical therapist for pelvic floor physical therapy. It is difficult to distinguish between PNE and pelvic floor dysfunction (PFD) because typically PNE can cause PFD and the symptoms can be similar. A course of pelvic floor physical therapy can help to determine if you just have PFD. People with PNE are less likely to have good results from pelvic floor physical therapy.

    D. Electrophysiological testing including EMG’s and PNMLT.

    Results of these tests are not 100% accurate but they can help add to the overall picture as to how well the nerve is functioning. Sometimes, although not always, there will be a latency with the EMG and PNMLT testing that indicates a neuropathy. There are some doctors who rely mostly on the PNMLT and there are others who rely mostly on the EMG. Some doctors feel that utilizing the EMG, they can actually "tell" where the entrapment is.

    E. Magnetic resonance neuography.

    This is similar to an MRI but it uses special software to enhance the image of small nerves that are difficult to see on a normal MRI. There are only a handful of centers in the world where you can have this test and entrapments do not always show up so the test is only accurate for a diagnosis of PNE part of the time.

    F. Pudendal nerve blocks.

    If you experience significant pain relief for even a short time (several hours) from a nerve block that may mean you have pudendal neuralgia. However pudendal nerve blocks can temporarily ease the pain caused by other problems in the distribution area of the pudendal nerve so the nerve block is only one of the tools used in the diagnosis of PN.

    None of the diagnostic tests for PN and PNE are 100% accurate so the more of these tests you have the better your overall picture will be in determining your diagnosis.
    7. What should I do if I suspect I have PN or PNE?

    * A. Find a doctor who knows something about it or is willing to learn -- one who will make referrals for you and prescribe pain medications if needed. This might be your general practitioner. Often a pain management doctor will prescribe pain medications if you need them. Other specialties that are sometimes familiar with PN/PNE are gynecologists, urogynecologists, urologists, or neurologists. You may print out information from this website to take to your doctor.

    * B. Avoid activities that aggravate your pain. You may have to make some lifestyle changes . At first this can be very difficult but it is important to avoid further damage to the nerve. Sitting, bending, or other hip flexion activities can cause further nerve damage and should be avoided. Since chronic pain can cause permanent changes in the spinal cord and brain it is important to try to keep your pain levels low. To aid in this see the medication section of this website under treatment options.

    * C. Purchase a cushion for when you absolutely have to sit.

    * D. Make sure your doctor rules out other possible illnesses such as an infections, cancer, or tumors. (See question 6.)

    * E. See a pelvic floor physical therapist who is knowledgeable about pudendal neuralgia and can perform pelvic floor myofascial release and trigger point therapy. If you cannot find one near you on this PT list you can check at http://www.apta.org//AM/Template.cfm?Section=Home or http://www.pelvicpain.org/ You might also check with the largest women’s health clinic or university hospital closest to you.

    * F . If the pain does not improve or if it worsens, you may want to consider pudendal nerve blocks or try Botox injected into the pelvic floor muscles although there is debate in the medical community as to whether Botox should be tried prior to surgery.

    *
    G. If your pain continues and you have no quality of life you may want to consider surgery. You can choose to have an intrathecal pain pump or neurostimulator implanted. These may help to control your pain but may not offer a chance for the nerve to heal. The other surgical option is pudendal nerve decompression surgery but you will have to travel to see one of the PNE experts. They will most likely perform some tests and give you a series of nerve blocks. If they believe you have pudendal nerve entrapment you will have the option of pudendal nerve decompression surgery.

    If you have PN symptoms, you are in a tricky situation. There are so few experts in the world that you have only two basic choices: go see the experts or educate your doctor.

    Do not postpone diagnosis and treatment. The longer the delay, the worse the pain tends to become. The longer and worse the pudendal nerve has been irritated, the less likely steroid injections are to be the cure, the more likely surgery will be needed, and the less likely surgery will be a complete success. This is because nerve damage, once it goes past a certain point, becomes irreversible. As one article says:

    "Delay in diagnosis and treatment was the rule. Patients came to my attention an average of 7.3 years after onset (Range 0.5 to 20). Patients consulted urologists, gynecologists, neurologists, surgeons and internists on multiple occasions and reported little relief from treatments directed toward the anus, the bladder, the prostate and toward perineal muscle spasms. I record earliest symptoms because delay is considered a source of treatment failure." - Source: PNE: Early Symptoms, Operative Techniques and Results.
    8. Who are the PNE experts?

    See the list of physical therapists. Some physical therapists are specifically trained to evaluate and treat people with PN or PNE. Before traveling a long distance to a PNE physician there may be a trained physical therapist near you who can do a preliminary evaluation and treat you for pelvic floor dysfunction.

    See the list of doctors. Some of the PNE doctors give short free initial phone consultations. Some of them prefer to communicate by e-mail. Most of them require a series of 3 nerve blocks prior to PNE surgery and many of them like you to have at least one of the nerve blocks done by their team.

    As PNE becomes more widely known in the medical profession, we can expect to see more experts emerge. The advantage of seeing an expert is you may avoid experiences like this one, from the archived Pudendal Neuropathy website's Yahoo posts.

    "Date: April 13, 2002. Please be careful, as colon & rectal specialists ARE SURGEONS. As another group member already stated, doctors are going to treat you in the area they are trained. After many other types of doctors, I went to one approximately 2 yrs. after my pain started, and he recommended a partial lateral sphincterotomy. This is literally cutting the sphincter muscle - in my case just one side because the great majority of my pain is on the left side. He told me he didn't know about the vaginal pain but 95-98% "guaranteed" me I would no longer have rectal pain or burning. I can't tell you how much worse this has made me and how much more difficult bowel movements have become! However, I am lucky not to have fecal incontinence! Ellen."
    9. How can I educate my doctor?

    You may print off any material from this website or you can direct your physician to this website. This site can give your doctor a general overview of PN/PNE and can lead to avoidance of unnecessary treatment, avoidance of delay, and to the correct referrals. Those three things should be your goal.

    Show them the following documents:

    A. This document.

    B. PNE by Prof Robert, 1997 or any of the articles about PN listed in the publication section or the surgery section of this website.

    C. Pudendal neuralgia: CT-guided pudendal nerve block technique, 1999. A capable specialist can use this to do an ischial spines nerve block on you, which is just what Dr. Murphy did on Dr. Ken Renney long ago. As Ken put it, "He learned on me."

    D. Print the male or female pudendal nerve image in the anatomy section and use it to discuss details of your pain with your doctor. Try to think and talk in terms of how nerve damage of some sort could be causing pain in specific nerve areas. Looking at the image, discuss how to diagnose your problem with specific tests at various places on the nerve. Also discuss how there are only four main ways to cure your pain if it's PNE: pressure reduction (such as not sitting or sitting with special cushions), muscle reeducation, injections, and surgery. Use the image and documents to form a mental model of your case.

    E. Then suggest they study the many documents, images, and material online at this site and others, unless they have a better source.

    F. At some point you may need to see an established expert. But these documents and this site can give your doctor a general overview of PN.
    10. What should I do first? Stop making the problem worse.

    The first thing to do is stop making the problem worse. Minimize your sitting time and when you do sit, sit on a cushion with a center cutout. This should be large enough to avoid pressure on the areas where pressure causes pain, and ideally the entire pudendal nerve area to be safe.

    Don't try to be a hero and "tough it out." If you are a cyclist, stop that altogether. Minimize sitting like a fiend. This is called hyperavoidance of sitting. If you doubt the importance if this advice, just listen to the many tales of woe from those who sat a lot and now wish to high heaven they didn't. The reason is excess sitting can cause irreversible nerve damage.

    The two images below show typical pressure distribution patterns for sitting upright in chairs. Note the extreme pressure on the two ischial tuberosity bones, which normally carry about 75% of your weight when seated. This can be greatly reduced through use of contoured cushions or chair seats. Note there is less pressure in the central area. This can be further reduced with a trough or hole in the center of a sitting cushion. But the best thing to do is sit less.

    You can tilt your seat angle forward about 8 degrees and/or lean forward. Both put more weight on the thighs and less on the problem area. Seat tilt is better because of the better back angle and reduced sheer pressure. Seat tilt can be accomplished with an adjustable chair, putting books or blocks under the back legs, or a wedge shaped piece of foam. A kneeling chair can be used for several hours a day for an even larger tilt, but this will probably require chair modification to use a better cushion. You can also consider the latest generation of office chairs or bicycles.

    The three images on the left show the more even pressure distribution in the buttock area and the absence of high ischial pressure, with an appropriate cushion or chair.

    There is no cushion or chair that works for everyone. Some PN'ers have used toilet seats and put canvas around it to sit. Others have bought high quality seat cushions which are more expensive while others have bought foam from their local store and made a U shape for their cushion. If you can keep pressure off of the pudendal nerve, any cushion would work fine. It might be worth looking into the different companies that offer U shaped cushions and select the one that you think may work for you. Some cushions have weight limits so be sure to read the manufacturers description of the cushion carefully and what the weight limits are. Large people may need a heavier and firm cushion while smaller individuals might be OK with a softer cushion. Just be sure to research before you buy.

    Bicycle seats are now available for people with "cyclists syndrome". The name of one of these seats is called a "horse saddle". When looking for a good bicycle seat, you want to make sure that there is a cutout in the middle of the saddle of the seat, so it can take the pressure off of the nerve. All of the cushions and/or bicycle seats still need to be used in moderation, as some pressure may be put on the pudendal nerve while sitting.
    11. What should I do second? Accept your condition.

    The second thing to do is accept your condition for what it is. Receipt of bad news causes a well known five step process in humans: denial, anger, depression, bargaining, and finally, acceptance. This is the Cycle of Acceptance. One usually bounces around between steps before finally getting to and remaining in full acceptance. If the bad news is minor the cycle will be swift and barely noticeable. If major, the cycle can take years or never be completed.

    The reason you must come to accept your condition is that if you don't, you will be less rational. This will cause two things: you will probably make your condition worse, and you will not be able to self manage your case very well. You will be stuck in the cycle and find yourself frustrated and angry at doctors who fail to help you, when what's needed is a calm, cooperative, investigative attitude. If you find yourself angry or depressed much more than usual, you are stuck in the cycle. When it comes to mental clarity and happiness, it's not the pain but the cycle that matters most.

    As one patient put it, “I’m constantly saying to myself,” It could be worse”. This can help me to accept that my condition may never improve, and that if it doesn't I have a lot to be thankful for anyhow. I have many friends with worse medical problems, some of whom have died. Until I accepted my condition I was so full of anger at doctors that I was unable to manage them or talk to them effectively. I was in one big emotional knot, barely moving forward with a rational plan.”

    While it's true that the US medical system is full of doctors whose only goal is to get you out of the door in 15 minutes so they can see 2000 or so patients a year, it's also true that no system is perfect, the one we have is much better than the one we had 100 years ago, and there are a few good doctors who care. The reason so many doctors are in a rush and assume they know all there is to know in their specialty is because the cost management side of the health care industry causes them to behave that way. The system is faulty, not the doctors.

    The idea is to not blame others, which is scapegoating. Instead, don't blame anyone. Rise above that low level of thinking and see the situation for what it is.
    12. What should I do third? Develop a diagnostic plan.
    Last edited by Kara29; 04-07-2009 at 11:08 AM. Reason: Title
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  2. #2
    ICN Member Kara29's Avatar
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    Symptoms continued

    Symptoms Continued


    The third thing to do is develop a diagnostic plan with your doctor. Remember now, you may or may not have PNE.

    Here is a sample diagnostic plan but each case is different so this should be guided by your physician.

    A. Have an MRI of the lower spine, pelvis, and sacrum. The PNE doctors each have their own protocol so while it is OK to have this done locally, before scheduling your MRI it is good to check with the PNE doctor you may eventually wish to see so that you know exactly what type of MRI they require. This can help you avoid having an MRI twice.

    B. Rule out other conditions by having blood work to rule out other sources of peripheral neuralgia, like Lyme's disease. (See question 6.)

    C. Try all non invasive techniques first, like pelvic floor physical therapy and medications to help with neuropathic pain.

    D. Do a pudendal nerve motor latency test (PNMLT) or other EMG tests.

    If physical therapy is non effective, the medications are not giving you enough relief, and your quality of life is very low due to intense pain, then you may want to move on to option E.

    E. If your pain is in the ischial area you could try a nerve block on the posterior cutaneous nerve. If the pudendal nerve seems to be the culprit you could try a pudendal nerve block.

    The collection of all these tests is called a workup. An incomplete workup causes false assumptions, which can all too easily cause a false diagnosis, a guess, no diagnosis at all, or a wrong next stage plan. An excessive workup causes confusion, delay, and unnecessary expense. Only an expert can determine what a patient needs for a complete and non-excessive workup.

    Some of the tests you need for a work-up can be done through your local physician but you may have to travel to a PNE expert for some of them.

    Remember that most tests turn out normal and so serve only to rule out an area. Diagnosis proceeds just as a detective works: proof by elimination and revelation of cause and effect. Thus in a difficult case many, many tests are necessary.

    Sherlock Holmes explained all this, the fine art of investigation, quite well in Sign of the Four, published in 1890. This is the source of one of his most famous quotes. (Now for some fun. Forget all your troubles for a moment. Italics have been added to highlight the quote. The all caps are in the original.)

    "How came he, then?" I reiterated. "The door is locked, the window is inaccessible. Was it through the chimney?"

    The grate is much too small," he answered. "I had already considered that possibility."

    "How then?" I persisted.

    "You will not apply my precept," he said, shaking his head. "How often have I said to you that when you have eliminated the impossible whatever remains, HOWEVER IMPROBABLE, must be the truth? We know that he did not come through the door, the window, or the chimney. We also know that he could not have been concealed in the room, as there is no concealment possible. Whence, then, did he come?"

    "He came through the hole in the roof," I cried.

    "Of course he did. He must have done so. If you will have the kindness to hold the lamp for me, we shall now extend our researches to the room above, the secret room in which the treasure was found."
    13. What is a nerve block?

    In the context of PN, a nerve block involves injecting a liquid at a precise location near a nerve. For a small nerve like the pudendal that takes slightly different paths in different people, this requires more than just studying a person's body and deciding where to insert the needle, at what angle, and how deep. It requires imaging of some type, such as X-ray (fluoroscope), ultrasound, or CT. Without the accuracy these imaging systems provide, it is difficult or impossible to know if the needle tip is located correctly. If incorrectly located, the nerve can be damaged or the injected liquid will be too far away to have its intended effect. Dr. Bensignor says the needle tip must be within one millimeter of the target. However, even with image guidance it is possible for the block to miss its mark.

    There are two main types of injected liquids: a local anesthetic and slow-release steroids. The local is a short term diagnostic tool. If the pain goes away and stays gone for the short term, the location was correct and the nerve can be suspected of being a contributor or the sole source of pain. The steroids are a long term therapeutic attempt. In some cases they will cause the nerve, if it is irritated, to get better. This can take days or weeks, and improvement may be temporary or permanent. This delay explains why physicians prefer a delay of several weeks between nerve blocks with steroids. If the nerve is not irritated, the steroids have no effect. Some doctors use heparin, an anti-inflammatory medication, instead of steroids.

    Two main locations are used. The ischial spine block is done by injecting into the sacrospinous ligament. Alcock's canal block is done by injecting into the sacrotuberous ligament. These are not the same as the blocks carried out for childbirth pain. In some cases the blocks may worsen the pain a little but this should last only a few weeks. In a few cases nerve blocks have caused a permanent worsening of pain possibly due to the nerve being “nicked” by the needle, a reaction to the medication, or formation of scar tissue.

    It appears that steroids have less than a 5% chance of curing PNE. Of the many nerve blocks that Dr. Ken Renney's team has done, they have "cured" only one patient with nerve blocks alone. This was a 17 year old male football player who had had the condition for only 3 weeks. After two injections he returned to football with "no discomfort." As Ken wrote to one patient on 10/1/2003:

    "We have only cured ONE person [with nerve blocks] since we started and I have seen about 150 patients. Not great stats but it's the truth."

    This agrees with the generally low percentage rate seen in PN patients as a whole on the discussion forums. We were all scratching our heads. No one seemed to know anyone who had been cured by nerve blocks alone, though a few had seen a reduction in pain.

    When the nerve block is conducted under guidance, the patient is asked to lie down in the prone position. Using a small needle the doctor injects an anesthetic to numb the buttocks prior to injecting with the larger needle that targets the pudendal nerve. When the doctor is able to find the pudendal nerve, he will then inject either the local anesthetic and the long term steroid or heparin. The procedure itself lasts approximately 30 minutes. This is done on an outpatient basis. No overnight stay is required.

    If the injection relieves your pain that is considered a positive response to the nerve block and the pudendal nerve may be the source of your pain. If the injection did not provide any relief there are two possible conclusions.

    1. The pain is not as a result of the pudendal nerve or

    2. The physician did not get close enough to the pudendal nerve to feel any effects.

    After a pudendal nerve block it is possible to evaluate whether the block hit the target of the pudendal nerve by testing the perineum, clitoral, and anal areas for loss of sensation and numbness. Sometimes the physician might order another block four to six weeks after your first block, to make sure that they can entirely rule out pudendal neuralgia, by trying to see if they can get close enough to the nerve again.

    Occasionally medication from the nerve block can wander into the area of the sciatic nerve making it difficult for the patient to walk. This problem typically subsides within 24 hours.

    Pudendal neuralgia: CT guided pudendal nerve block technique - This highly technical 1999 article describes the anatomy involved and how to perform nerve blocks. As the article says, "Infiltrations are made first at the ischial spine. If two consecutive nerve blocks into the ischial spine fail, a third injection can be made into the pudendal canal.”

    Below are some great pictures of what to expect when receiving a nerve block. The first picture is a CT guided photo showing the optimum placement of the needle in this particular person.





    Here is what one of the PNE experts says about nerve blocks:

    "Most of the time in fact the compression of the nerve trunk is at the level of the claw between the sacro spinal and the sacro tuberal ligaments. That is why I don't like to call this syndrome the Alcock syndrome, as far as mainly the compression is more important outside of the canal. Of course the Alcock tunnel syndrome does exist. That is why, according to the medical findings we start by blocks at the level of the claw. If it doesn't work then we do the second block in the tunnel. The block at the level of the claw is done under fluoroscopy. The other one is scan guided under CT view. Two blocks can be done at each level on one or both sides but no more."

    "The second reason is that blocks constitute a very important diagnostic test. If they don't work at all we can suspect a bad diagnosis. If they do well for a while (several days or weeks) they must be done another time. The surgical indications arise from the failure of those blocks with time. The main problem arises for patients without any effect after blocks. I do believe that then they are not candidates for surgery. A block which may lead to disparition of pain during some hours is nevertheless a good diagnostic test for us and may lead to surgery. So, the guideline could be as follow: Blocks at the two levels without any efficacy = bad diagnosis. Blocks at one or two levels with "long improvement" (some days or weeks ) = try one block again at the two levels. If it doesn't work = surgery with very high hopes. Blocks with very short amelioration = surgery.”
    14. What is the Pudendal Nerve Motor Latency Test (PNMLT)?

    The full name is the pudendal nerve distal motor latency test. As the "Consensus Statement of Definitions for Anorectal Physiology and Rectal Cancer" for the United States defines it:

    "Pudendal nerve latency is the measurement of the time from stimulation of the pudendal nerve at the ischial spine to the response of the external anal sphincter. Normal pudendal nerve terminal motor latency is <2.2 ms."

    This means the normal response time should be 2.2 milliseconds or less. Other points besides the ischial spine can be used for the test, which will cause a different response time. Dr. Robert's approach uses several different points. The most common has a normal latency of 4.0 ms or less. As an example of PNMLT scores one patient’s results at Dr. Robert's hospital were 4.7 ms left and 7.8 ms right.

    Anything over the normal latency time means the nerve is not operating normally and is therefore probably damaged leading to motor dysfunction of the nerve. The pudendal nerve is found in the pelvis. Right and left branches of this nerve extend to the bladder and bowel sphincter muscles. When the nerves and muscles perform normally, we have control of bladder and bowel functions without discomfort. A problem with pudendal nerve function may lead to loss of control of the anal sphincter muscles. Such problems may cause leakage of urine or stool, conditions referred to as urinary incontinence and bowel incontinence. Problems with pudendal nerve and sphincter function may also cause chronic constipation or rectal pain.

    The PNMLT does not measure the sensory function of the nerve but only measures the motor function of the nerve. So PNMLT scores do not necessarily correspond to pain levels. A recent publication reports that the PNMLT is not a good indicator of whether you have an entrapment but it may indicate a neuropathy.

    Description of the PNMLT

    The most widely used method of electrophysiological testing of pudendal nerve function is that described by Kiff and Swash at St. Mark’s Hospital in London. They used a rubber finger stall that has two stimulating electrodes at the tip and two surface electrodes for recording mounted three cm. proximally at its base. The index finger, mounted with the device, is inserted into the rectum and placed on the ischial spine. Electrical stimulation is then initiated and the latency of the response to the anal sphincter is recorded on surface or needle electrodes. The normal mean terminal latency is 2.0 +or – 0.3 msec. It must be pointed out that the pudendal nerve terminal motor latency test (PNTML) is solely a motor study, and is of importance only if the study is abnormal. In other words, the sensory nerve fiber component of the nerve more peripherally located can be compromised without involving the motor fibers. This anatomical situation can result in a patient with sensory fiber compression and pain having a negative PNTML test. In addition the test does not indicate the extent of injury or entrapment, but only if the nerve is responding abnormally. A comprehensive examination should include sensory nerve tests; as well as testing of the components of motor function, and EMG of the pelvic floor. With this information one could ascertain the severity of the damage i.e., if there is axonal damage or focal demyelization, determined by the motor amplitude and EMG characteristics; if the process is of recent or longstanding; and if there is an attempt to regenerate (needle EMG). Dr. Benson has developed a sensory testing method, based on the bulbo/clitorocavernosus reflex, in which a mild stimulus is applied to the glans penis or adjacent to the clitoris and the reflex conduction time to the pelvic floor muscle is measured. Source



    PROCEDURE : You will be asked to undress from the waist down, and wear a patient gown with the opening in the back. A technologist trained in performing this exam will be conducting the test, and will explain everything he or she is going to do. You will be asked to lie on a stretcher, turn to your left side, and bend your knees. An electrode pad (similar to an EKG pad) will be placed on your buttock or thigh. The technician will then put on a rubber glove with an electrode on the index finger. After lubricating his index finger, he will gently insert it into your rectum. This should be no more uncomfortable for you than a rectal exam. The technologist will then send a mild, painless electrical stimulus through the electrode on his finger to your pudendal nerve. This stimulation may cause the muscles of your thigh to twitch involuntarily, but it will be painless. The technologist will then gently rotate his finger to repeat the test on the opposite branch of the nerve. A computer will record the response of your pudendal nerve to the stimulation. A physician will interpret the results and determine if any nerve conduction delays exist. The actual procedure will take 15-20 minutes.



    This is a picture of the St. Marks electrode that is used, to conduct the PNMLT.
    15. What other electrophysiological tests are used to diagnose PN/PNE?

    Some pudendal nerve physicians perform electrophysiological tests such as the sacral reflex test, cortical evoked potential test, and somatosensory evoked potential (SSEP) to test whether there is a problem in signals from the spinal cord and brain or in the motor responses of the pelvic floor . These tests usually require the use of electrodes or tiny needles inserted in muscles in the perineal area or in the forehead and small bursts of electrical stimulation. The tests can be slightly painful but do not last very long.

    “An SSEP indicates whether the spinal cord or nerves are being pinched. It is helpful in determining how much the nerve is being damaged and if there is a bone spur, herniated disc, or other source of pressure on the spinal cord or nerve roots.”(source)

    Sacral reflex testing tests the motor response of muscles in the pelvic floor.

    “Sacral reflexes consist of motor responses in the pelvic floor and sphincter muscles evoked by stimulation of sensory receptors in pelvic skin, anus, rectum, or pelvic viscera. These responses may be elicited by physical or electrical stimuli.”(source)

    One publication looks at the differences between the some of the more commonly used nerve testing.

    The EMG - Which One and Why

    Eric DeBisschop - Eric Bautrant

    They look at "staged" sacral reflexes vs the Pudendal Nerve Motor Latency test. Many factors can interfere with nerve testing results. Examine with your doctor the pros and cons of using these tests.
    16. Where is the pudendal nerve and what does it look like?

    Some of the best anatomical images are the Female Pudendal Nerve or Male Pudendal Nerve. Study these images. Note the way the nerve branches out and covers a wide area. Is your pain located anywhere on the nerves shown? If so, and it gets worse with normal sitting and better sitting on a toilet seat, and there is no apparent reason for the pain, you may have PNE.

    Note how prominently the nerves stand out on the ischial spine. This is why prolonged sitting (especially heavy cycling) so frequently causes PNE. As Dr. Robert writes in his article, the pudendal nerve "describes a curve which drags it around the region of the ischial spine, which it straddles like a violin string on its bridge."

    Print the male or female image in normal or best mode, and in color. Circle the areas where your pain is. Now, what nerves are in those areas? Discuss this image with your doctor.

    When you visit your doctor, ask to see and discuss additional images of the pudendal nerve.

    What does the pudendal nerve look like? The image on the right is Figure 11 from PNE by Dr. Robert. This photograph was taken after the surgical procedure that frees the pudendal nerve from entrapment by incisions on the sacrotuberal and sacrospinal ligaments, as discussed in the article.

    An interesting image of the cutaneous nerve is at the Gluteal Region. This is especially useful for those who do not have the classic PNE symptoms, but have sitting related pain in the ischial area and between the two ischial tuberosities.
    17. Why does it take so long to feel better after surgery?

    Patients are advised that it will be two to six weeks before they can return to work, depending out the physician and which type of surgery you had. This is just the surgery recovery period. For the pudendal nerve to return to its original normal pain-free condition usually takes much longer, generally several months to a year. However, some patients have felt huge reductions in pain as soon as they woke up after the operation.

    Dr. Robert advises that a final assessment of the outcome of the surgery cannot be made until one year afterwards. He cautions that you should expect no improvement for the first three months and that most improvement occurs in the 3 to 12 months following surgery.

    Some people have continued to see improvements in pain levels as long as 3 years after surgery. One reason for this is that nerves regenerate more slowly than many other tissues.

    As Chris R explained:

    "There are several reasons the nerve takes so long to get rid of the painful sensations:

    "1. It takes a while to decrease the inflammation from the surgery.

    "2. The damaged nerve has A LOT more receptors than a normal nerve making it A LOT more sensitive meaning it will conduct an impulse at a lower threshold. (hyperalgesia/allodynia) It takes a long time for these receptors to be down regulated. Taking 25mg of Elavil before going to bed every night is thought to block some receptors and speed up the process. I think it helps quite a bit. It can cause some constipation, though, so use some citrucel, etc if you use Elavil.

    "3. The pain has been there a long time and the pathway is 'grooved' --- it is called central nervous system plasticity. This is also thought to be helped some by low doses of Elavil. But most importantly, it takes A LOT of time."

    18. How can I learn more about PNE?

    For further information see pudendal.info, www.spuninfo.org, or www.pudendal.com. There is a great discussion forum at pudendal.info.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  3. #3
    ICN Member Kara29's Avatar
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    Diagnosis

    DIAGNOSIS


    Diagnosis

    The sacrum, by virtue of its anatomic location, is a structure that presents itself to the attention of multiple medical specialists. This is why many people with chronic pelvic pain will visit many gynecologists, urologists, imaging specialists, gastroenterologists, neurologists and pain specialists before finding the correct diagnoses.

    Pudendal neuralgia is a rare condition, and it is seldom diagnosed correctly in a short period of time. Sadly, many people with pudendal neuralgia (PN) -- also known as “pudendal neuropathy” or “pudendal nerve entrapment” (PNE) -- are still searching for answers within the medical system. Many are being misdiagnosed over and over, some even having inappropriate and unnecessary surgeries. Additionally, many are being labeled by doctors who cannot figure out what is wrong with them as “head cases” and are sent off to psychiatrists.

    This page is aimed at giving you a roadmap for a pudendal neuralgia diagnosis. The predominant factor in the diagnosis of pudendal neuralgia is the symptoms.
    How is PN correctly diagnosed?

    Correct diagnosis follows these main stages:

    A. The exam.

    For guys the exam should include digital rectal exam. For ladies the exam should include a pelvic exam.

    What is your history? Were you exercising heavily, did you have an accident, pelvic surgery, vaginal delivery, or were you sitting long hours? Is your pain in the distribution area innervated by the pudendal nerve? Is there increased pain or tenderness when your doctor presses along the course of the nerve via the rectum or vagina? The most constant element is a replication or worsening of the pain during a rectal/vaginal touch at the ischial spine area. This touch must be done by the end of the finger on the postero-lateral wall of the rectum for men or the side of the vagina for women at the ischial spine and alcock’s canal.

    Very often there are other painful areas in the surrounding region such as the piriformis muscle or tailbone pain. Most of the time this is a reaction to the nerve pain but in some cases the piriformis muscle could pinch the nerve and be the main cause.

    B. Elimination of other factors.

    It is important to rule out other problems such as urinary tract infections, prostate infections, vaginal infections, or sexually transmitted diseases. If the pain persists after the conventional medications to treat these illnesses are tried then the next steps in the diagnosis of pudendal neuralgia can be pursued. Disorders that might cause peripheral neuropathy such as Lyme’s disease or multiple sclerosis should also be ruled out. You should have a stool examination for possible blood. (Screen for colorectal cancer and other problems.) Guys should have a PSA.

    C. Magnetic resonance imaging ( MRI), CT scan, and magnetic resonance neurography.

    Often the pudendal nerve expert doctors recommend an MRI to rule out obvious problems such as tumors or spinal abnormalities. MRI’s and CT scans cannot see the nerves. But they are important to exclude any other organic lesions or to find other causes of nerve compressions especially at the level of the spine. Many other conditions like cauda equina syndrome and arachnoiditis have some symptoms that mimic PN. One should have at least a CT scan or MRI of the lumbosacral area and lumbosacral plexus. Often with pudendal neuralgia, CT scan and MRI exams will show no irregularities. The PNE doctors each have their own protocol so while it is OK to have these tests locally, before scheduling your MRI it is good to check with the PNE doctor you may eventually wish to see so that you know exactly what type of MRI they require. This can help you avoid having an MRI twice.

    Magnetic resonance neurography (MRN) is similar to an MRI but it uses special software to enhance the image of small nerves that are difficult to see on a normal MRI. There are only a handful of centers in the world where you can have this test and entrapments do not always show up so the test is only accurate for a diagnosis of PNE part of the time.

    D. Pelvic floor physical therapy that includes myofascial release.

    If your doctor decides your problem might be PN often they will refer you to a physical therapist for pelvic floor physical therapy. It is difficult to distinguish between pudendal nerve entrapment (PNE) and pelvic floor dysfunction (PFD) because typically PNE can cause PFD and the symptoms can be similar. A course of pelvic floor physical therapy can help to determine if you just have PFD. People with PNE are less likely to have good results from pelvic floor physical therapy.

    When choosing a pelvic floor physical therapist it is important to make sure you receive the correct type of PT. Typically the pelvic floor muscles are overly tense (contracted) and they need help to relax (lengthen). For this reason pelvic floor strengthening exercises such as Kegals are not recommended for people with PN. Myofascial release and trigger point therapy are recommended to retrain the muscles to relax.

    E. Electro physiological testing including EMG’s and PNMLT.

    A PNMLT is an electro physiological procedure, similar to an EMG (electromyogram), which measures the speed of nerve conduction. This exam is done by a neurologist. Not all neurologists have the necessary equipment to do this type of examination on the pudendal nerve. During this exam, the pudendal nerve is stimulated electrically inside the rectum (or vagina) at the ischial spine with electrodes on the tip of a special glove. The speed of the nerve conduction is recorded by a small needle inserted in the perineum. If the nerve responds slower than normal, this gives an indication that the nerve may be entrapped or damaged.

    The PNMLT examines only the motor function of the nerve. There is no way to test the sensory fibers of the nerve which transmit pain. The reason for the test is based on the assertion that an abnormal motor function will most likely conceal a sensory affection as well but this is not always true. So, an abnormal PNMLT indicates that the pudendal nerve is affected but a normal reading does not rule out PN. In this case a sensory neuropathy could exist even if the motor fiber of the nerve has not been affected yet. This is more common with people who have had PN only for a short period of time.

    The neurological examination can be completed by the measurement of the anal reflex latency, measurements of the bulbocavernosus reflex latencies (BCRLs), somatosensory evoked potentials of the pudendal nerve (SEPPNs) and the sensory conduction velocity of the dorsal nerve of the penis (SCVDNP). Those exams can give further information about the condition of the nerve or the origin of the pain.

    Results of these tests are not 100% accurate for a diagnosis of pudendal neuralgia or PNE but they can help add to the overall picture as to how well the nerve is functioning. Sometimes, although not always, there will be a latency with the EMG and PNMLT testing that indicates a neuropathy. There are some doctors who rely mostly on the PNMLT and there are others who rely mostly on the EMG. Some doctors feel that utilizing the EMG, they can actually "tell" where the entrapment is.

    More about the PNMLT

    The full name is the pudendal nerve distal motor latency test. As the "Consensus Statement of Definitions for Anorectal Physiology and Rectal Cancer" for the United States defines it:

    "Pudendal nerve latency is the measurement of the time from stimulation of the pudendal nerve at the ischial spine to the response of the external anal sphincter. Normal pudendal nerve terminal motor latency is <2.2 ms."

    This means the normal response time should be 2.2 milliseconds or less. Other points besides the ischial spine can be used for the test, which will cause a different response time. Dr. Robert's approach uses several different points. The most common has a normal latency of 4.0 ms or less. As an example of PNMLT scores one patient’s results at Dr. Robert's hospital were 4.7 ms left and 7.8 ms right.

    Anything over the normal latency time means the nerve is not operating normally and is therefore probably damaged leading to motor dysfunction of the nerve. The pudendal nerve is found in the pelvis. Right and left branches of this nerve extend to the bladder and bowel sphincter muscles. When the nerves and muscles perform normally, we have control of bladder and bowel functions without discomfort. A problem with pudendal nerve function may lead to loss of control of the anal sphincter muscles. Such problems may cause leakage of urine or stool, conditions referred to as urinary incontinence and bowel incontinence. Problems with pudendal nerve and sphincter function may also cause chronic constipation or rectal pain.

    The PNMLT does not measure the sensory function of the nerve but only measures the motor function of the nerve. So PNMLT scores do not necessarily correspond to pain levels. A recent publication reports that the PNMLT is not a good indicator of whether you have an entrapment but it may indicate a neuropathy.

    Description of the PNMLT

    The most widely used method of electro physiological testing of pudendal nerve function is that described by Kiff and Swash at St. Mark’s Hospital in London. They used a rubber finger stall that has two stimulating electrodes at the tip and two surface electrodes for recording mounted three cm. proximally at its base. The index finger, mounted with the device, is inserted into the rectum and placed on the ischial spine. Electrical stimulation is then initiated and the latency of the response to the anal sphincter is recorded on surface or needle electrodes. The normal mean terminal latency is 2.0 +or – 0.3 msec. It must be pointed out that the pudendal nerve terminal motor latency test (PNTML) is solely a motor study, and is of importance only if the study is abnormal. In other words, the sensory nerve fiber component of the nerve more peripherally located can be compromised without involving the motor fibers. This anatomical situation can result in a patient with sensory fiber compression and pain having a negative PNTML test. In addition the test does not indicate the extent of injury or entrapment, but only if the nerve is responding abnormally. A comprehensive examination should include sensory nerve tests; as well as testing of the components of motor function, and EMG of the pelvic floor. With this information one could ascertain the severity of the damage i.e., if there is axonal damage or focal demyelization, determined by the motor amplitude and EMG characteristics; if the process is of recent or longstanding; and if there is an attempt to regenerate (needle EMG). Dr. Benson has developed a sensory testing method, based on the bulbo/clitorocavernosus reflex, in which a mild stimulus is applied to the glans penis or adjacent to the clitoris and the reflex conduction time to the pelvic floor muscle is measured. Source



    PROCEDURE : You will be asked to undress from the waist down, and wear a patient gown with the opening in the back. A technologist trained in performing this exam will be conducting the test, and will explain everything he or she is going to do. You will be asked to lie on a stretcher, turn to your left side, and bend your knees. An electrode pad (similar to an EKG pad) will be placed on your buttock or thigh. The technician will then put on a rubber glove with an electrode on the index finger. After lubricating his index finger, he will gently insert it into your rectum. This should be no more uncomfortable for you than a rectal exam. The technologist will then send a mild, electrical stimulus through the electrode on his finger to your pudendal nerve. This stimulation may cause the muscles of your thigh to twitch involuntarily. The technologist will then gently rotate his finger to repeat the test on the opposite branch of the nerve. A computer will record the response of your pudendal nerve to the stimulation. A physician will interpret the results and determine if any nerve conduction delays exist. The actual procedure will take 15-20 minutes.



    This is a picture of the St. Marks electrode that is used to conduct the PNMLT.

    More about other electro physiological tests

    Some pudendal nerve physicians perform electro physiological tests such as the sacral reflex test, cortical evoked potential test, and somatosensory evoked potential (SSEP) to test whether there is a problem in signals from the spinal cord and brain or in the motor responses of the pelvic floor . These tests usually require the use of electrodes or tiny needles inserted in muscles in the perineal area or in the forehead and small bursts of electrical stimulation. The tests can be slightly painful but do not last very long.

    “An SSEP indicates whether the spinal cord or nerves are being pinched. It is helpful in determining how much the nerve is being damaged and if there is a bone spur, herniated disc, or other source of pressure on the spinal cord or nerve roots.”(source)

    Sacral reflex testing tests the motor response of muscles in the pelvic floor.

    “Sacral reflexes consist of motor responses in the pelvic floor and sphincter muscles evoked by stimulation of sensory receptors in pelvic skin, anus, rectum, or pelvic viscera. These responses may be elicited by physical or electrical stimuli.”(source)

    One publication looks at the differences between the some of the more commonly used nerve tests.

    The EMG - Which One and Why

    Eric DeBisschop - Eric Bautrant

    They look at "staged" sacral reflexes vs the Pudendal Nerve Motor Latency test. Many factors can interfere with nerve testing results. Examine with your doctor the pros and cons of using these tests.

    F. Pudendal nerve blocks.

    A diagnostic block, or a "blockage of the nerve", is an injection with a local anesthetic such as lidocaine or one of its derivatives (also used by dentists). The block is usually done in the buttock to reach the pudendal nerve at the ischial spine where it is most often entrapped between the sacrospinous and sacrotuberous ligaments. One block for each side affected is necessary. If the pain diminishes immediately or even vanishes completely as long as the effect of the local anesthetic persists, this is an indication that your pudendal nerve may be compromised in some fashion, and that possibly some damage to the nerve has occurred.

    Injections can serve as a diagnostic tool but can also serve as a therapeutic tool. In the latter case, the injection consists of a steroid as well as an anesthetic agent.

    If you experience significant pain relief for even a short time (several hours) from a nerve block that may mean you have pudendal neuralgia. However pudendal nerve blocks can temporarily ease the pain caused by other problems in the distribution area of the pudendal nerve so the nerve block is only one of the tools used in the diagnosis of PN.

    In the context of PN, a nerve block involves injecting a liquid at a precise location near a nerve. For a small nerve like the pudendal that takes slightly different paths in different people, this requires more than just studying a person's body and deciding where to insert the needle, at what angle, and how deep. It requires imaging of some type, such as X-ray (fluoroscope), ultrasound, MRI or CT. Without the accuracy these imaging systems provide, it is difficult or impossible to know if the needle tip is located correctly. If incorrectly located, the nerve can be damaged or the injected liquid will be too far away to have its intended effect. Dr. Bensignor says the needle tip must be within one millimeter of the target. However, even with image guidance it is possible for the block to miss its mark.

    There are two main types of injected liquids: a local anesthetic and slow-release steroids. The local is a short term diagnostic tool. If the pain goes away and stays gone for the short term, the location was correct and the nerve can be suspected of being a contributor or the sole source of pain. The steroids are a long term therapeutic attempt. In some cases they will cause the nerve, if it is irritated, to get better. This can take days or weeks, and improvement may be temporary or permanent. This delay explains why physicians prefer a delay of several weeks between nerve blocks with steroids. If the nerve is not irritated, the steroids have no effect. Some doctors use heparin, an anti-inflammatory medication, instead of steroids.

    Two main locations are used. The ischial spine block is done by injecting into the sacrospinous ligament. Alcock's canal block is done by injecting into the sacrotuberous ligament. These are not the same as the blocks carried out for childbirth pain. In some cases the blocks may worsen the pain a little but this should last only a few weeks. In a few cases nerve blocks have caused a permanent worsening of pain possibly due to the nerve being “nicked” by the needle, a reaction to the medication, or formation of scar tissue.

    When the nerve block is conducted under guidance, the patient is asked to lie down in the prone position. Using a small needle the doctor injects an anesthetic to numb the buttocks prior to injecting with the larger needle that targets the pudendal nerve. When the doctor is able to find the pudendal nerve, he will then inject either the local anesthetic and the long term steroid or heparin. The procedure itself lasts approximately 30 minutes. This is done on an outpatient basis. No overnight stay is required.

    If the injection relieves your pain that is considered a positive response to the nerve block and the pudendal nerve may be the source of your pain. If the injection did not provide any relief there are two possible conclusions.

    1. The pain is not as a result of the pudendal nerve or

    2. The physician did not get close enough to the pudendal nerve to feel any effects.

    After a pudendal nerve block it is possible to evaluate whether the block hit the target of the pudendal nerve by testing the perineum, clitoral, and anal areas for loss of sensation and numbness. Sometimes the physician might order another block four to six weeks after your first block, to make sure that they can entirely rule out pudendal neuralgia, by trying to see if they can get close enough to the nerve again.

    Occasionally medication from the nerve block can wander into the area of the sciatic nerve making it difficult for the patient to walk. This problem typically subsides within 24 hours.

    Pudendal neuralgia: CT guided pudendal nerve block technique - This highly technical 1999 article describes the anatomy involved and how to perform nerve blocks. As the article says, "Infiltrations are made first at the ischial spine. If two consecutive nerve blocks into the ischial spine fail, a third injection can be made into the pudendal canal.”

    Below are some great pictures of what to expect when receiving a nerve block. The first picture is a CT guided photo showing the optimum placement of the needle in this particular person.





    Here is what one of the PNE experts says about nerve blocks:

    "Most of the time in fact the compression of the nerve trunk is at the level of the claw between the sacro spinal and the sacro tuberal ligaments. That is why I don't like to call this syndrome the Alcock syndrome, as far as mainly the compression is more important outside of the canal. Of course the Alcock tunnel syndrome does exist. That is why, according to the medical findings we start by blocks at the level of the claw. If it doesn't work then we do the second block in the tunnel. The block at the level of the claw is done under fluoroscopy. The other one is scan guided under CT view. Two blocks can be done at each level on one or both sides but no more."

    "The second reason is that blocks constitute a very important diagnostic test. If they don't work at all we can suspect a bad diagnosis. If they do well for a while (several days or weeks) they must be done another time. The surgical indications arise from the failure of those blocks with time. The main problem arises for patients without any effect after blocks. I do believe that then they are not candidates for surgery. A block which may lead to disparition of pain during some hours is nevertheless a good diagnostic test for us and may lead to surgery. So, the guideline could be as follow: Blocks at the two levels without any efficacy = bad diagnosis. Blocks at one or two levels with "long improvement" (some days or weeks ) = try one block again at the two levels. If it doesn't work = surgery with very high hopes. Blocks with very short amelioration = surgery.”

    In Conclusion

    None of the diagnostic tests for PN and PNE are 100% accurate so the more of these tests you have the better your overall picture will be in determining your diagnosis.

    The final diagnosis of pudendal neuralgia is based on a person having several or all of these criteria:

    1. Typical PNE symptoms
    2. An abnormal electro physiological test
    3. A positive response to the nerve block
    4. A distinct abnormality on an MRN
    5. Pain elicited upon pressing along the course of the nerve
    6. Elimination of other diseases being the cause
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  4. #4
    ICN Member Kara29's Avatar
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    Lifestyle Changes

    Lifestyle Changes



    When dealing with lifestyle changes, you need to look at it as permanent lifestyle changes and not just temporary lifestyle changes. Having nerve damage is very different than breaking a body part, which eventually gets better. Once the nerve is inflammed and / or entrapped, you need to take care of it for the rest of your life, to avoid further damage to the nerve.

    This is the one thing that you should start doing first and immediately. Sometimes people with pudendal neuralgia, can avoid further testing, medications etc. with lifestyle changes alone. Change can be extremely hard, especially if you are used to doing something for a long period of time. This particular change though, is necessary for a good outcome. There are people with pudendal neuralgia that have done extremely well with lifestyle changes alone.

    All of this information may be a bit scary for a new comer. There will be alot of questions that you may have. How do I continue to work if I cannot sit? How do I get my daily exercise without damaging the pudendal nerve further? As you begin to read you will begin to see the changes that may be necessary to make your pain better. When you first start out making changes, don't be hard on yourself, if you find yourself doing something that you normally do, like sitting. These changes will take time to accomplish. If you catch yourself sitting when you don't need to, just keep a mental note to yourself and change your position so that you are no longer sitting. I think that one of the hardest things is to give up something that you love to do, in hopes of keeping the nerve from being further damaged. There are some PN'ers that have given up cycling, motorcycling and other things that they used to do. This will probably be one of the hardest choices you will encounter. Each choice will be an individual choice. This information that we are providing is for the maximum benefit of trying to help heal a damaged nerve. Some people with PN can do some cycling on a limited basis, while others cannot. You will need to pick and choose what you are willing to give up for optimum pain relief. It is my own personal thought that nothing is worth severe pain and if something can be given up, it probably should be given up. Each one of you though will have to decide on your own, your own pain levels and how much you are willing to risk.

    As time goes on, you will be amazed at what you CAN do, even with the limitations you may have with chronic pain. It has always astounded me, the way that people will get around when they need to with this condition. For example, I myself have found ways to play with my young son. I play with him mostly on the floor, so that I do not have to sit. I have found ways to fold clothes, which may be laying down on the bed, so that I do not have to bend. I have found ways to put laundry in the washing machine, by kneeling, so that I do not have to bend. I have found numerous ways of doing numerous things, without hurting the nerve already more than it already has been. You too, will be amazed at how much you can do, when you start working on and begin to change some of the ways that you used to do things. Some PN'ers have gone to the hairdresser and have stood up or kneeled on the floor to get their haircut. These are all real examples from real people in pain. I hope that you find this information useful in the beginning of your journey in making sifnificant lifestyle changes that may help to minimize any further damage to your already damaged nerve.

    Here are some great pieces of information that may be useful in making the necessary lifestyle changes. Above all, sitting should be the completely avoided at all possible times.
    Here is a list of things to avoid:
    1. Sitting/ Bending
    2. Constipation
    3. Certain Exercises
    4. Biking

    Here is a list of things that are OK to do with PN.

    1. Walking
    2. Swimming
    3. Upper Body Exercises
    4. Gliding Exercises
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  5. #5
    ICN Member Kara29's Avatar
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    Medications

    MEDICATIONS and MED MANGEMENT

    Medication Management

    Medication Treatment Options for those with Pudendal Neuralgia



    When starting a new medication, it is important to have close contact with your doctor. There are no comprehensive studies on utilizing these medications with pudendal neuralgia. Most neuropathic pain studies are conducted on those with diabetic neuropathies, trigeminal neuralgia and other neuropathies like post herpetic neuralgia. While some medications may work better with certain types of neuropathy, some facts are included here about how each of these medications have helped or not helped those suffering from various neuropathies.
    About Pain:

    Pain is one of the most common reasons that peoplet seek medical care. An estimated 50 million people suffer from chronic nonmalignant pain, or pain of greater than 3 months' duration that is not related to cancer. Pain results in a staggering 40 million physician office visits per year, accompanied by approximately 4 billion lost work days, $65 billion in lost work productivity and $3 billion in over-the-counter analgesics. Above all, it results in a dramatically decreased quality of life for the person whom experiences it. In a Gallop Poll, 69% of cancer patients stated they would consider suicide if they felt their pain was inadequately controlled.

    Optimizing pain relief is crucial to helping a person regain control of his or her life.



    Pathology of Neuropathic Pain

    .According to the "gate control" pain theory, injury to peripheral nerves or nerves descending from the spinal cord results in disinhibition of the nerve's impulses at the spinal cord "gate," which results in pain. Mechanosensitivity, spontaneous activity and increased responsiveness to both beta-adrenergic agonists and sympathetic chain stimulation also contribute to the pain.


    Medications can also result in neuropathies, sometimes with associated pain. Isoniazid and hydralazine induce neuropathy by depleting pyridoxine. Ironically, megadoses of pyridoxine also cause neuropathy. Other medications have reversible dose-related effects. These include amiodarone, statins, dapsone, nucleoside analogs, paclitaxel and vincristine. A dose-dependent neuropathy is associated with cisplatin, but may not resolve and possibly worsen with drug discontinuation.

    Signs and Symptoms

    Several features of neuropathy distinguish it from other types of pain. Pain is delayed in onset after the injury occurs. People often describe their pain as "electrical" or "burning." Other descriptors include feelings of extreme cold, "like frostbite," despite an absence of temperature changes upon physical exam. Sometimes people can experience numbness, tingling, or "needles and pins" sensations. Pain descriptors vary between people. PN sufferers report that their pain is worse in the evening and better during the morning. Most can't wear tight clothing and opt to wear loose fitting clothing.


    Pudendal neuralgia involves signs of sensory dysfunction on physical examination. There may be motor dysfunction as well, such as urinary or fecal incontinence. Pudendal neuralgia sufferers can also often develop secondary myofascial pain.

    Certain physical examination techniques help to identify abnormal sensory perceptions. People may have allodynia, a painful response to a typically nonpainful stimulus. Allodynia is elicited by brushing the affected area with a fingertip or cotton swab, or by thermal stimulation with a cold or warm object. Patients sometimes experience hyperpathia, an exaggerated pain response to a minor painful response, such as pinpricks. The pain tends to increase with repeated exposure, may spread outside of the contacted area (summation), and may include painful after-sensations.

    Pudendal Neuralgia clearly can impact a person's ability to carry out his or her activities through out the day.. Increased pain during the night interferes with sleep. A person may find themselves guarding the areas that hurt the most, limit social activities, or develop depression. Pain relief is important to improve tthe persons quality of life.

    What to Expect

    While the first goal of therapy is to relieve pain, goals should be realistic. People often hope for a "cure," but this is not always possible.. A more realistic goal is to decrease pain to a tolerable level. Successful treatment should improve your ability to take care of yourself, to do daily chores around the house and to be able to socialize with friends and family.



    Non Medication Management


    Some non medication management techniques include lifestyle changes, physical therapy, occupational therapy, cold laser therapy, radio frequency ablation, different types of nerve blocks ie..PN block, Ganglion Impar block, biofeedback, relaxation therapy, meditation, acupuncture and hypnosis. Some people with pudendal neuralgia have also started using herbal treatments, with some success. It's very important that you speak with your doctor first, before starting a herbal program, to make sure that there are no interactions with your current medication.


    Medication Management

    Medication can be extremely helpful for treating Pudendal neuralgia.. Medication from several different drug classes are used to treat neuropathic pain, including topical agents, tricyclic antidepressants, SSRI's, anticonvulsants, and nonopioid analgesics. The common underlying mechanism of action is reduction of neuronal hyperexcitability, either peripherally or centrally. In a sense, the nerve impulses are blunted.. Clinical trials give some guidance on agent selection, but they do not predict which agent will relieve an individuals pain. There may be some trial and error in trying different medications. What may work for one person, may not work for another. There may be different medications tried, before finding the right combination that works optimally in treating the pain.



    Topical Agents: Topical agents offer the advantage of local relief without systemic toxicity. Capsaicin cream, which contains an extract of chili peppers, is sometimes used to treat neuropathic pain. It may act on unmyelinated primary afferent nerves by depleting substance P, a peptide thought to be involved in pain transmission. Depletion requires repeated and consistent use of capsaicin. The most common side effect is a burning sensation that decreases with consistent use.. Lidocaine is also used topically, it comes in two forms, one is a cream form and the other is a patch form. Some people have seen relief with this. There are also compounding agents that your doctor can prescribe. Some people with pudendal neuralgia have used Belladona & Opium suppositories, valium suppositories and a multitude of other compounding agents that may help topically, like a Neurontin cream. Your doctor may be able to help you find the right topical agent that helps provide the maximum relief.

    Antidepressants: Both tricyclic antidepressants and serotonin reuptake inhibitors are used to treat pudendal neuralgia. Tricyclic antidepressants (TCAs) are often used.. Numerous clinical trials demonstrate the safety and efficacy of TCAs.. Amitriptyline was the first tricyclic used to treat neuropathy, and it is still widely prescribed. Amitriptyline also has a high incidence of anticholinergic side effects. This can lead to delirium in elderly persons and should be avoided in that population. Desipramine and nortriptyline, which have the least anticholinergic activity of the TCAs, are equally efficacious substitutes. The pain-relieving properties of TCAs occur independently of their effect on mood.

    Some of the side effects of TCAs have proarrhythmic effects. Anyone taking this medication should have a baseline ECG, with a repeat after achieving a therapeutic dose. The greatest risk for developing arrhythmias occurs as the medication dose goes higher. For desipramine, anything over 70mg, an ECG should be ordered.. Other risk factors include congestive heart failure, active ischemic heart disease, and bundle branch block. TCAs should also be avoided in people with closed-angle glaucoma, benign prostatic hypertrophy, uncontrolled seizure disorder, and bipolar disorder.

    Serotonin specific reuptake inhibitors (SSRIs) have less consistent effects on people with pudendal neuralgia, although some have had great success with it. Again, it can be some trial and error in finding the right medication.. Some of the typical SSRI's are Paxil, Zoloft, Lexapro, Celexa and Prozac.

    The last type of antidepressant is called an SSNRI. This would include medications like Cymbalta and Effexor, with Cymbalta being widely used to treat pudendal neuralgia symptoms. They both combine the norepinephrine-reuptake inhibiting effects of TCAs with the serotonin-reuptake inhibiting effects of the SSRIs, without the anticholinergic side effects.. It appears that serotonin reuptake inhibitors combined with norepinephrine reuptake inhibitors have a better effect on those suffering with pudendal neuralgia. Cymbalta is a newer form of antidepressant, which is now FDA approved to treat neuropathic pain. The side effects can include increased blood pressure and/or hypertension, irritability, insomnia, nausea, vomiting and constipation.



    Anticonvulsants: Anticonvulsants are considered second-line therapy for most neuropathies. Carbamazepine (Tegretol), phenytoin (Dilantin), gabapentin (Neurontin), lamotrigine (Lamictal) and Lyrica are all used to treat neuropathic pain. The ones most widely utilized for pudendal neuralgia are Lyrica and Neurontin.

    Lyrica - Lyrica is now being used to treat Pudendal Neuralgia. It is FDA approved to treat neuropathic pain. There are some studies showing that the combination of Lyrica and Cymbalta have given some pudendal neuralgia sufferers greater relief than utilizing any one of them alone.


    Carbamazepine: Carbamazepine is considered first-line therapy for trigeminal neuralgia. Clinical trials suggest its efficacy for treating diabetic neuropathy, but results are mixed for postherpetic neuralgia.
    The most common side effects of carbamazepine are dizziness, giddiness and dyspepsia. These symptoms are dose-related, and can be minimized by starting with low doses. Carbamazepine carries a black box warning for blood dyscrasias, including agranulocytosis and aplastic anemia. Both of these side effects are idiosyncratic.


    Gabapentin: Until recently, evidence for treating neuropathies with gabapentin was based on anecdotal information or case studies. However, objective evidence from randomized, double-blind trials is available. Gabapentin is more effective than placebo at reducing diabetic neuropathy and postherpetic neuralgia-associated pain. The most common side effects associated with gabapentin are asthenia, headache, dizziness and somnolence. Ironically, gabapentin has been reported to induce polyneuropathy.


    Lamotrigine: Lamotrigine shows promise for decreasing pain associated with trigeminal neuralgia. However, it was no better than placebo when used to treat other types of neuropathic pain. The side effect of most concern is skin rash, including Steven-Johnson's syndrome. To avoid this, therapy should be initiated with low doses and titrated slowly to a therapeutic dose.


    Analgesics: Opioid treatment of neuropathic pain has been controversial over the past 10-15 years. Opioids were thought to be ineffective for treating neuropathic pain, but evidence is mounting for the use of opioids in patients who have failed other modalities. In addition, novel analgesics such as tramadol may offer new options in treating neuropathies.


    NSAIDs: Neuropathic pain relief from NSAIDs has varied widely with the type of neuropathy and agent used. In particular, with pudendal neuralgia, if their is an inflammation of the nerve, utilizing medications like Ibuprofen may be of help.


    Tramadol: Interest in tramadol for treating neuropathic pain stems from its inhibition of norepinephrine reuptake and release of serotonin, similar to the tricyclic antidepressants. Its active metabolite, (+) M1, also binds to the mu-opioid receptor. Only a few small clinical studies have examined tramadol's efficacy on neuropathic pain. In one study of 34 patients with polyneuropathy of varying etiologies, tramadol was superior to placebo at reducing both ongoing and touch-evoked pain The most common side effects of tramadol are somnolence, constipation, and headache. Tramadol should be avoided in patients with a history of seizures or substance abuse. In addition, there is a risk for serotonin syndrome if given with other serotonergic agents, such as SSRIs, MAO inhibitors, and triptans.


    Opioids: A small body of evidence suggests that opioids may relieve neuropathic pain in a select population of patients. Opioid analgesia appears to be dose-dependent and related to serum levels when used to treat neuropathic pain. Intravenous fentanyl is more effective than placebo at reducing neuropathic pain, regardless of etiology. Controlled-release oxycodone may decrease pain and allodynia associated with postherpetic neuralgia when given at doses of 20-60 mg/day. Morphine has also been used to treat nerve injuries. In general, neuropathic pain relief with opioids remains controversial. Neuropathic pain may be less responsive to opioids than other types of pain, and often requires the addition of one of the previously discussed agents to provide relief. As a pudendal pain sufferer myself, I have to say that opiods have definitely helped me with my issues with pain. It helps to keep the "edge off" of the pain, but does not totally take away the pain. If you feel that your pain is not being managed well with non opiod medications, then speaking to your doctor about medication management with opiods would be the next step in managing the pain.


    Other Agents: Baclofen is used as a first-line agent to treat trigeminal neuralgia, with or without anticonvulsants. Baclofen blocks both presynaptic and postsynaptic GABA B receptors, which are concentrated in the spinal cord on the primary afferent neurons. This decreases the response of nerves to electrical stimulation and other pain stimuli. It may also inhibit the release of substance P. The most common side effect is drowsiness, which is partially avoidable by starting with a low dose and titrating slowly.


    Ketamine, an N-methyl-D-aspartic acid (NMDA) receptor antagonist, has garnered increased interest for treating neuropathic pain in the past decade. New evidence suggests that NMDA receptors play a role in mediating neuropathic pain. In a comparative trial, ketamine, but not morphine, relieved continuous and lancinating pain, and allodynia in postherpetic neuralgia. Most studies done to date used short-term infusions of ketamine. Long-term parenteral use of ketamine can lead to painful indurations at the site of injection and psychomimetic effects. Ketamine is chemically related to phencyclidine (PCP), and causes sedation, slowed reaction times and hallucinations with long-term use.


    Neuropathic pain remains a clinical challenge for treatment. Any medication used to treat neuropathy must be weighed for benefits and risks before using. It may take several trials to find an effective medication or combination of medications. People may need support throughout the process. Neuropathic pain often requires a combination of medication and nonpharmacologic modalities in order to achieve adequate pain relief.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  6. #6
    ICN Member Kara29's Avatar
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    Physical Therapy

    PHYSICAL THERAPY FOR PN/PNE

    Physical Therapy



    Physical therapy is extremely important in treating pudendal neuralgia . This is one of the things that everyone with PN type symptoms should try. The difficult part, is trying to find a physical therapist who has knowledge of pudendal neuropathy.

    One thing to avoid with physical therapy is kegal exercises. With kegals, you work on strengthening the pelvic floor, but if you have pudendal neuralgia, your pelvic floor is already tight and the Kegal exercises would make them even tighter. Kegal exercises should be avoided until most of the PN symptoms have disappeared. You can start to work yourself up slowly with the Kegal exercises, once the pain has dissipated.

    There are a few goals when treating PN with physical therapy. You need to find a pelvic floor physical therapist whom does both internal and external work. Some of the goals in physical therapy include:

    1. Eradicate myofascial trigger points - The term "trigger point" was coined by Dr Janet Travell (1942) to describe a clinical finding with the following chacteristics:

    Pain related to a discrete, irritable point in skeletal muscle or fascia, not caused by acute local trauma, inflammation, degeneration, neoplasm or infection. The painful point can be felt as a tumor or band in the muscle, and a twitch response can be elicited on stimulation of the trigger point. Palpation of the trigger point reproduces the patient's complaint of pain, and the pain radiates in a distribution typical of the specific muscle harboring the trigger point. The pain cannot be explained by findings on neurological examination.

    What is a Fascia: Fascia (from latin: a band) is the soft tissue component of the connective tissue system that permeates the human body. It interpenetrates and surrounds muscles, bones, organs, nerves, blood vessels and other structures. Fascia is an uninterrupted, three-dimensional web of tissue that extends from head to toe, from front to back, from interior to exterior. It is responsible for maintaining structural integrity; for providing support and protection; and acts as a shock absorber.

    Common Myofascial trigger point sites include the rectus abdominus, adductors, gluteus minimus, medius, and maximus, obturator internus, piriformis, and quadratus lumborum. Physical therapists will utilize various techniques to help with trigger points. They include manual therapy, trigger point injections and dry needling.

    Dry needling, is much like acupuncture. The term "dry needling" is purported to describe the technique of using acupuncture needles on trigger points to release tight muscles.

    Procedure for dry needling: To perform the technique, select a 32-guage needle, one inch in length. Find the spasm and insert the needle perpendicularly through the subcutaneous tissue until you contact the spasm. You will feel a definite density change. Do not insert the needle into the muscle. Rather, "bounce" the needle on the muscle using wrist action. This is done anywhere from one to three times a second. When the spasm releases, you will feel the release as a "softening." It's unmistakable and often is felt by the patient as well. Immediately withdraw the needle, and gently massage the area to facilitate qi and xue flow. This might be repeated as necessary along the muscle if there are numerous spasms, or in other muscle groups.

    2. Lengthening the Pelvic Floor - Most PN'ers have an extremely tight pelvic floor. This makes the pelvic floor shorter than normal. The goal would be to lengthen the pelvic floor muscle, so that the muscles are no longer in a constant state of contraction. A shortened pelvic floor can compress the pudendal nerve. Physical therapy will use internal vaginal and/or rectal manual therapy, trigger point injections and myofascial release to help lengthen the pelvic floor.

    3. Minimize Subcutaneous Panniculosis - This basically means connective tissue restrictions. If the tissues are restricted there will be a decrease in blood flow, muscle atrophy, and thickening of the subcutaneous tissue. Physical therapists will utilize a technique called connective tissue manipulation (CTM) and is performed with minimal pressure as the therapist pushes through the subcutaneous tissue. The goal of CTM is to restore connective tissue integrity, improve circulation and decrease general water retention.

    4. Reduce adverse neural tension - Occasionally, the path a nerve takes through the body is narrowed or impinged. This disrupts its normally smooth movement. Typically this occurs as the nerve passes through a muscle or around a bone. Symptoms, such as tingling and numbness, often arise further along the path of the nerve.

    Neural tension is defined as an abnormal physiological and mechanical response produced from nervous system structures when their normal range of movement and stretch capabilities are tested. Tight muscles, connective tissue restrictions, and anatomical narrowing of spaces such as Alcock's canal can contribute to neural tension. Manual therapy techniques termed "neural mobilizations" are used to free restricted spaces and restore mobility to peripheral nerves.

    Physical therapists will use nerve glides and connective tissue manipulation to lessen the constriction and give more space for the nerve, so it is no longer impinged. Other modalities used are ultrasound. Ultrasound: uses sound waves and may be used to decrease scar tissue, increase blood flow, or decrease pain. Also acupuncture may be of help, as acupuncture uses small, solid needles to encourage healing, reduce pain, and improve function of affected areas of the body.

    5. Mobilize connective restricted tissue - With pudendal neuralgia, the nerves can "cross talk" with other nerves, thus sending signals to other nerves in other parts of the body. Sometimes muscles in other areas of the body may become affected and show hyper tonicity. Other areas that could be affected are the lower abdomen, low back, lower extremities and the gluteal region. Physical therapy can help to release some of the muscular tension in these regions. Some techniques used to treat this would be connective tissue manipulation and dry needling.

    6. Normalize structure and mechanics - Sometimes, people with pudendal neuralgia can also have structural issues, such as SIJD,( Sacroiliac Joint Dysfunction) pelvic obliquity, issues with core strength and neuromuscular control, and hip mechanics.

    What is SIJD? - The sacroiliac joint lies next to the spine and connects the sacrum (the triangular bone at the bottom of the spine) with the pelvis (iliac crest). The joint: · Is small and very strong <

    · Transmits all the forces of the upper body to the pelvis (hips) and legs

    · Acts as a shock-absorbing structure

    · Does not have much motion

    While it is not clear how the pain is caused, it is thought that an alteration in the normal joint motion may be the culprit that causes sacroiliac joint pain. In the case of sacro-iliac joint dysfunction, abnormal joint positions such as aninnominate rotations will result in increased tension on the ligaments through which the pudendal nerve passes. As a result, the ligaments may compress or shear the nerve and lead to inflammation.

    What is Pelvic Obliquity? - Pelvic obliquity is the failure of the pelvis to lie in a perfectly horizontal position in the frontal plane. It is a progressive condition and in severe cases can lead to the dislocation of the hip joint and, due to sitting imbalance, to decubitus. Treatment involves manual therapy techniques to correct joint deviation and a home exercise program to strengthen and re-educate the muscles to maintain proper joint position and stability. Prolotherapy is sometimes also used to treat SIJD. Also used are stabilization belts, exercises and orthotic devices, to help correct structural problems. Other techniques utilized by physical therapists that may help to treat pudendal neuralgia are biofeedback, exercises and looking at ways to facilitate muscle relaxation.

    Do you need to find a Physical Therapist in your area? Please go to our physical therapy page to find a pelvic floor physical therapist near you. Physical Therapist Page.

    There is a wonderful web site called the American Physical Therapy Association. If you cannot find a physical therapist in your area with our Physical Therapy Page, we would suggest using this web site to find certified physical therapists in your area. You can look under the "Women's Health Section". American Physical Therapy Association
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  7. #7
    ICN Member Kara29's Avatar
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    Botox

    BOTOX for PN/PNE

    Botox

    Botox is now being utilized for pudendal neuralgia.. The same general theory is applied when using Botox for pelvic pain. With pudendal neuralgia, if the nerve is inflammed and/or entrapped, it may cause muscle spasms, which then continually impinge on the pudendal nerve, never giving it a chance to fully recover. With Botox, the nerve has an opportunity to recover, as it will stop any muscle contractions. There are different areas that Botox is now being used for pudendal neuralgia. Different pelvic floor muscle groups like piriformis, obturator internus and even more recently, Botox into the Alcock's canal. Most injections are done under guidance, so that they can directly hit the muscle groups that they are trying to target.

    Botox article by D r. Gajraj - Dr. Noor Gajraj has been helping people with pelvic floor and PNE-type symptoms by administering Botox injections. Dr. Gajraj has published this article which explains the Botox injection technique that he uses.


    What is Botox

    Botox® is a trade name for botulinum toxin A. In this way, Botox® is related to botulism. Botulism is a form of food poisoning that occurs when someone eats something containing a neurotoxin produced by the bacterium Clostridium botulinum. Botulinum toxin A is one of the neurotoxins produced by Clostridium botulinum.

    The most serious symptom of botulism is paralysis, which in some cases has proven to be fatal. The botulinum toxins (there are seven -- types are A through G) attach themselves to nerve endings. Once this happens, acetylcholine, the neurotransmitter responsible for triggering muscle contractions, cannot be released. A series of proteins, VAMP syntaxin and SNAP-25, are essential for the release of acetylcholine. Certain botulinum toxins attack these proteins. Botulinum toxin A (Botox) affects the SNAP-25.

    Basically, the botulinum toxins block the signals that would normally tell your muscles to contract. Say, for example, it attacks the muscles in your chest -- this could have a profound impact on your breathing. When people die from botulism, this is often the cause -- the respiratory muscles are paralyzed so it’s impossible to breathe.

    A good candidate for Botox would be someone whom has tried different techniques such as physical therapy, which provided no long term relief.
    Botox in the Body

    After the botulinum toxin is injected into the affected muscle(s), the spasms or contractions are reduced or eliminated altogether. The effects of the treatment are not permanent, reportedly lasting anywhere from three to eight months. By injecting the toxin directly into a certain muscle or muscle group, the risk of it spreading to other areas of the body is greatly diminished. Other applications for Botox® are currently under investigation. It has been reported that spasmodic dysphonia, a neurological disorder that affects the muscles of the larynx, responds well to Botox® treatment.

    Botox® (botulinum toxin type A) is successfully used to treat blepharospasm, strabismus, and cervical dystonia -- these are all conditions that in some way involve , involuntary muscle contractions.


    Botulinum toxin type A side effects

    Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects, some of which can occur up to several weeks after an injection:

    trouble breathing, talking, or swallowing;

    unusual or severe muscle weakness (especially in a body area that was not injected with the medication);

    problems with vision or depth perception;

    severe skin rash or itching; or

    chest pain or heavy feeling, pain spreading to the arm or shoulder, general ill feeling.
    Less serious side effects may include:

    muscle weakness near where the medicine was injected;

    bruising, bleeding, pain, or tenderness where the injection was given;

    headache, muscle stiffness, neck or back pain;

    fever, cough, sore throat, runny nose, nausea, flu symptoms,

    dizziness, drowsiness, anxiety;

    dry mouth, dry eyes;

    increased sweating
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  8. #8
    ICN Member Kara29's Avatar
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    Pudendal Nerve Blocks

    PUDENDAL NERVE BLOCKS

    Pudendal Nerve Blocks

    In the context of PNE, a nerve block involves injecting a liquid at a precise location near a nerve. For a small nerve like the pudendal that takes slightly different paths in different people, this requires more than just studying a person's body and deciding where to insert the needle, at what angle, and how deep. It requires imaging of some type, such as Xray (fluoroscope) or CT. Without the accuracy these imaging systems provide, it is difficult or impossible to know if the needle tip is located correctly. If incorrectly located, the nerve can be damaged or the injected liquid will be too far away to have its intended effect. Dr. Bensignor says the needle tip must be within one millimeter of the target.

    There are two main types of injected liquids: a local anesthetic and slow-release steroids. The local is a short term diagnostic tool. If the pain goes away and stays gone for the short term, the location was correct and the nerve can be suspected of being a contributor or the sole source of pain. The steroids are a long term therapeutic attempt. In some cases they will cause the nerve, if it is irritated, to get better. This can take days or weeks, and improvement may be temporary or permanent. This delay explains why physicians prefer a delay of several weeks between nerve blocks with steroids. If the nerve is not irritated, the steroids have no effect. The local anesthetic is usually lidocaine and heparin. The long term anesthetic is usually cortisone. Although, sometimes the doctors will mix different anesthetics for different people.

    Two main locations are used. The ischial spine block is done by injecting into the sacrospinous ligament. Alcock's canal block is done by injecting into the sacrotuberous ligament. These are not the same as the blocks carried out for childbirth pain. In some cases the blocks may worsen the pain a little but this should last only a few days.

    It appears that steroids have less than a 5% chance of curing PNE. Of the many nerve blocks that Dr. Ken Renney's team has done, they have "cured" only one patient with nerve blocks alone. This was a 17 year old male football player who had had the condition for only 3 weeks. After two injections he returned to football with "no discomfort." As Ken wrote to me on 10/1/2003:



    "We have only cured ONE person [with nerve blocks] since we started and I have seen about 150 patients. Not great stats but it's the truth."

    This agrees with the generally low percentage rate seen in PN patients as a whole on the discussion forums. We were all scratching our heads. No one seemed to know anyone who had been cured by nerve blocks alone, though a few had seen a reduction in pain. For a few people that have undergone the nerve blocks, there have been some that have seen a permanent worsening of symptoms.

    When the nerve block is conducted under guidance, they usually have the patient lay down in the prone position. The doctor will put in an anesthetic, to make the buttocks numb, so that you can't feel the needle as much as it is trying to find it's target, the pudendal nerve. When the doctor is able to find the pudendal nerve, he will then inject either the local aneesthetic or the long term steroid. The procedure itself lasts approximately 30 minutes. This is done on an outpatient basis. No overnight stay is required. If you feel no pain, it means that you had a positive response to the nerve block and the pudendal nerve is the probable culprit. If you still have pain after the block, it concludes one of two things.

    1. The pain is not as a result of the pudendal nerve or

    2. The physician did not get close enough to the nerve to feel any effects. Usually the physican might order another block to make sure that they can entirely rule out pudendal neuralgia, by trying to see if they can get close enough to the nerve again.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  9. #9
    ICN Member Kara29's Avatar
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    Pudendal Nerve Decompression Surgery

    PUDENDAL NERVED DECOMPRESSION SURGERY

    Pudendal Nerve Decompression Surgery

    Pudendal nerve decompression surgery is an option that is usually considered after more conservative therapies such as lifestyle changes, pelvic floor physical therapy, and nerve blocks have not proved to be successful. In the published literature PNE surgery can achieve a success rate of anywhere from 60% to 85% but success does not necessarily mean a cure. Surgery is generally considered successful if there is at least a 50% reduction in pain and symptoms. Occasionally pain and symptoms are permanently worse after surgery therefore the decision should be made carefully.

    There are four approaches to pudendal nerve decompression surgery but only three of them have been described in the peer-reviewed literature. The four approaches are the transgluteal approach, the trans-ischiorectal fossa approach, the perineal approach, and the laparoscopic approach.

    Transgluteal (TG) approach

    The transgluteal approach was first described in the literature by Professor Robert in France and is probably the most widely used method of decompression surgery offering the greatest visualization of the nerve during surgery. The incision is made in the buttocks through the gluteal muscles on one side for unilateral surgery or both sides for bilateral surgery. The sacrotuberous (ligament (ST) is windowed and stripped from muscular attachments and the sacrospinous (SS) ligament is divided releasing any compression at the ischial spine. If the ischial spine is abnormally elongated sometimes it is partially shaved off. Some surgeons transpose the nerve slightly to prevent future stretch on the nerve. The Alcock’s canal is explored with the help of a small instrument or the surgeon’s finger and the nerve is released from any fascia that might be tethering it. Some surgeons use a modified version of the TG approach and avoid cutting the ligaments as much as possible. This results in less visualization of the nerve. One surgeon who performs the TG approach replaces the severed ST ligament with cadaver tissue.

    Advantages of TG approach

    Best visualization of the nerve

    If the nerve is entangled in the ST ligament there is access to release it from the ligament

    Disadvantages of TG approach

    Relatively large incision

    Possible post-operative pelvic instability from severed ligaments

    TG surgery publications

    Pudendal Nerve Entrapment by Prof. Robert

    Observations on the TransGluteal Decompression of the Pudendal Nerve by Dr. Antolak

    Decompression and transposition of the pudendal nerve in pudendal neuralgia: a randomized controlled trial and long-term evaluation by Prof. Robert

    Pudendal Nerve Entrapment as source of Intractable perenial pain. by Dr. Renney

    Pudendal Entrapment as an Etiology of Chronic Perenial Pain: Diagnosis and treatment Dr. Charles Popney

    Results of pudendal nerve neurolysis-transposition in twelve patients suffering from pudendal neuralgia. by Mauillon

    TG surgery photo

    After surgery photo with TG approach




    Trans-ischio-rectal-fossa (TIR) approach

    The TIR approach was first described in the literature by Dr. Eric Bautrant in France.

    For women a small incision is made in the back of the vagina about half-way up. For men the incision is in the perineal area between the scrotum and anus. In most cases the surgeon severs or partially severs the sacrospinous ligament to release the compression between the ST and SS ligaments. The Alcock’s canal is explored by the surgeon’s finger and the nerve released from any fascia that might be tethering it.

    Advantages of the TIR approach

    Smaller incision

    Spares the ST ligament

    Disadvantages of the TIR approach

    Less visualization of the surgical area

    No access to the ST ligament if the nerve is entangled in that ligament

    TIR surgery publications

    New Method for the treatment of Pudendal Neuralgia by Dr. Bautrant






    Perineal approach

    In the perineal approach described by Prof Ahmad Shafik a small vertical incision is made in the perineum between the anus and sit bone on one side for unilateral surgery or both sides for bilateral surgery and the surgeon uses a finger to free up the nerve in the Alcock’s canal. For a modified perineal approach the surgeon also uses the tip of the scissors and finger to open up the fascia between the SS and ST ligaments.

    Advantages of perineal approach

    Least invasive

    Spares all ligaments

    Disadvantages of perineal approach

    Least visualization for the surgeon

    Unless modified, does not deal with entrapments at ischial spine

    Difficult or impossible to free nerve from entanglement with ligaments

    Perineal surgery publications

    Pudendal Nerve Decompression in Perineology: A case series by Dr. Beco

    Pudendal Canal Decompression in the treatment of Erectile Dysfunction by Dr. Shafik

    Trans-Perineal Pudendal nerve Decompression by J. Mouchel

    Pudendal canal syndrome as a cause of vulvodynia and its treatment by pudendal nerve decompression by Dr. Shafik

    Role of sacral ligament clamp in the pudendal neuropathy (pudendal canal syndrome): results of clamp release by Dr. Shafik




    Laparoscopic approach

    There are several physicians who perform this approach but no teams have published results yet.

    Laparoscopic surgery is a minimally invasive surgery that requires three small incisions. A tube called a laparoscope attached to a video camera is inserted through an incision in the belly button. Two additional incisions are made at the pubic hairline through which tiny instruments and items such as sutures can pass.
    During laparoscopic surgery the sacrospinous ligament is severed allowing visual access of the nerve at the ischial spine and Alcock’s canal. The nerve is freed from scarring, fibrotic tissue, and swollen varicose veins. A solution of heparin may be infused into the area to prevent scar tissue from forming. Manipulation is minimal and usually patients can go home within 24 hours.



    Laparoscopic surgery publications

    Intra-abdominal laparoscopic pudendal canal decompression - A feasibility study by Loukas




    What to Expect Before and After Surgery

    Most of the PNE surgeons require that you have a series of nerve blocks prior to deciding to have surgery. If the nerve blocks do not provide permanent relief and you decide to have surgery the most important thing to remember is that the recovery period takes time.

    Usually pudendal nerve decompression surgery is performed under general anesthesia and there is a 1 to 4 day hospital stay afterward, depending on the procedure you have. Often you will have a urinary catheter in place temporarily. Some of the surgeons put in temporary drains, marcaine pain pumps, or vaginal packing. If there are no complications you can be up and walking around the day after surgery. If you traveled a long distance for your surgery it will be necessary to stay in a nearby hotel for a few days after surgery until your surgeon determines that it is safe for you to return home.

    Many people find soft gel ice packs very helpful during the recovery period. It is a great anti-inflammatory and it also helps to numb a painful nerve.

    It is important not to become constipated after surgery so that you do not put additional strain on the nerve. This can be a challenge if you are taking opioids for pain relief. Please refer to the section on constipation on this website for ideas on how to prevent constipation.

    For patients who have incisions in the vagina or perineal area it is important to keep these very clean to prevent infection.

    Typically sex can be resumed 6 weeks after surgery if there are no complications but you should follow the instructions given by your surgeon.

    Most people require pain medications for many months after surgery. Pudendal nerve surgery is not the same as most surgeries because nerves take a long time to heal. You may feel new pains or increased pain temporarily as you recover. Many people experience shock-like pain as the nerve is regenerating, especially around the 3 to 4 month point. Often the recovery takes as long as a year and many patients have reported improvements as late as 2-3 years after surgery. Often people return to work several months after surgery although most are not completely pain-free yet and require the use of special stand-up workstations and cushions.

    Often many pelvic muscles are in spasm pre-operatively as well as post-operatively. Many patients find physical therapy from a pelvic PT specialist helpful after surgery to get their muscles back into a relaxed state. Most of the surgeons recommend PT be avoided for at least a month after surgery. Swimming is considered an excellent exercise although the breast stroke or frog kick should be avoided.

    As you can see, PNE surgery is not an easy surgery to recover from. Published statistics show that between 60% and 80% of patients have at least a 50% improvement in symptoms although there are some people who have reported a worsening in symptoms.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  10. #10
    ICN Member Kara29's Avatar
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    Neuromodulation for PN/PNE

    NEUROMODULATION FOR PN/PNE

    Neuromodulation

    Neurostimulation therapies are used for pain relief or symptom relief from certain types of chronic pain. Spinal cord stimulation (SCS) is actually a subcategory of neurostimulation, which also includes peripheral nerve stimulation. SCS and peripheral nerve stimulation use an implanted device—a neurostimulator—to deliver low levels of electrical energy directly to nerve fibers. This direct approach to treating pain at its source can be very effective.

    The type of neurostimulation that might be appropriate for your condition depends on many factors, including the cause of your pain, its type, and location. To find out more about neurostimulation, follow our guide below.

    What It Is—Neurostimulation is an "advanced" therapy that is used to relieve certain types of chronic pain. "Advanced" means that before deciding on neurostimulation, people have usually tried simpler options to relieve their pain. Neurostimulation therapy does require a minor procedure. This procedure is most commonly performed in two separate stages—a temporary trial and a permanent procedure.

    What It Isn't—Neurostimulation is not a cure for what's causing the pain. It's a therapy that's designed to mask your pain by blocking pain signals before they reach the brain. Pain is then replaced with a more pleasant sensation called paresthesia.

    What It May Do—Neurostimulation may help reduce your pain to a manageable level, so you may be able to return to some of the activities you enjoy. Many people consider neurostimulation successful if it reduces their current pain level by 50% or more.


    How Spinal Cord Stimulation Works

    For spinal cord stimulation (SCS) to control your pain, you must have a small system placed in your body. An SCS system looks and works a lot like a pacemaker. In fact, SCS systems are sometimes called “pacemakers for pain.” An SCS system generates mild electrical pulses and sends them to your spinal cord. These electrical pulses replace the feeling of pain with a tingling or massaging sensation.

    To understand how spinal cord stimulation (SCS) works, it is helpful to understand the components of a spinal cord stimulation system. SCS systems typically consist of three components designed to work together:
    Leads—Very thin cables that deliver electrical pulses to nerves along your spinal cord.
    Generator—Small device that holds the electronic components and sends the electrical current through the lead.

    Controller—"Remote control” that lets you adjust the strength and/or location of the electrical pulses that are pre-programmed.


    Spinal Cord Stimulation: A Proven Therapy for Pain

    If you have been living with chronic pain, spinal cord stimulation (SCS) may provide new hope. Spinal cord stimulation has been identified to be an effective treatment option for many chronic pain sufferers.



    .

    Spinal cord stimulation is a medical therapy for people who suffer from certain types of chronic pain. SCS uses a small implanted device to generate tiny electrical pulses that replace the feeling of pain with a tingling or massaging sensation.

    Spinal cord stimulation is a widely accepted medical treatment. It is an FDA-approved therapy for treatment of chronic pain of the trunk and limbs (back, legs and arms). Many major health insurance plans, Medicare and worker’s compensation programs provide benefits and coverage for SCS therapy.

    Each year as many as 50,000 neurostimulators are implanted worldwide.2 A study of chronic pain sufferers who used ANS neurostimulators3 revealed the following:

    * 84% reported that their quality of life was improved or greatly improved
    * 77% had good or excellent pain relief
    * 82% decreased their use of pain medications

    SCS is not a cure for pain. The objective with this therapy is to reduce your pain to a manageable level.
    Why Choose SCS?

    Spinal cord stimulation has three significant advantages:

    1. It can be very effective in relieving certain types of pain in the back, legs and arms.
    2. You can try SCS before you have a permanent system placed in your body, so you'll know if the therapy will work for you.
    3. The system can be turned off permanently or removed if you don't get the level of relief you desire.

    Will SCS Help Me?

    Spinal cord stimulation is not for everyone—for several reasons:

    * Your doctor may want to try less advanced treatment options first, such as pain medications, physical therapy, nerve blocks or other therapies.

    * You may have a type of pain that does not respond well to SCS.

    The best way to find out whether or not SCS could help you is to talk to your doctor about having an SCS trial. .
    What Are the Potential Risks and Complications?

    As with any surgical procedure or pain therapy, complications can occur. Although the risk of complications is low, you should discuss all risk factors and concerns with your doctor.



    Here is a great article on neurostimulation and it's affects on PN patients.

    Sacral Magnetic Stimulation for Pain Relief from Pudendal Neuralgia and Sciatica
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  11. #11
    ICN Member Kara29's Avatar
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    Intrathecal Pump for PN/PNE


    Intrathecal Pain Pump



    Overview of the Intrathecal Pain Pump

    Intrathecal drug delivery, or “pain pump,” is a method of giving medication directly to your spinal cord. The system uses a small pump that is surgically placed under the skin of your abdomen and delivers medication (morphine or baclofen) through a catheter directly to the area around your spinal cord. Similar to an epidural that women may have during childbirth, this pain management option may be used if all other traditional methods have failed to relieve your long-term symptoms. Because the medication is delivered directly to the spinal cord, your symptoms can be controlled with a much smaller dose than is needed with oral medication.

    This pump can help lessen spasticity (muscle rigidity and spasms that make movement of the arms and legs difficult).



    What is an intrathecal drug pump?

    The fluid filled space around your spinal cord is called the subarachnoid or intrathecal space. Cerebrospinal fluid (CSF) flows through this area, bathing and protecting your brain and spinal cord. Intrathecal drug delivery works much more efficiently than oral medication because it delivers medicine directly into the CSF, bypassing the path that oral medication takes through your body. In fact, you generally need about 1/300 the amount of medication (morphine or baclofen) than when taking it orally. This therapy is completely reversible if you should ever decide to have the pump removed.



    The pump system

    The pump is a round metal device about the size of a hockey puck that is surgically implanted just beneath the skin of your abdomen. A catheter, or small plastic tube attached to the pump is also surgically placed and delivers pain medication directly into the intrathecal space.

    A space inside the pump called the reservoir holds the medication. When the reservoir is empty, the doctor or nurse refills the pump by inserting a needle through your skin and into the fill port on top of the reservoir.

    Your doctor uses an external computer-like device to program the pump to slowly release the medication over a period of time. The pump also can be programmed to release different amounts of medication at different times of the day, depending on your changing needs. The pump stores the information about your prescription in its memory, and your doctor can easily review this information with the programmer.



    Am I a candidate?

    You may be a candidate for intrathecal drug delivery if you meet the following criteria:

    * Conservative therapies have failed
    * You would not benefit from additional surgery
    * You are dependent on pain medication
    * You do not have psychological problems
    * You have no medical conditions that would keep you from undergoing implantation
    * You are not allergic to any of the drugs used in the pump
    * You have had positive response with a trial dose of medication



    Who performs the procedure?

    Neurosurgeons and doctors who specialize in pain management and spine disorders implant pain pumps.

    The procedure is performed in two stages: Stage 1 is a trial and Stage 2 is implantation of the permanent device.

    Stage 1. Trial
    Before you can have surgery, you must undergo a “trial run” to see if the device decreases your level of pain. Depending on your particular condition, one of the following screening tests will be necessary.

    1. Single injection: you will receive one injection of intrathecal medicine (morphine or baclofen) via a lumbar puncture.
    2. Multiple injections: you are given multiple injections over a series of days by either a lumbar puncture or catheter.
    3. Continuous trial: a catheter is placed in the correct area of your spine and connected to an external pump. The dose is increased every 2 hours until you notice pain relief.

    Stage 2. Permanent implantation
    During the trial, your doctor gathered information about the best location for the catheter and the type of drug that works best for you.



    What happens before surgery?

    You may be scheduled for presurgical tests (e.g., blood test, electrocardiogram, chest X-ray) several days before surgery. In the doctors office you will fill out paperwork and sign consent forms. Patients are admitted to the hospital the morning of the procedure. No food or drink is permitted past midnight the night before surgery. An intravenous (IV) line is started in your arm. An anesthesiologist will explain the effects of anesthesia and its risks.



    What happens during surgery?

    There are two parts to the procedure: 1) placement of the catheter in the intrathecal space of the spinal cord, and 2) placement of the pump/reservoir in the abdomen. There are five main steps of the procedure. The operation generally takes 3 to 4 hours.

    Step 1. Prepare the patient
    You are placed on the operative table and given anesthesia. Once asleep, your body is rolled onto its side. Next, the areas of your back and stomach are shaved and prepped where the catheter and the pump are to be placed.

    Step 2. Placement of the leads
    A small skin incision is made in the middle of your back. The bony arch (lamina) of the vertebra is exposed. The catheter is placed in the subarachnoid, or intrathecal space, above the spinal cord and secured in place with sutures.

    Step 3. Tunneling of the extension
    Once the catheter is in place, an extension catheter is passed under the skin from the spine, around your torso to the abdomen where the pump will be implanted.

    Step 4. Placement of the pump
    A 4-6 inch skin incision is made in the side of your abdomen below the waistline. The surgeon creates a pocket for the pump between the skin and muscle layers. The extension catheter is attached to the pump. Next, the pump is correctly positioned under the skin and sutured to the thick fascial layer overlying the stomach muscles.

    Step 5. Test stimulate
    You will be awakened so that the permanent generator and the placement of the leads can be tested. You must be able to tell the surgeon if the tingling sensation is the same as during the trial stimulation.

    Step 6. Close the incisions
    The incisions in your back and abdomen are closed with sutures or staples and a dressing is applied.



    What happens after surgery?

    You will wake up in the postoperative recovery area, called the PACU. Your blood pressure, heart rate, and respiration will be monitored, and your pain will be addressed. Most patients are discharged home the same day. You will be given written instructions to follow when you go home.

    Discharge instructions

    Discomfort

    1. Right after surgery, pain is managed with narcotic medications. Because narcotic pain pills are addictive, they are used for a limited period (2 to 4 weeks). Also, their regular use may cause constipation, so drink lots of water and eat high fiber foods. Laxatives (e.g., Dulcolax, Senokot, Milk of Magnesia) may be bought without a prescription. Thereafter, pain is managed with acetaminophen (e.g., Tylenol).
    2. Ask your surgeon before taking nonsteroidal anti-inflammatory drugs (NSAIDs) (e.g., aspirin; ibuprofen, Advil, Motrin, Nuprin; naproxen sodium, Aleve). NSAIDs may cause bleeding and interfere with bone healing.
    3. Spinal headaches are caused by leakage of cerebrospinal fluid around the catheter or lead site. Lie flat and drink plenty of caffeinated non-carbonated fluids (e.g., tea, coffee).

    Restrictions
    4. Avoid these activities for 6 to 8 weeks to prevent movement of the catheter/leads:
    -do not bend, twist, stretch, or lift objects over 5 pounds
    -do not raise arms above your head
    -do not sleep on your stomach
    -do not climb too many stairs or sit for long periods of time
    5. Do not drive for 2 to 4 weeks after surgery or until discussed with your surgeon.
    6. Housework and yard-work are not permitted until the first follow-up office visit. This includes gardening, mowing, vacuuming, ironing, and loading/unloading the dishwasher, washer, or dryer.
    7. Postpone sexual activity until your follow-up appointment unless your surgeon specifies otherwise.

    Activity
    8. Gradually return to your normal activities. Walking is encouraged; start with a short distance during the 1st two weeks and then gradually increase to 1 to 2 miles daily. A physical therapy program may be recommended.

    Bathing/Incision Care
    9. You may shower as directed by your surgeon. Do not take a tub bath or submerge yourself in water for 4 weeks. Pat your incision dry with a soft towel to avoid irritation.
    10. Inspect the incision line twice daily.
    11. Fluid may accumulate under the skin around the catheter/leads or the device creating a visible swelling. Call the doctor if this occurs. Seromas usually disappear by themselves but may require a drain.
    12. Steri-strips may cover the incision. After showering, gently pat dry the steri-strips. Gently remove steri-strips after one week. Sutures or staples that remain in place when you go home will need to be removed. Ask your surgeon or contact the office to find out when.
    13. Wear loose clothing over the incision site to maintain comfort and prevent skin irritation.

    When to Call Your Doctor
    14. If your temperature exceeds 101 degrees F or if the incision begins to separate or show signs of infection, such as redness, swelling, pain, or drainage.
    15. If your headache persists after 48 hours.
    16. If you have sudden severe back pain, sudden onset of leg weakness and spasm, loss of bladder and/or bowel function - this is an emergency - go to a hospital and call your surgeon.



    Refilling the pump

    You must schedule medication refills on a regular basis with the surgeon’s office or a pain management specialist. At your refill appointment, the effectiveness of your treatment will be assessed and your pump will be adjusted accordingly. The goal is to find the optimal amount of pain or spasticity control while having minimal side effects. You should tell your doctor if you experience unusual symptoms, drug overdose, or feel that your dosage is ineffective. You may need to take supplemental oral medicine if you have periods of stronger pain.



    What are the results?

    Most patients have a 50% reduction in pain as well as overall improvement in functional abilities. Oral medications are reduced because the medicine is delivered directly to the spinal cord and much smaller dosages are needed. Remember this is not a cure for your disease. Activities that affected your condition prior to the implantation of this device will continue to do so.



    What are the risks?

    Side effects for intrathecal pain pumps are minimal, although they do exist. As with all surgeries, complications may include infection and bleeding. The catheter could move or become blocked, or the pump could stop working (rare). Accumulation of fluid (cerebrospinal fluid leak) can occur around the pump causing a clear watery discharge from your incisions or a headache. These usually disappear on their own but may require a drain.

    Side effects from the drugs (overdose or underdose) may include respiratory depression, twitching, muscle spasm, urinary retention, constipation, nausea, vomiting, dizziness, anxiety, depression, edema.

    Depending on how much medication the pump delivers, the battery will eventually need to be replaced every 5 to 7 years.



    Living with an intrathecal pump

    Just like a cardiac pacemaker, other devices such as cellular phones, pagers, micro-waves, security doors, and anti theft sensors will not affect your pump. Be sure to carry your Implanted Device Identification card when flying, since the device is detected at airport security gates.

    If you hear the pump making beeping sounds, call the doctor’s office immediately. This may indicate that the pump needs refilled, battery needs replaced, or other maintenance.

    Withdrawal symptoms from the medication you are receiving may cause you some discomfort or in extreme cases may require emergency treatment. Inform family members and friends about what to do in an emergency; always carry your Emergency Information and Procedure cards with you at all times.

    Reasons for removal of the device include infection, failure to relieve pain, and patient misuse.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  12. #12
    ICN Member Kara29's Avatar
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    Emotional Aspects of PN/PNE


    Emotional Aspects of Dealing with PN and Chronic Pain


    If you have a condition like pudendal neuropathy, you need to realize that constant pain, no diagnosis, or treatment failure usually causes intense frustration, anger, denial, aggression, depression, anxiety and other emotions. This receipt of bad news is all part of a perfectly predictable and normal pattern. It is nothing to be ashamed of or feel guilty about. But if it's never happened to you before, you may not recognize the pattern for what it is, and become trapped in a downward spiral of inability to deal with your problems. This pattern causes the average person to begin thinking irrationally and behaving abnormally.

    The pattern is called the Cycle of Acceptance, which is also sometimes referred to as the Cycle of Grief, or the The Kübler-Ross grief cycle. Entering it is unavoidable upon receipt of bad news. How long it takes you to complete the cycle is critical. The longer you are in it, the less likely you will ever fully complete the cycle, the more likely you will be unable to manage your condition wisely, and the more likely you will be terribly unhappy.


    BACKGROUND

    For many years, people with terminal illnesses were an embarrassment for doctors. Someone who could not be cured was evidence of the doctors' fallibility, and as a result the doctors regularly shunned the dying with the excuse that there was nothing more that could be done (and that there was plenty of other demand on the doctors' time).

    Elizabeth Kübler-Ross was a doctor in Switzerland who railed against this unkindness and spent a lot of time with dying people, both comforting and studying them. She wrote a book, which is now world famous, called 'On Death and Dying'..

    In the ensuing years, it was noticed that this emotional cycle was not exclusive just to the terminally ill, but also other people who were affected by bad news, such as losing their jobs, divorce, pain or anything else being negatively affected by change. The important factor is not that the change is good or bad, but that they perceive it as a significantly negative event.



    There are two diagrams of the Cycle of Acceptance, that may be helpful in understanding it more accurately. Many of us have gone through this. Take heart. Nearly all of us have emerged from this unpleasant but common phenomenon okay. We can help you through it too, if you will just honestly acknowledge what is happening to you.

    *

    Shock stage: Initial paralysis at hearing the bad news.
    *

    Denial stage: Trying to avoid the inevitable.
    *

    Anger stage: Frustrated outpouring of bottled-up emotion.
    *

    Bargaining stage: Seeking in vain for a way out.
    *

    Depression stage: Final realization of the inevitable.
    *

    Testing stage: Seeking realistic solutions.
    *

    Acceptance stage: Finally finding the way forward.


    Sticking and cycling
    Getting stuck

    A common problem with the above cycle is that people get stuck in one phase. Thus a person may become stuck in denial, never moving on from the position of not accepting the inevitable future. When it happens, they still keep on denying it, such as the person who has lost their job still going into the city only to sit on a park bench all day.

    Getting stuck in denial is common in 'cool' cultures (such as in Britain, particularly Southern England) where expressing anger is not acceptable. The person may feel that anger, but may then repress it, bottling it up inside.

    Likewise, a person may be stuck in permanent anger (which is itself a form of flight from reality) or repeated bargaining. It is more difficult to get stuck in active states than in passivity, and getting stuck in depression is perhaps a more common ailment.
    Going in cycles

    Another trap is that when a person moves on to the next phase, they have not completed an earlier phase and so move backwards in cyclic loops that repeat previous emotion and actions. Thus, for example, a person that finds bargaining not to be working, may go back into anger or denial.

    Cycling is itself a form of avoidance of the inevitable, and going backwards in time may seem to be a way of extending the time before the perceived bad thing happens.



    Note that the Cycle of Acceptance phenomenon can cause people to engage in complaints (due to frustration), arguments (due to frustration and aggression), and attacks (due to aggression). This is perfectly normal behavior, but it is unproductive and distracting. Therefore these are unacceptable types of behavior unless those you are communicating with are prepared to deal constructively with your behavior.

    If you do not honestly acknowledge the Cycle of Acceptance and try to get to the acceptance stage, you will be emotionally vulnerable and

    probably undergo tremendous emotional suffering. Three extreme forms of this are pathological behavior, severe depression, and emotional breakdown.



    1. Examples of pathological behavior are prolonged vicious arguments, verbal attacks, verbal abuse, physical abuse, and substance abuse. Pathological means behavior that is habitual, maladaptive, and compulsive.

    2. The second form, severe depression, is similar to emotional breakdown, but is less healthy because it lacks the tendency for self repair that occurs when breakdown causes the mind to take a rest. There are many theories. One is that depression centers around being subconsciously convinced a problem is insolvable no matter what you do. This makes the conscious mind feel trapped, hopeless, and full of despair. In solvability is a rational, normal, initial conclusion, but is often false, due to misperception of the problem or unawareness of a solution or a problem solving path to at least a partial solution. The depressed mind is muddy, while the one in breakdown has gotten away from the source of the problem and is thus cleared up a little.

    For these reasons and a host of others that are little understood, severe depression frequently leads to thoughts of suicide. Despite strong taboos, this is a perfectly normal response and nothing to feel guilty about. All the mind is doing is examining alternatives. In fact, due to the prolonged intense pain of PN and the way this disrupts one's normal lifestyle and happiness, if you never consider the option of suicide for at least a little while, you are probably in the minority and are not examining alternatives. The drawback to suicide is it's an inflexible, permanent alternative.

    The first step to get out of depression is to acknowledge it is happening and is a normal, expected part of the Cycle of Acceptance.

    3. The third form, emotional breakdown, is the mind's way of dealing with inability to find a rational way out. Instead of continuing to take action that is leading nowhere, the mind does nothing for awhile. While this is called a breakdown, it is actually a reliable coping mechanism that almost always leads to a return to a normal existence, and understanding and acceptance of the "problem." The mind is simply taking time off to repair itself.

    In many cases the "problem" is not the original problem, but a new one you became emotionally vulnerable to while suffering from the first problem. For example, those suffering from stress or pain are much more vulnerable to psychological abuse, also called verbal abuse.




    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".
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  13. #13
    ICN Member Kara29's Avatar
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    List of Positive Coping Mechanisms for people with a chronic illness.

    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.


    Facing the reality of your illness 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.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  14. #14
    ICN Member Kara29's Avatar
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    Anatomy of the Pudendal Nerve

    To see images of the Pudendal Nerve in Womenn and Men go to this link:
    http://pudendalhelp.com/anatomical_i...rtant%20Images

    This is where I've gotten all of the previous information.....


    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  15. #15
    ICN Member Kara29's Avatar
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    List of PN/PNE Physicians

    North American Physicians

    Dr. Stanley Antolak is located in Minnesota and is a urologist formerly with the Mayo Clinic that has spent many years treating patients with pelvic pain. He performs pudendal nerve motor latency tests, guided nerve blocks, warmth detection threshold test (WDT) and administers the self care program.

    The Center for Urologic and Pelvic Pain

    MAPS Pain Clinics
    7400 France Ave South, Suite 100
    Edina, MN 55435
    763-537-6000
    Website: www.centerforurologicandpelvicpain.com

    ------------------------------------------------------------------------------------------------

    Dr. Mark Conway is and ob / gyn that is the head of the obstetrics and gynecology department at St. Joseph's Hospital in Nashua, New Hampshire. Dr. Conway has made multiple trips to Aix in Provence to learn the TIR surgical technique from Dr. Eric Bautrant and to learn Dr. Eric deBisschop's technique for EMG study of the pudendal nerve (pre-operatively and intra-operatively). Dr. Conway has partnered with Dr. Quesada (an anesthesiologist) and Lynne Assad (a physical therapist) to create the first comprehensive pudendal neuralgia treatment center in the country, offering conservative therapies, medication management, EMG studies, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.

    OB / GYN Associates of Southern New Hampshire

    30 Daniel Webster Highway, #30
    Merrimack, NH 03054
    Phone: 603-883-3365

    ------------------------------------------------------------------------------------------------

    Dr. Aaron Filler is a neurosurgeon that offers a pudendal neuralgia diagnosis as well as surgical treatment in Santa Monica, California. If you are interested in making an appointment, you can contact Dr. Filler directly through this appointment request form on his website.

    Institute for Nerve Medicine
    Center for Advanced Spinal Neurosurgery
    2716 Ocean Park Boulevard, Suite 3082
    Santa Monica, CA 90405
    Phone: 310-314-6410
    Toll Free: 866-41-NERVES
    Fax: 310-314-2414


    ------------------------------------------------------------------------------------------------

    Dr. Allan Gordon, a neurologist with offices in Toronto, Ontario, performs guided nerve blocks to treat PN / PNE.

    The Wasser Pain Management Centre
    Mount Sinai Hospital
    600 University Avenue, Rm. 1160
    Toronto, Ontario, CANADA MSG 1X5
    Phone: 416-586-5997
    -------------------------------------------------------------------------------------------------



    Dr. Michael Hibner is a surgical gynecologist St. Joseph's Medical Center, Phoenix, Arizona. He is also an Assistant Professor of Clinical Obstetrics / Gynecology at the University of Arizona, College of Medicine.

    Arizona Center for Chronic Pelvic Pain

    St. Joseph's Medical Center
    800 W. Thomas, Suite 800
    Pheonix, AZ 85013
    Phone: 602-406-6017
    Fax: 602-406-4011


    -------------------------------------------------------------------------------------------------

    Dr. Sheldon Jordan is a California based neurologist that performs guided nerve blocks and performs the pudendal nerve motor latency test.

    2811 Wilshire Boulevard, #800
    Santa Monica, CA 90403
    Phone: 310-829-5968, ext. 244

    -------------------------------------------------------------------------------------------------


    Dr. Stephen Irving Mann, based in California, performs the pudendal nerve motor latency test.

    2801 K Street
    Suite 410
    Sacramento, CA 95816
    Phone: 916-733-5024

    ------------------------------------------------------------------------------------------------

    Dr. Eduardo Quesada is an anesthesiologist in Manchester, New Hampsire. Dr. Quesada manages medication, performs CT guided nerve blocks, and does localized injections. Dr. Quesada has partnered with Dr. Conway (an ob / gyn) and Lynne Assad (a physical therapist) to create the first comprehensive pudendal neuralgia treatment center in the country, offering conservative therapies, medication management, EMG studies, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.

    Pain Management Center

    The Elliot Hospital
    One Elliot Way
    Manchester, NH 03103
    Phone: 603-663-6730

    -------------------------------------------------------------------------------------------------

    Dr. David Redmond is a physiatrist that performs pudendal nerve motor latency tests in South Carolina.

    1910 Blanding Street
    Columbia, SC 29201
    Phone: 803-256-4107
    E-mail: mdredmond@prodigy.net



    -------------------------------------------------------------------------------------------------

    Dr. Ken Renney is the diagnostic physician and coordinator for patients wanting to have treatment in Houston, Texas. Other members of the Houston Team include Dr. Charles Popeney (Neurologist), Dr. James Murphy (Radiologist), and Dr. Lee V. Ansell (Neurosurgeon).

    Houston Orthopaedics Sports Medicine Associates, P.A.

    2500 Fondren Road
    Suite 209
    Houston, TX 77063
    Phone: 281-565-8800
    Fax: 281-565-8808


    ------------------------------------------------------------------------------------------------

    Dr. Jerome Weiss is a urologist in San Francisco, California that is a leader in conservative treatments for pudendal neuralgia. He performs nerve blocks, physical therapy, trigger point injections and heparin injections.

    The Pacific Center for Pelvic Pain and Dysfunction

    1199 Bush Street
    Suite 650
    San Francisco, CA 94109
    Phone: 415-441-5800
    Fax: 415-441-4946



    -------------------------------------------------------------------------------------------

    Dr. Richard Marvel is an Obstetrician/Gynecologist. He is currently able to provide diagnosis and treatment for pudendal neuralgia. He is able to provide pudendal nerve blocks and also has been trained in the Transgluteal Approach to surgery. He also is currently offering Botox injections as well.

    6569 North Charles Street
    Physicians Pavilion West Suite 705
    Towson, MD 21204
    Phone: 443-632-0200

    -------------------------------------------------------------------------------------------

    There is a Dr. Fred Howard who diagnosis PN and is able to provide pudendal nerve blocks. His information is:

    Dr. Fred Howard, Jr., M.D., M.S.
    Professor of Obstetrics & Gynecology.
    Telephone: (585) 275-4004
    585-241-3210
    http://www.urmc.rochester.edu/obgyn

    --------------------------------------------------------------------------------------------------

    Dr. Octavio Calvillo, is a Board Certified Anesthesiologist, with an added qualification in pain management, in Texas. He is currently performing the pudendal nerve blocks. He is also able to provide medication management, for neuropathic pain.
    Dr. Octavio Calvillo, MD, PhD
    Interventional Pain Management
    6560 Fannin, #1612
    Houston, TX 77030
    713-979-3190 office
    713-979-0132 fax
    Website: www.paindiagnostics.org
    Email: painmodulation@yahoo.com







    International Physicians



    There are also a limited number of physicians around the world treating pudendal neuralgia and pudendal nerve entrapment:

    Dr. Gérard Amarenco is a neurologist that administers nerve blocks for PN patients.

    Rééducation Neurologique et Explorations Périnéal
    Rothschild Hospital
    33 Boulevard de Picpus
    75012 PARIS
    France
    Phone: +33 140 19 36 41
    E-mail: gerard.amarenco@rth.aphp.fr

    -------------------------------------------------------------------------------------------------

    Dr. Andrew Baranowski is a urogynecologist that performs nerve blocks. He generally is in the practice of diagnosing and treating uro-genital pain related issues.

    National Hospital for Neurology and Neurosurgery
    Queen Square, London WC1N 3BG
    Phone: 020 7837 3611


    -------------------------------------------------------------------------------------------------

    Dr. Eric Bautrant is a pelvic surgeon in France who performs the trans-ischio-rectal fossa approach to pudendal nerve decompression surgery. This approach requires a small vaginal incision in women and a small incision between the anal area and scrotum for men. Usually the sacrospinous ligament is partially severed to relieve the compressed nerve but the sacrotuberous ligament is spared. To read more about his procedure click on this link: http://www.perineology.com/files/pne_bautrant.pdf

    It is best to contact him through e-mail.

    Dr. Eric Bautrant

    L'AVANCEE
    25, rue Victor Hugo
    13100 AIX EN PROVENCE
    Phone number: 04 42 37 38 07
    Fax : 04 42 26 60 76
    ebautrant@l-avancee.fr
    chir.gyneco@l-avancee.fr

    -------------------------------------------------------------------------------------------------



    Dr. James Beco is a perineologist who performs pudendal nerve decompression surgery using the perineal approach. As a modification to Prof. Shafik’s perineal procedure, Dr. Beco opens the “clamp” between the sacro-spinal and sacro-tuberous ligaments. It is not a true “clamp” but actually a space closed by a fascia called the “fascia lunata”. After opening this fascia from the coccyx to the ischion there is a large space between the 2 ligaments where the nerve can move freely. He does not believe it is necessary to cut the ligaments to free the nerve. At the end of the surgery he separates the pudendal nerve from the sacro-spinal ligament which can be a difficult procedure. Link to overview of Dr. Beco’s procedure: http://www.perineology.com/files/iug...oster-beco.pdf

    Dr. Beco’s contact information:

    HC Clinique Sainte-Elisabeth
    Rue du Naimeux
    B-4802, Heusy
    Belgium

    Office address:
    9a Avenue Hanlet
    B-4802 Heusy
    Belgium
    Phone: 00 32 / 87 23 01 69
    Fax: 00 32 / 87 23 04 69
    E-mail: Jacques.beco@skynet.be



    -------------------------------------------------------------------------------------------------

    Dr Jean-Pierre Spinosa practices in Swizterland and uses Prof. Shafik’s technique for PNE decompression.


    FMH gynécologie et accouchements
    Médecin Chef adjoint Hôpital de Morges
    Anc. Médecin associé, Unité de périneologie, Hôp. Univ. Genève
    Rue des Terreaux 2
    1003 - Lausanne - Suisse
    00 41 21 3290980
    spinosa@deckpoint.ch

    -------------------------------------------------------------------------------------------------

    Professor Roger Robert leads a team of physicians from Nantes, France that diagnose and treat pudendal neuralgia. Prof. Robert developed the trans-gluteal technique for surgical release of the nerve. This team of physicians includes Dr. Labat, a neurologist that performs EMG, pudendal nerve motor latency testing and other tests to confirm the presence of PNE. Dr. Riant is an anesthesiologist that performs nerve blocks and assists in the diagnosis effort. Dr. Guerineau is a Kinestherapist and physical therapist that through his techniques, reduces muscle spasm thereby decreasing a patient's pain level. Since contact is only available via mail, please include your name, date of birth, address, phone number, a history of your symptoms, treatments that you have tried, and an e-mail address, if available.
    Professor Roger Robert
    c/o Dr. Maurice Bensignor
    Centre Catherine de Sienne
    2 Rue Eric Tabarly
    44202 NANTES CEDEX
    France

    -------------------------------------------------------------------------------------------------

    Dr. Bruno Roche leads a team of physicians from Geneva, Switzerland. Dr. Roche is a surgeon specializing in coloproctology and perineal surgery. He was trained by Professor Robert in the trans-gluteal technique of surgical decompression. He works closely with Dr. Alex Cahana, an anesthetist and chief of the pain clinic. Dr. Cahana specializes in pain evaluation and infiltrations. Dr. Joan Robert-Yak performs pudendal nerve motor latency testing and handles any neuromodulation treatment that may be required.

    Unité de Proctology
    Hopitaux Universitaire de Geneve
    1211 Geneve 14
    Phone: +41 22 372 79 34
    Fax: +41 22 372 79 09
    E-mail: Martine.Martelletta@hcuge.ch


    ------------------------------------------------------------------------------------------------

    Dr. Eric de Bisshop is a pelvic neurologist who pracitices in Aubagne close to Marseille, France. He performs EMG’s and does EMG guided pudendal nerve and ilioinguinal nerve blocks. He works with surgeon, Dr. Thomas Perez who performs PNE decompression surgery using the trans-vaginal approach for women.

    Dr. de Bisshop works with his wife, Dr. Rajeshree Nundall who uses angiology to assess the pudendal blood vessels. If there is a pudendal nerve entrapment the blood vessels will also be entrapped since they travel alongside each other. Angiology confirms EMG testing and gives information about tissues including scar tissue after surgery. This is a link to Dr. Nundall’s scientific paper: http://www.perineology.com/files/doppler-nundlal.pdf



    This is Dr. de Bisshop’s contact information – the best way to contact him is through e-mail:

    55, avenue des Goums
    13400 Aubagne,
    France
    Phone 00 33 442 163 395
    rajeshree@free.fr

    ----------------------------------------------------------------------------------------

    Prof. Thierry Vancaillie is currently doing PNE surgery after working with Dr. Bautrant in France.
    Prof. Vancaillie has an International reputation for innovative procedures in gynaecology. He is Assoc. Professor of endogynaecology.
    The clinic is known as the Pudendal Nerve Diagnostic and Treatment Unit

    Royal hospital for Women, Randwick, NSW.
    Prince of Wales Hospitals.
    Tel: = 02 9382 6557 (if calling from Australia)
    - +61 2 9382 6557 (if calling from outside Australia)

    ----------------------------------------------------------------------------------------------



    Dr. Les Roberts is a neurologist in Melbourne Australia. He is available to conduct the pudendal nerve motor latency testing.


    Dr. Les Roberts
    St Vincent's Health
    P O Box 2900
    Fitzroy
    Victoria 3065
    Australia
    Tel: (03 94191933)
    http://www.svhm.org.au/



    -----------------------------------------------------------------------------------------------

    Dr. Tim Pavy is a PN aware doctor and is the head of the Anesthesia and Pain Management at King Edward Memorial Hospital.

    Dr. Tim Pavy Head of Anaesthesia & Pain Management
    King Edward Memorial Hospital
    Subiaco
    Western Australia
    Tel: + 61 8 9340 2222 (if outside Australia)
    08 9340 2222 (within Australia)

    --------------------------------------------------------------------------------------------------------------------------------------------------

    Dr. Peter Courtney is a Pain Management specialist who also is very PN aware. His practice includes General Pain Medicine utilising diagnostic and theapeutic injections of spine and sympathetic nerves. Radiofrequency neurotomy, trigger point therapy and hypnotic relaxation techniques.

    Suite 14
    166 Gipps St
    East Melbourne, Victoria 3145
    Australia
    Telephone: (03 94176625)
    email: petercourtney@asag.com.au
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

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