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Hi, two weeks days ago, I felt for the first time pain in my rectum area. I went to a doctor, he examined me and said there is nothing obvious that is causing this pain. I read somewhere that this could be symptom of pudendal nerve entrapment. Does anyone know something about this condition?

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Hello, I suffer from pudendal nerve entrapment. It took a long time for developing, and I haven’t even realized it. It appeared suddenly, without warning. I just started having burning sensation one day, and it developed to a pain. A doctor told me that my pudendal nerve entrapment was probably caused by long sitting in my office. However, there are many other possible reazons for its developing, eg. inflamation, stretching or scarring of pudendal nerve, pressure, trauma…. Fortunately, pudendal nerve entrapment can be treated. Physical therapy and steroid injections are helping me, so I don’t have to consider a surgery. As soon as you diagnose this condition, the better are chances for recovering.
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Yeah. I know it does not exist.



I was diagnosed with "PNE" multiple times -- by phone (2x) and by email (1x) and by an in-person doctor after reviewing a super-high resolution MRI which revealed no PNE (but he gave me that diagnosis anyway). A fifth doctor (a neurologist) confirmed, and a urologist, frustrated a year of antibioticds didn't cure me, suspected PNE.



But they were all NUTS. In my case the problem was an inguinal hernia -- and after getting it repaired and over a year, I'm pain free (I have bottles of very serious meds, and haven't taken any in 6 months).



[1] THE EUROPEAN UROLOGICAL ASSOCIATION SAYS PNE DOES NOT EXIST



Anyone claiming a radical new view of disease -- which is what PNE remains -- has the burden of proving the condition exists, and the treatments for it work. But they haven't met that burden. Straight medicine thinks PNE doctors are dangerous quacks, and for good reason. Here's what the European Urological Association has to say about it:



www.uroweb.org/files/uploaded_files/guidelines/chronicpelvicpain.pdf

February 2003 European Association of Urology GUIDELINES ON CHRONIC PELVIC PAIN

Section 7.2 Pudendal nerve entrapment. [T]he reality is that pudendal nerve neuropathy is probably only a likely diagnosis if the pain is unilateral, has a burning quality and is exacerbated by unilateral rectal palpation of the ischial spine, and the pudendal motor latency is delayed on that side only. However, such cases account for only a small proportion of all those presenting with perineal pain and the proof of the diagnosis resting on relief of pain following decompression of the nerve in Alcock's canal is rarely achieved. The value of the clinical neurophysiological investigations is debatable; some centres in Europe claim that the investigations have great sensitivity, while other centres, which

also have a specialized interest in pelvic floor neurophysiology, have not positively identified ****any**** cases.



Notice that? "The proof of the diagnosis resting on relief of pain following decompression of the nerve... is rarely achieved," or more plainly: is PNE was real, the surgery to "fix it" would work. But it works only "rarely," or so that article says. The harsh truth is there are NO statistics -- no one has a clue if it works, or makes people worse -- and that alone is serious cause for concern for an experimental procedure.



[2] THE TREND IS AWAY FROM PNE SURGERY



1. Dr. Antolak advocated PNE surgery at the Mayo Clinic until they suddenly **fired* him, and Dr. Spinner who did the surgery for him remained at Mayo, but stopped doing the surgery. Dr. Spinner admits the surgery did not work, and the Mayo Clinic no longer provides PNE surgery. (Dr Spinner is quoted below. His email address is _[removed]_)



2. Dr. R. Anderson at Stanford stopped performing PNE surgery because it does not work. Specifically, Dr. Anderson wrote:



"I have also performed surgical pudendal nerve dissection as well as placed electrodes on the nerve to alleviate pain syndromes. My experience is limited and without much success. I believe there are surgeons who are having reasonable clinical success with this procedure, but the scientific literature is not robust and needs further clarification; furthermore this procedure should probably only be done under a scientific protocol, approved by a human subjects institutional review board. I am not at present referring patients for these surgical procedures."



Translation: "done under a scientific protocol, approved by a human subjects institutional review board" is the standard for EXPERIMENTAL surgery! And one of its main requirements patient feedback to a strict standard, which PNE world completely lacks.



[3] MAYBE BICYCLING CAN CAUSE TEMPORARY NUMBNESS, NOT PAIN!



Doctors particularly love to blame pelvic pain on bicycling, which is part of bigger pattern by doctors to blame patients for their problems.. There's some evidence bicycling on poorly adjusted seats can cause temporary numbness and even erectile dysfunction in men. BUT NOT PAIN:



"In contrast to other chronic pain syndromes of the urogenital tract, there are very few case reports about chronic penile pain in the literature. If a patient presents with persistent penile pain, the pain can usually be treated by treating the underlying disease (paraphimosis, priapism, Peyronie's disease, and herpes genitalis) [26]. Acute penile pain is reported after the intracavernous injection of drugs for treatment of erectile dysfunction [27). Acute penile pain has also been examined with regard to penile prosthesis [28]; postoperative pain is one of the most negative sequelae of penile prosthesis surgery.... However, interestingly, there are no case reports in the literature indicating that a

chronic pain problem might develop after these acute noxious events. Also, surgical trauma to the penis such as occurs during routine circumcision does not seem to result in a chronic penile pain syndrome. Men who seek urologic consultation for sexual impotence vary rarely seem to suffer from penile pain.... Pudendal nerve injury in men results in sensory loss over the shaft and bulb of the penis and difficulty with erection, but persistent pain associated with the nerve injury has not been reported."

http://www.current-reports.com/article.cfm?PubID=PA03-2-0-12&Type=Article&KeyWords=



[4] SO IF NOT PNE, WHAT? THREE EXAMPLES OF A PROFESSIONAL DIFFERENTIAL



THERE ARE MANY CAUSES FOR PELVIC PAIN. You don't want a genius doctor with good guesses -- you want a boring doctor to go through the list, or in medicalspeak, the "differential". Here are three examples of differentials for pelvic pain:



http://www.physsportsmed.com/issues/2000/01_00/lacroix.htm

A Complete Approach to Groin Pain



http://www.physsportsmed.com/issues/1998/04apr/ruane.htm

When Groin Pain Is More Than 'Just a Strain': Navigating a Broad Differential

Joseph J. Ruane, DO; Thomas A. Rossi, MD



http://www.injuryupdate.com.au/ISMJGroinPain.htm

Pathophysiology of Chronic Groin Pain in the Athlete



Note that none of those lists containing many possibilities even mentions the word "pudendal."



[11] HERNIA PAIN -- PAIN THAT GETS WORSE FROM SITTING...



Ordinarily, where you hurt is where the problem is. Your fingers hurt, so examine the fingers. But pelvic pain is often more complicated -- sometimes what hurts is NOT where the problem is. Such pain is "referred pain" -- the problem is in one place, and pain there is "referred" to where it hurts some place else.



While there are many causes of referred pelvic pain, the big three are probably:



- infections

- hernias (when they irritate nerves), and

- kidney and bladder stones.



Bladder stones and hernias can also cause infections so the categories are not exclusive. Other causes of referred pain may be diverticulitis and anal fissures.



But the classic cause of pain that's mild or nonexistent most mornings, and that gets worse from sitting is -- an inguinal hernia (in men and women!). Inguinal hernias involve a bit of intestine poking through a weak spot in the abdominal sack. Most hernias are painless, but sometimes a small one (the kind most difficult to detect) presses against the genital branch of the genito-femoral nerve, and irritates it. Anything that adds pressure to the abdominal sack (sitting, lifting, eating a big meal, constipation) can cause the intestine to poke out more, irritating the nerve more. In time, inguinal hernias (like other pelvic pains) can lead to muscle spasms which make diagnosis even more difficult, because then all sorts of things hurt which are not the underlying problem.



In a way, inguinal hernias involve a part-time nerve entrapment. When the patient lies down at night the intestine is pulls back, giving the nerve a chance to recover so in the morning the patient usually feels fine. As to all this (except for the muscle spasm part) see, for example, http://hernia.tripod.com/symptoms.html and I could give you a dozen more citations (just ask me for them). Hernia surgeons have known about this since antiquity.



Here the cool part: repair the hernia and a few days later the pain is gone 100%, and forever with a very high percentage of certainty. No waiting for years, no trigger point therapy, no trips to France, no neurontin, no topamax. There are 100s of reliable multi-year studies with 100s of participants each which say so -- exactly the SCIENCE that the pudendal quacks carefully avoid because it would blow their little game.



click on "Symptoms"

http://hernia.tripod.com/HerniaInstitute_index.html

Pain occurs from hernias for several reasons, and can and does often vary in character (sharp, dull, burning etc.) and severity from patient to patient. Pain can occur because the tissue at and around the hole is being stretched or torn and therefor in some fashion damaged. This usually will cause pain directly at the site of the hernia and is Localized Pain. Pain may also occur as a result of irritation of or damage to area nerves as a result of the hernia and its contents pushing into or pinching the nerves. This too may cause localized pain, or may cause pain at a more distant area and is called Referred Pain. If the abdominal contents have become trapped or damaged within the confines of the hernia, as is

the case with hernia Incarceration or Strangulation, the pain may well become more generalized in location and may even involve the entire abdomen if secondary peritonitis develops.... If the hernia irritates, inflames or damages nearby nerves, the pain felt from the hernia may not be at the site of the hernia, but rather at the area to which these nerves are traveling. For example, pain from an Inguinal Hernia may be felt as discomfort in the scrotum of men or the labia of women, or the back, upper leg and /or hip area. This is because nerves that supply sensation to these remote areas travel through the inguinal canal (site of the hernia) and may therefore be irritated or inflamed by the hernia itself.



http://hernia.tripod.com/types.html

INGUINAL HERNIAS Sometimes only a mild pain, ache or burning in the groin area may occur prior to the development of an obvious bulge. This pain, again often described as

an ache or burning sensation, may not only be present in the inguinal area, but may also radiate into the hip region, back, leg or even down towards the genitalia region. Called "REFERRED PAIN", this discomfort can be quite bothersome and at times severe. In addition, in the absence of a bulge, the diagnosis of the cause of this pain may be delayed or mistakenly and incorrectly ascribed to other causes such as muscular groin strains, epididymitis, prostatitis or orchitis etc. These diagnoses may be maintained erroneously until the bulge develops, thereby heralding the real cause of the pain...a hernia. The discomfort with hernias usually is initiated by or increases in severity with activity, then becomes

relieved, although not always completely, with rest



http://www.aafp.org/afp/990215ap/817.html

www.leistenbruch.de/PatientLeaflet.pdf

The inguinal region constitutes a weak point in the abdominal wall. The weak point results from the fact that the so-called inguinal canal is located in the groin... ..Pressure on the nerves passing through that region - particularly the genitofemoral nerve - causes severe pain



http://www.medhelp.org/forums/gastro/messages/36693.html

It may be possible that the penile pain can be referred from the pain from the anal fissure. The fact that the symptoms are exacerbated after a bowel movement certainly supports this possibility.



http://www.sages.org/pi_inguinal_hernia.html

HOW DO I KNOW IF I HAVE A HERNIA?

You may feel pain when you lift heavy objects, cough, strain during urination or bowel movements, or during prolonged standing or sitting... The pain may be sharp and immediate or a dull ache that gets worse toward the end of the day.



[12] OCCULT HERNIAS AND POINTS FOR WOMEN



The European Journal of Surgery

Herniography in Women Under 40 Years Old with Chronic Groin Pain

Objective: To find out the prevalence of symptomatic non-palpable groin hernias in women under 40 years old with undiagnosed chronic groin pain. Subjects: 116 women 14-39 years old (mean 27) with chronic undiagnosed groin pain who underwent herniography 1977-1994. Interventions: Intraperitoneal injection of 80 ml iodine contrast medium (200 mg I/ml) Results: Hernias were found in 28 patients (24%): 17 in the right groin alone, 6 in the left groin alone and 5 bilaterally. 19 patients had hernias on the symptomatic side only. 17 patients had indirect inguinal hernias and 7 had direct inguinal hernias (which are claimed to be extremely rare in women). Conclusion: A hernia is a relatively common finding during

herniography in young women with groin pain.



1988 Sep;54(9):574-7

Non-palpable inguinal hernia in the female.

Spangen L, Andersson R, Ohlsson L. Department of Surgery, Central Hospital, Karlstad, Sweden.

A total of 142 inguinal hernioplasties in 130 female patients with nonpalpable inguinal hernias were performed over a period of 8 years. The mean age in this series was 32 years. (Range 10-76 years). One hundred thirty six cases were followed 3-51 months postoperatively. One hundred seventeen of these (86%) were considered to have good results. Nonpalpable inguinal hernia in the female is clinically recognizable on the basis of intermittency, character and localization of the pain and typical findings at the clinical examination. About three quarters of these patients report in addition to dull inguinal pain, intermittent neuralgic pain and in almost two thirds of the patients a pin-prick hyperalgesia of the

skin corresponding to the ilio-inguinal nerve can be demonstrated. It is also typical that all patients experience a distinct tenderness upon palpation over the deep inguinal ring during Valsalva's maneuvre. It is important to keep this condition in mind, especially since the patients respond well to surgical treatment.



http://epe.lac-bac.gc.ca/100/201/300/cdn_medical_association/cjs/vol-44/issue-3/pdf/pg224b.pdf

Describes two women who's pain got worse during menses. Both were discovered during laparoscopic investigation to have a hernia related problem, and both after hernia repair were pain free (one after 32 months follow up, the other after 14 months).



[13] HOW TO FIND A HERNIA SURGEON



Unfortunately, getting a small hernia that causes pain diagnosed is not easy, especially if you are overweight (making it more difficult to feel through fat). You need to find a hernia surgeon who has two characteristics:



1) the surgeon does NOTHING but repairs hernias ("a dedicated" hernia surgeon); and



2) knows the pain pattern (that hernias that cause pain usually don't hurt much in the morning, and get worse during the day, especially from sitting)



These links can help you to find a dedicated hernia surgeon:



Here's a Google that finds dedicated hernia centers.... http://directory.google.com/Top/Health/Conditions_and_Diseases/Digestive_Disorders/Intestinal/Hernias/Surgery/Surgeons_and_Clinics/



By zip code for a particular type of hernia repair

http://www.herniaoptions.com/dtcf/components/locator



Another by the zip code method sponsored by a drug company that makes a particular repair solution

www.herniasolutions.com



Guys in NY who repaired 30 or more during 2002

http://www.medicalconsumers.org/Performance_Reports_2002/NY/Hernia2002_NY/page5.html



California

http://www.hernia.com/multilocations.html



To discuss hernias

http://hernia.tripod.com/HerniaInstitute_index.html



And when palpation fails, some form of imaging may succeed. In general, CT scans do NOT reveal small inguinal hernias, but "dynamic ultrasound" (with moving around between scans and a technician who is looking for hernias) can be very effective. There's a place in Colorado that seems to have a very good and inexpensive (around $350) dynamic ultrasound specifically for hernias. http://www.riainvision.com/invision/patientinfo/conditions/patinfo_cond_hernia_sub.asp
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Hi northernspy,

I have many questions. I would really like to talk to you as I am about to take the next step in pudental treatments and they all seem scary. Could I e-mail you directly and discuss this further?

Lucia
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I am currently a patient of Dr. Antolaks. The therapy that he has been giving me with the injections seems to help. I was in excruciating pain a year ago, went to have 4 rounds of the injections and started feeling much better. I have intermittent pain and have had to go back for one more injection. I just had a kidney stone pass and it irritated the heck out of me again. When I have pain it is primarily a burning sensation that makes me feel like I have to go to the bathroom a lot. Even though I dont. I also experience PSA or persistent sexual arousal at times. Dr. Antolak said these can all be symptoms or manifestations of the nerve entrapment. Can they also be symptoms of this type of hernia? Obviously I would prefer hernia surgery and 100% improvement over a lifetime of pain and injections. Any thoughts on this?
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I was in the hospital from Jan 5,2009 thru Jan 16,09 and then again Jan 29,09 thru Feb 4, 09 for just have surgery on my overy and the doc that released me on Jan 9 with a major belly infection and I was back in the ER 4 hours later in really bad pain. And thedoc let the infection get so bad I had to have a full hyst. So I went home after have the surgery for the hyst. and for the whole month of Feb I was still haveing really bad pain so I went to my doc and she didnt know what this lump was I had and it hurt so bad that I couldn't stand for the doc to touch it. So there again I have to go back to the ER on March 8 2009 because my pain meds that I had here was not even touching it and I had some really strong stuff and in the ER the did an CT,MRI and didn't find anything so because I was in so much pain they amitted me to get the pain under control so I went in on a Monday and then on That Thursday they got a surgon in my room but there again she couldn't touch it so she numded the spot up really good so she could feel around and she hit it right on he spot that I had an entraped nerve. So she put the nerve to sleep and she said that if it don't wake up then we will not have to do another surgery So Friday morning came and she came back to my room and by then the nerve was wakeing up so she had no choice then to do the surgery. So she went in and killed the nerve and I went home the same day. So I have been out of surgery now for about 3 weeks and I don't hurt like I was so it's getting better but it kinda still hurt a little bit.
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After a surgery, I have been diagnosed with PN, possible PNE with Dr. Antolak and also vestibulitis by other doctors. I have had MRI's and nothing has been found. It seems it is not hernia pain since I was evaluated by several doctors already. How can one tell the difference? Every doctor has a different opinion so this is really challenging for everyone.

To the person is getting results from injections - I would be interested to know what you think of Dr. Antolak. I was at the Mayo clinic where he used to work and they diagnosed me with PN. I know Dr. Antolak has the same issue which is why he has an interest.

You could also e-mail me directly.

annie
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Northernspy - you seem to have learned a lot of information about this issue. I've been suffering with pain going on five years. I've been told that it is PNE. I've tried everything short of surgery - including injections, physical therapy, botox injections. Could I email you directly to discuss this further. I have several questions about hernias. Thank you.
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Northern Spy you clearly have an interest in discouraging people from seeking treatment for PNE. However its undeniable that PNE exists.

The research you refer to is outdated and even Dr Anderson who you make a referance to has stated he believes P.N.E exists. Yes in your case P.N.E was misdiagnosed but you can't generalise for everyone. Its great that you got better but not everyone will be in your position.
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PNE experts....we live in Michigan, and no-one (but one lone Pain Specialist) believes here in Pudendal Nerve Pain. The doctors we have seen just role their eyes when we tell them we have been going to Minnesota for PNE injections from MAPS Medical Pain Clinic. I believe that when anything NEw or unusual pops up in the "medical field" concerning a new and unidentified medical problem...the first reaction from humans, and that includes doctors, is to "not believe". I feel those people with Pelvic Pain are the "guinepigs" or "explorers" into discovering new treatments and diagnosis for discovery of a new illness being identified. What is the truth, is that this medical problem has most likely been with us for ages, but dismissed or misdiagnosed as something else. Women have had pelvic pain for years, but it was and still often is, just called "Pelvic Hysteria Pain". However, now that more men are getting it, and doctors, it is being RECOGNIZED as a real pain, and something that needs more research on. It reminds me of Fibromyalgia....where it ALSO was not "believed" at first.
I appreciate your concern in trying to help and educate patients with severe pelvic pain...thus I want to help my husband "rule out" an "inguinal hernia" if this could be what he has. But if it is NOT this...and NO doctor can figure out what it is, then why are you so against the doctors that are suggesting it could be PNE. I understand your discouragement in doing the PNE surgery, as it is very invasive and does not have a great success rate yet. But I also hope you stay up on the updates and research on this Pudendal Neruopathy...because what in medicine was once thought false or outrageous, has often turned out to be a wonderful discovery or cure! Thus I will follow your warning...and call my husbands Internist, and ask him to:"Please rule an inguinal hernia for my husbands intense pain after a very poor post op recovery from his prostatectomy 7 months ago." Believe me, we both would much rather have this then a possible Pudendal nerve entrapment. Not doing anything for 7 months but laying down and standing is truly a disability. I Thank you for your information...keep searching and sharing on this topic!
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Hi All:

I was suffering this problem for a while but I have just found this very useful book:
"Prostate health in 90 days without drugs or surgery" de Larry Clapp .

In this book you can find a way to recover your health (including your pudendal nerve pain) and any other disease
following the author's recommendation.

Believe me it will cure you any problem not only pudendal never sindrome

Best regards
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Es cierto que una de las causas de sufrimiento del NP se debe a permanecer mucho tiempo mal sentado. No usamos nuestros isquiones ,si no nuestro periné y sacro para apoyar todo el peso del tronco y eso genera mucha tensión en el diafragma pelviano.Pero existen muchas otras causas sin descartar las vasculares y metabólicas.Este tema es un agujero negro para la medicina, pero con un buen telescopio de sentido común y conocimiento de la anatomia y patología se puede resolver.
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Northernspy,

My husband has been diagnosed with PNE but so far the medications and his 1st nerve block have offered no relief. He's been told that he does not have an inguinal hernia after physical examination. Also, his pelvic CT scan was negative. What other options are there to diagnose a non-palpable inguinal hernia? Thanks for your help.
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Hi, I have had the same thing. It started a year ago following a stressful night during my sons birth, I am the father by the way. However I got rather stressed out and had a bad cough at the time and remember an intense tearing popping sensation in my lower abdomen which has effectively been ignored by numerous GP's and physicians. I have a burning sensation in peroneum, paresthesias in genitals, hypersensitivity in pelvic region to underpants, also a strange urinary urge. Pain is worse after sitting during the day especially if driving a lot or on planes. I was tested for infection- all clear, prostate problems- all clear. The pain has blighted my life, parenthood and work performance all year.
The problem seemed to worse on one side but moved about somewhat so I went to see a chiropractor. He thought it was problems with my pudendal nerve. He seems to make progress but very slowly. Some muscle spasms in the peroneum were relieved completely after 3 rounds of dry needle acupuncture.
I was left with a much more resolved pain set however: all on my left hand side, burning following sitting and much better in the morning after sleep (laying down). I also have muscle spasms in my left buttock along the crease in my leg, pain down my leg and spreading up my back in a slow burning hot sensation. Symptoms are worse after sex and ejaculation seems to feel incomplete on the left like something is blocked. (please excuse the specifics). It appeared that trigger points in the muscles round the anus were in spasm and were very painful to examination.
I went to see a pain specialists who had a MRI scan done of my anal region which was all clear prior to planned steroid injections to the nerve.
I researched more as things did not make sense. I read that occult inguinal hernias which are common can cause all these symptoms by referred pain and that pain that is absent or mild in the morning after rest and worse after sitting or increased intra-abdominal pressure is characteristic of inguinal hernias. In fact the smaller hernias can cause more pain. I went to my GP explaining all this taking up two appointments. SHe did a pressure test while I was lying down and got me to cough a few times. The GP is looking for an "impulse" where the intestines pop through the lining of the peritoneum down into the inguinal canal. All of sudden, it felt like a champagne cork popping out of a bottle level with the crease in my leg and groin region. I was referred to hernia specialist.
The hernia specialist did a cursory exam getting me to cough while stood up. He observed a cyst on my testicle, which was not there when all this started but which has arisen probably due to strangulation of the spermatic cord, blood supply and nerves by a small hernia. He did not feel an impulse but in my humble opinion his examination was not as thorough as my GP. He proclaimed that he was not convinced I had a hernia because he could see no lump. This has actually really upset me because I feel like he has decided there will be nothing there even if he looks.
Anyway I am booked for an ultrasound and sigmoidoscopy in a couple of weeks. I am convinced I have an occult inguinal hernia. It hurts when palpated and results in "digestive disturbances". I have found, bizarrely, that turning upside down with by back to the wall relieves the pain instantly.

I think anyone that has PNE should be careful not to let have management of pain carried out without first having thorough investigations into possible hernias especially if the pain is one that is better in the morning and gets worse during sitting. I hope you all get improvement and relief from your pain, it is truly miserable and very wearing particularly when so few medical professionals seem to know about it.
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Hi, Insist on a laparoscopic exam. CT, ultrasound etc will not detect an occult small inguinal hernia if the herniated gut is not trapped during the exam.
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