Big Whoop!!! pudendal neuralgia

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Arline, how sad that you think pudendal neuralgia is a crock. How amazing it was for me to hear those words. "I know what is wrong with you and it is called pudendal neuralgia." This from the 23rd doctor that I saw. I had a diagnosis, a real one and then I could set out trying to figure out how to get rid of it. Do you think any of us would stop searching because we've been duped by a doctor who 'made us think we know what is wrong with us'? Of course we all have our own paths to follow. I had two nerve blocks and they definitely helped, but I think they mainly helped in that they enabled me to tolerate more invasive PT. For me, my pudendal neuralgia (big whoop!!!) was caused by neuromuscular problems. And I do believe in my heart that if I went much longer without getting proper help that I would have developed allergies and sensitivities. I am all for

getting tested for gluten sensitivities. I am all for getting help however your heart tells you to and whatever feels right. But please, don't knock the diagnosis of pudendal neuralgia. It is real and it is part of the problem for most with pelvic pain. love, Molly To me "Pudendal Neuralgia" is one of those words tomake patients think they know what is wrong withthemselves. Neuralgia is a pain along a nerve.Pudendal Neuralgia is a pain along the pudendal nerve.Big whoop!!!! (Sorry, I hate these misleading words).Wherever there is nerve pain there is something nastygoing on and the cause if possible should be found If you have pain, maybe anerve block will help but it won't solve the problembecause nobody knows what the problem is caused by.One can get nerve blocks anywhere on the body and notjust for the pudendal

nerve. Sales wrote: Arline, Thanks for the reassurance and encouragement Getting the enterolab test is definitely on the top of my list of things to try. I had seen some of what you were writing a few weeks ago about it and did check out their website. My questions are: Which test would you think would be the best to have done? I tried figuring it out myself but didn't really understand everything- I

figured you have a little bit more knowledge about the different tests???.... Would the results come to me or have to go to a doctor? Would I be able to understand the results if it came to me? If the test came back positive, what would that mean? Simply changing my diet to try to eliminate the bad stuff???? Hopefully you can help me understand it a little better. By the way, what was your clitoral pain like? Mine is more with sitting with pressure directly on the area and feels like an aching/sore feeling kind of like something is gently squeezing it. When I describe it like that, to me, it sounds like some kind of nerve entrapment or something....however my doc doesn't seem to think so.....who the heck knows. Thank you! Berry Home <lberryinfoave (DOT) net>

wrote: Arline, I've been reading some stuff online about leaky gut syndrome... and the stuff I read is interesting because it basically says leaky gut syndrome causes a lot of food allergies and intolerances... apparently, a whole lot of people have it and don't know it. I've never been tested either. It could be that's what was going on with the guy you mentioned below too.... does the gluten intolerance cause the leaky gut or the other way around? I found this yesterday.. Leaky gut syndrome, or intestinal permeability, is a condition in which the intestinal lining is more

permeable than normal, which means there are unusually large pores or spaces between the cells that make up the intestinal wall. This additional space allows toxic substances such as bacteria, viruses, parasites, and other harmful factors to enter the bloodstream and reach every part of the body. In a healthy gut, these toxins are eliminated. One feature of leaky gut syndrome is that undigested fats and proteins can escape into the intestinal wall, resulting in allergic responses by the body. Food allergies develop from a leaky gut when the large protein molecules (from food with protein/amino acids) pass through the intestinal wall and are absorbed before they are completely metabolized. The immune system recognizes these proteins as invaders and creates antibodies against them. Eventually, whenever you eat that particular food, the body attacks the protein, and a food allergy is born.

Leady gut syndrome and the inflammation of the intestinal lining that accompanies it can be triggered by use of antibiotics, corticosteroids (e.g. prednisone), nonsteroidal anti-inflammatory drugs (NSAIDs, e.g. aspirin, ibuprofen), birth control pills, foods contaminated by parasites, molds, or bacteria (e.g., E. coli, Salmonella, Listeria), viruses (e.g., rotavirus, HIV), excessive intake of refined sugars, enzyme deficiency (e.g./ celiac disease), caffeine, alcohol, food additives, surgery, and a decrease in blood supply to the bowel. In the case of long-term use of antibiotics, for example, the good bacteria in the gut are destroyed, leaving the body's number one site for production of antibodies virtually unprotected. Incoming pathogen meet no resistance, and the resulting inflammation leads to leaky gut syndrome. Symptoms that often accompany leaky gut are intestinal cramps, diarrhea, constipation, fatigue, bloating, and gas. A very common cause of GI injury is the use of NSAIDs. In a recent study, colostrum helped prevent GI injury in patients taking the NSAID indomethacin. This suggests that colostrum may also be effective in preventing GI damage caused by other NSAIDs, including aspirin and ibuprofen (e.g., Motrin, Advil). Another feature of leaky gut syndrome and bowel inflammation is malabsorption of minerals, which leads to mineral deficiencies. These deficiencies occur because the special carrier proteins, which transport the minerals from your food and supplements from the intestine to the bloodstream, are damaged by the inflamed gut lining. A zinc deficiency caused by poor absorption, for example, can result in hair loss (alopecia areata), and magnesium deficiency is common among people with fibromyalgia, even when they take supplements of magnesium, because the gut allows the mineral to leak into the

bloodstream. Mineral deficiencies can lead to osteoporosis, arthritis, heart disease, fatigue, memory loss, headache, inability to concentrate, and irritability. The far arm of leaky gut syndrome reaches still further. The inflammation in the gut damages an immunoglobulin known as IgA, which works in the healthy gut to protect against infection. Without the help of IgA, pathogens can escape into the bloodstream and infect any part of the body. An overstressed liver can result in confusion, loss of concentration, and other mental and cognitive problems. The article goes on to recommend something called Colustrum for leaky gut. Any of you have this? ----- Original

Message ----- From: BABB To: VulvarDisorders Sent: Wednesday, January 03, 2007 2:01 PM Subject: Re: Need some ideas about clitoral pain ,I wouldn't push your doctor. He will just convince youthat it is an internet scheme or something like that.There is so little correct information on this subjectand the blood tests they use are almost hopeless inthe doctors' offices.I am glad you have a kind and caring doctor but Idoubt he knows much about this subject. You don't haveto go through

him. You can order the test or testsonline yourself. THey will send you a packet ofmaterial and instructions. If you have good insuranceyou can submit it yourself to the insurance companywith the paperwork from Enterolab has given you if youask and hope they they reimburse you. If yourinsurance is not so good you will have to swallow thebill.If money is a big problem just order the glutensensitivity test. That is the crucial one which willtell you a lot. KNowing that you are sensitive togluten is a BIG DEAL..Neurologists are beginning to be told that all theirpatients with neuropathy should be tested for glutensensitivity problems and that is the easiest,cheapest, and most obvious thing to try right awaybefore one starts paying out a lot of money or gettingshot up with anything if they think it is going to doany lasting good results. Don't ask your doctor ifit is all right to take

this test but wait until youget the results and if it is positive, tell him. hehheh heh!!Gluten antibodies attack nerves--anywhere. (So doesmilk but gluten is the important one). Some kind ofantibody is attacking your body. I think since it isso easy to take this or these tests, that is where oneshould start.I had a dentist appointment this morning and there wasa forty year old man there waiting to have hisappointment. In April he had his forty year oldphysical exam and was told he was all right. Sincethen he has been sick and the doc told him not toworry about it. Finally the doc discovered that hisblood tests had shown in April that he was havingkidney failure. He had a biopsy and was diagnosed withIgA Nepropathy, a kind of kidney failure caused bycertain kinds of antibodies called IgA. Apparentlythey tested him with more blood tests to see if he hadCeliac Disease and said he didn't. I am

having a fitas I know he needs to have these stool tests done atenterolab or he will likely not be living five yearsfrom now. He needs to find out what foods are causingthese IgA reactions and depositing it in his kidneys.I told him, I hope he calls the lab and talks to thedoctor, but I am sure he is not well and isoverwhelmed. Who am I but an old hysterical lady (butI do know a few things ;O). The stool tests atEnterolab are life savers. If gluten is causing yourpain, you need to know it. Whatever is causing it, youneed to know it if possible. This is so easy. Youdon't have to drive three or four hours, or submit toanything if you don't want to right now.So, after that little lecture, please considerordering the test for 99.00 plus postage and find out.>then I'll have to say "well i went> behind your back and did this....">If the man is worth his medical degree he will be

gladyou discovered it and try to learn something. Youaren't going behind anybody's back. This is yourlife!!!! Not his. He doesn't have a reservation onyour attempts to stop your pain and get well. Youdon't have to tell him anything. Sometimes it issmarter not to tell them things but that is up to you.He probably has some contract with labs that he has touse and wouldn't be able to refer you to this anyway.Whatever you decide I wish you well in your efforts tosolve this mystery that is so painful for you.Arline> --- Sales <emsuc02> wrote:> Arline,> > I would like to get that test done, but I don't> know if my doctor will go for it. I feel bad> "insisting" on things to try/test for when he's the> doctor but I feel that at this point we should be> trying anything. I just don't want to

p*** him off> because I've been through about 5 doctors and he> seems to be the most knowledgeable and caring around> here because there is no one else to try without> having to drive 2 or 3 hours. I'm also afraid to go> try things on my own because if they come back> showing something then I'll have to say "well i went> behind your back and did this...."> > I mentioned pudendal nerve entrapment and he> didn't seem to think that was my problem because he> said with that you usually have pain on one side. > However with all my research I know that is not> always true, not to mention, since the clitoris is> small and there are so many nerves I feel that it> would be difficult to feel pain on only one side. > However he did mention possibly trying some nerve> blocks, so wouldn't that mean pudendal neuralgia?> > Do I have to go through my doctor

to get that> gluten test? __________________________________________________