Pudendal Nerve Entrapment/Neuropathy/Damage

You may want to go to a colorectal doctor. They specialize in the rectum and anal area. Gastroenterologist do not. I have had 5 colonoscopies in the last 10 years. They saw nothing. I finally was tested for Celiac, an autoimmune disease of the intestine that is genetic. Having to go Gluten Free has been hard. Food was a big part of my traveling and cooking. But the painful problem I have now is in the anal sphincter muscles. I may have an anal fissure. Standing or walking is bad as well as sitting. It is 24 hours now. I am waiting for the colorectal Dr. To call me. Before I had the Celiac diagnosis they all said I had IBS or pelvic floor dysfunction. None thought of Celiac. It has not been researched a lot and most dr. Do not even know of it. They did think it was a peudendal nerve problem and I had dozens of nerve blocks. The problem is it is very hard to access it because it is at the bottom of the spine and is almost hidden. My town of Redding does not have a doctor who knows Celiac for 100 miles. I am not sure your symptoms are in the over 200 listed. Check Mayo Clinic on the internet. I had a PN test and it just about killed me. It was definitely painful, so it could have been inflamed. Look under colorectal doctors to see their specialty’s . I also have many other genetic problems. I have used 5% lidocaine, but think it is burning now. Good luck. The doctors don’t want to treat people with difficult problems. That is why a clinic like the Mayo Clinic is good. We only have one in the west, Phoenix. There are several in the east. The university of Chicago and Cleveland Clinic have team treatments.

My wife has had pudendal nerve pain for 8 years. Initially the pain was due to a bout of shingles. However, during the recovery period I believe that something new kicked in which I believe is PNE (Pudendal Nerve Entrapment) as the symptoms are identical and to me it makes sense. The pain areas in the pelvic region are exactly where the pudendal nerve goes. PNE normally is resolved by relief of any muscle or scar tissue that may be entrapping the pudendal nerve. There are many facilities around the country that treat this condition and the treatment is massaging, dialators, etc. of the muscles that could be entrapping the pudendal nerve. My wife gets some relief from this kind of treatment but it is temporary and it only helps some. We have been to many facilities including the Mayo Clinic but the doctors don't seem to recognize PNE as mostly they want to use pain meds as a course of action. We want a solution. We have tried nerve blocks in the caudal area as well as lower in the buttocks with zero pain relief.

There is a muscle group that entraps the pudendal nerve and that is the sacrotubernous ligament which can easily entrap the nerve. There are specific massaging techniques that can relieve this pressure.

Given that my wife's pain varies doctors have agreed that the nerve is not damaged. This is good news as apparently there is no treatment for a damaged nerve.

We have looked into neurostimulators. My main concern is affect on other nerves in the probe area as well as other more serious issues. I contacted two companies about their devices and neither company has any data on helping pudendal nerve issues so we would be on our own as far as what to expect. However, I had heard about paralysis as a possible side affect. Again I contacted both companies regarding the frequency of this issue but neither would respond to my requests. That was unfortunate. Then we find that a neighbor down the street from us was paralyzed due to this procedure. Now I don't want to scare people out of going through this procedure as this is a case of one out of ...............I don't know. A 100. A 1000, A 10,000. I just don't know. A doctor at Mayo told us that 20% of these need to be readjusted (surgery) within 5 years and over time they become less and less effective. Given all of the above we chose not to go through with the procedure.

Another neuro doctor is suggesting that the pain is due to inflammation of root of the pudendal nerve which resides at the spinal cord where it connects to the spinal column. Here they want to inject steroids to reduce the inflammation. Results may be nothing, good for two weeks, two months,????? They can't predict. IF this is the source then my choice would be to determine why it is inflamed at this area and resolve this issue rather than throwing meds at it.

We are also looking into inversion tables as a source of relief. The theory being that maybe her spine is shrinking due to aging and therefore entrapping the pudendal nerve. Also since she favors sitting on one side to relieve the sensitive side maybe the spine got reformed and therefore entrapping the nerve. So we will give it a try to see what happens. We have also tried acupuncture, all the suggested vitamins for neuropathy, etc., but with no success. I read a lot of articles where sugar can cause nerve pain issues to heighten so we will be doing a sugar free diet for a couple of weeks to see what happens. MRIs show nothing but a dual frequency laser treatment has helped some but for only a day or two. My wife is on gabapentin and CBD oil. CBD oil takes some of the edge off of the pain so she uses it frequently.

Scar tissue may be another cause of entrapment. Women who have an an episiotomy during child birth can develop scar tissue in this area which is close to where the pudendal nerve travels. Haven't found any doctors who buy into this theory but a lot of my wife's pain emanates from this area so I am suspect. A PT friend of mine says that when a rotator cuff is torn in the shoulder scar tissue can form around a nerve and cause pain. In these cases surgery has helped release the entrapment. However, the nerves in this area are not complex nerves like the pudendal nerve which I guess is one reason most doctors don't want to do anything invasive since they may end up causing damage to the nerve which would result in even more pain.

Sorry for the long post. However, I wanted to present everything that we have done. I would like to hear from the rest of you about what you tried and what were the results.

I have been where you have been, have done what you have done and so much more. Nothng works. I'm trying DGR stimulator for the second time but with 3 leads instead of one, hoping that some of them will stay connected. If that does not work I will kill myself since I just cannot stand the pain, whick is getting worse, anymore. Not worth living with this.

Hi, I was loosely diagnosed with PNE by my neurologist roughly two months ago after a cystoscopy under anesthesia found nothing discernable. Diagnosis was based on symptoms, previous patients he had referred to a neurosurgeon. Since then I've done a lot of research on the subject but have not have diagnostic blocks or other tests to confirm. The symptoms started with painful ejaculation 2 years ago, emergency room visits and progressed over time to daily pain in the scrotum, penis, and rectal areas. Also effected is urination and voiding. Pain trigger points are sitting, crouching , standing too long in one spot. Relief is from walking and meds. Right now trying to be diagnosed by the right doctor of which there don't appear to be any in Florida. Considering traveling to Texas or NH for specialists. Minimally though would like to find a PM doctor close to me. Was wondering if anyone has had an MRN or a doctor they'd recommendations?

That's how I feel with my daily persistent headache every day/all day. Today is awful. But we have to have hope. There are people who love us and need us. My brother committed suicide not long ago and it hurt so many people. You are here on loan from God and he has us like this for a reason.

@jks1964 Hi - have you ever tried acupuncture for your headaches? So sorry to hear about your brother. Yes, I also believe we are on this earth for a reason, and only God knows why. Peace to you

That's how I feel with my daily persistent headache every day/all day. Today is awful. But we have to have hope. There are people who love us and need us. My brother committed suicide not long ago and it hurt so many people. You are here on loan from God and he has us like this for a reason.

I am so, so sorry about your brother. May God grant you the PEACE that surpasses all human understanding. I hope the headaches go away on their own.💕💕🙏🙏🙏🙏💕💕💕