Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I’m very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want – for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

Interested in more discussions like this? Go to the Chronic Pain group.

@bkruppa

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.

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Everything you have done, I have done. Nothing works. CBD 200mg does nothing for my pain. THC 10-15 mg is a distraction so I use that. Research Abbot laboratories re stimulator. Call them up, talk to them. I'm having another try at it with 3 leads placed instead of one, hoping that come of them stay in place. I have had surgery to move the nerve so it wouldn't hurt, but it didn't work at all and cost me $25,000, uncovered. DO NOT GO TO DR LEE DELLON IN BALTIMORE. HE IS A TOTAL FRAUD AND PRAYS ON DESPERATE PEOPLE.

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@clashganny

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.

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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.

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@thejimhale

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?

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I had 2 MRNs at Stanford. While they confirmed damage to the nerve they were not able to pinpoint the location so not that useful.

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I also had a failed DRG trial, one of the leads came out right away. However my doctor felt even with the one lead in I should have gotten some relief so now I need to try a peripheral nerve stimulator.

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Has anyone tried or heard of using Sprint PNS for pudendal nerve pain?

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@mikaylar

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.

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@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

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@kjs1964

@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

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Acupuncture useless.

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@mikaylar

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.

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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.💕💕🙏🙏🙏🙏💕💕💕

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@skeleton

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.💕💕🙏🙏🙏🙏💕💕💕

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Thank you. Happy Easter!

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@dhc684

Has anyone tried or heard of using Sprint PNS for pudendal nerve pain?

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I’m not 100% sure , but I think the sprint device is a short term thing , or at least it was when it first came out.

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The Sprint goes in for 60 days and then the claim is the nerve signal to the brain is reprogrammed so the relief continues after it is removed. However there research is for more common issues like back pain and not for pudendal nerve pain.

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I hope you’ve gotten help by now.

Do not go to Mayo Clinic if you have perineal pain. Do two things:

1. Call Michael Hibner in Phoenix and get a tele-appointment. If you really have pudendal neuralgia, a tele-appointment might be the best $500 you ever spend.

2. Go to the support group pudendalhope.org to discuss things (including Dr Hibner) with other victims of this cruel disease.

And the other poster is correct about Lee Dellon (although mercifully, he is now retired).

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