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.

@olivedog

I am in the midst of setting up appointment at UCLA with a protégé of Dr. Villablanca, a radiologist who does an MRN mri, of the path of the pudendal nerve. He then does know exactly where it is. I am conversing with Dr. Rapkin's nurse…and will be in the back of an uber soon. She will do a televisit first. I also have a new pain management group, who are real doctors, and care. It has been a very difficult road finding any doctor who even gets this. I have no clue why urogynecologists are even used??? Nuerologists, radiologists and anesthesiologists know more than them ??? I think hopefully soon this will change as more people come forward with their debilitating issues.

Jump to this post

Go to a colorectal Doctor. See my reply below. The pudendal nerve Is very difficult to locate since it splits and goes through a tunnel. I would not want surgery on that. There are other reasons for rectal pain. It has been a 11 year battle, but I hope I am seeing the right doctor now. Go to Mayo Clinic on the internet and look at rectal pain. The 6 gastroenterologist, the neurologist, the anesthesiologist were all wrong and I had to bear the pain because of their incompetence. Finally found out I have Celiac and problems caused over my 72 years of problems. Not one mentioned of Celiac. It is an autoimmune disease, that doctors are just being trained on. It even effects your brain. In fact in Redding there is not a doctor who knows what it is for 100 miles. I have osteoporosis, after 40 years of weight lifting. Arteriosclerosis that required a 4 inch shunt in my thigh that was blocked 90% and peripheral neuropathy. All from a lifetime of malnutrition caused by my damaged small intestine. I have a 40%more chance of Cardiac problems. My digestion is not right, but now the anal and rectal pain. A colorectal doctor works on that part and can fix a fissure or tightened sphincter. Good luck, use the internet. I wish I had it in1989 when I has interstitial cystitis. None of their torchers worked.

REPLY

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?

REPLY
@pwgrimes

Have you been to a colorectal Dr. The gastroenterologist does not do that area. I am 11 years into gastro pain and 6 gastroenterologist said I had nothing wrong in my colon. Went to UCDavis and Stanford. They called it pelvic floor dysfunction. 2 years at a pelvic PT and dozens of nerve blocks. I was having dysfunction of constipation and diarrhea with pain. After 8 years of suffering my pill doctor said let’s do a Celiac test. Yes I have it. Also the genes. It explains my different medical problems for 72 years. You have to go gluten free, very hard, but helpful. My rectal pain stayed because I had a damaged intestinal system. Now it is my anal canal. I think an anal fissure from the hard feces. I finally realized I needed a colorectal doctor. The gastroenterologist does not study that area. I am laying down using Recti Care 5% lidocaine in my rectum and acetaminophen suppositories. I finally got through to a colorectal Dr. And hope he takes me. It can be a fissure or sphincter muscles dysfunction. Both can be worked on easily. I am tired of crying everyday with pain. I know your pain. Oh they worked on my pudendal nerve as well, I have interstitial cystitis as well. That nerve is very tricky, they could not get to it with a nerve block. I cannot take any meds for pain.

Jump to this post

I had this for 14 years. What finally worked was an anti-seizure medicine that I was using for headache. In less than 2 weeks I didn't have to sit on my donut anymore. Ask your doctor.
Mikayla

REPLY
@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?

Jump to this post

Hello @thejimhale and welcome to Mayo Clinic Connect. While you have more trigger points than relief options, it is good to see you found walking to be somewhat of a relief option while you explore seeing a specialist.

I have actually moved your post into an existing discussion going on in the community on the topic of pudendal nerve entrapment because I believe you will be able to more quickly hear from other members already there. You can find the discussion here for reference: https://connect.mayoclinic.org/discussion/pudendal-nerve-entrapmentneuropathydamage/

That said, I'd like to bring in members such as @pwgrimes @clashganny @olivedog @user_ch98d0b5c and @grabofsky who have all been recent contributors to this discussion. They come at this from diverse perspectives and may be able to share their experiences with you.

I wonder if you've considered seeking care at Mayo Clinic in Florida as a potential option?

REPLY
@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?

Jump to this post

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.

REPLY

Just wondering whether buckwheat is good for small fiber neuropathy. Looked at Google but got conflicting information.

REPLY

I fell in stairs that were not carpeted injuring my pudendal nerve Thanksgiving 2018. I have burning pain, like a hot poker up my buty 24/7. I sit on ice all day, can't go anywhere, basically housebound. I've been to 17 drs from New Hampshire to Boston to Manhattan to Baltimore where I has surgery that was supposed to move the entrapped nerve and fix it. It did zero and cost me $25,000, NOT COVERED. I have had 4 different kind of blocks, none of which worked. I had DRG stimulation that disconnected fron the nerve before I even got in recovery room. I have been to every kind of doctor who works in this area with zero results. I'm now going to try DRG stim again but he will place 3 leads and he is hoping one or 2 will stay connected. If this does not work, I will kill myself. No other e way out.

REPLY
@clashganny

I fell in stairs that were not carpeted injuring my pudendal nerve Thanksgiving 2018. I have burning pain, like a hot poker up my buty 24/7. I sit on ice all day, can't go anywhere, basically housebound. I've been to 17 drs from New Hampshire to Boston to Manhattan to Baltimore where I has surgery that was supposed to move the entrapped nerve and fix it. It did zero and cost me $25,000, NOT COVERED. I have had 4 different kind of blocks, none of which worked. I had DRG stimulation that disconnected fron the nerve before I even got in recovery room. I have been to every kind of doctor who works in this area with zero results. I'm now going to try DRG stim again but he will place 3 leads and he is hoping one or 2 will stay connected. If this does not work, I will kill myself. No other e way out.

Jump to this post

I had this for 14 years and sat on a donut and cried a lot. Please try anti-seizure medicine. It worked in 2 weeks. My PT at the time told me she had heard it works. I believe it was Topamx. Ask!
Mikayla

REPLY
@clashganny

I fell in stairs that were not carpeted injuring my pudendal nerve Thanksgiving 2018. I have burning pain, like a hot poker up my buty 24/7. I sit on ice all day, can't go anywhere, basically housebound. I've been to 17 drs from New Hampshire to Boston to Manhattan to Baltimore where I has surgery that was supposed to move the entrapped nerve and fix it. It did zero and cost me $25,000, NOT COVERED. I have had 4 different kind of blocks, none of which worked. I had DRG stimulation that disconnected fron the nerve before I even got in recovery room. I have been to every kind of doctor who works in this area with zero results. I'm now going to try DRG stim again but he will place 3 leads and he is hoping one or 2 will stay connected. If this does not work, I will kill myself. No other e way out.

Jump to this post

Hi @clashganny, I can hear the desparation in your message. Living with constant burning pain must be near unbearable and you're at the end of your rope. I hope you have seen the multiple responses from several members to your first post. We're hear to offer support.

Click this link to see your first message and the replies from other members to you. https://connect.mayoclinic.org/comment/696005/

When will you have the DRG reconnected?

REPLY
@mikaylar

I had this for 14 years and sat on a donut and cried a lot. Please try anti-seizure medicine. It worked in 2 weeks. My PT at the time told me she had heard it works. I believe it was Topamx. Ask!
Mikayla

Jump to this post

Topamax (topiramate) works off label for migraines, so it may work for this. Good luck as this definitely is agony.

REPLY
@mikaylar

I had this for 14 years and sat on a donut and cried a lot. Please try anti-seizure medicine. It worked in 2 weeks. My PT at the time told me she had heard it works. I believe it was Topamx. Ask!
Mikayla

Jump to this post

I have tried anti seizure meds. I believe depacote. did not work. Nothing works, sucidal

REPLY
@pwgrimes

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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment