Pudendal Nerve Entrapment/Neuropathy/Damage

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?

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

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?

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.

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

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.

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

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?

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

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