Health Organization for Pudendal Education

I was just recently diagnosed with pudendal neuralgia. I am on gabapentin and it helps the vaginal pain but my buttocks and coccyx are a major issue. Does anyone else have this problem? And how do you travel?

Hello Daisy

Cant relate to that pain - but laying on my coccyx makes my pudendalnerve worse. So when i lay and bend my knees, i got a little pressure on my coccyx which leads to extreme prickling or pain.

About traveling - I don't travel that much. 1 year ago i couldn't even drive a few minutes, now it is possible without greater pain to drive like 20 mins.

About medics - I get the same, Gabapentin but on maximal dose - 3600mg / day. And i also get Saroten which are Antidepressants who got a second feature - Chronic pain.

Greets

Daisy wrote:I was just recently diagnosed with pudendal neuralgia. I am on gabapentin and it helps the vaginal pain but my buttocks and coccyx are a major issue. Does anyone else have this problem? And how do you travel?

I used to have that problem. For quite a few years I traveled in the car lying down in the back seat. Slowly over time after my PNE surgery the pain subsided and with some PT and prolotherapy I am doing well now. I recently took a road trip and was able to sit all day in the car. Airplane travel isn't a problem anymore either. I used to try to get several seats across on the airplane so I could lie down but airplane travel is so crowded anymore I think you would have to purchase extra seats if you would be allowed to.

Have you tried any PT to get the muscle pain in the buttock area worked out?

Violet

Thank you Violet. I diagnosed my own condition through research and was confirmed by my
Gynecologist that I do intact have Pundendal Neuralgia. But long ways to go. Starting PT with pelvic floor physiotherapist and going to Cleveland Clinic in June. Not sure yet if PNE or just PN. Not sure how this developed but was a very active person all my life.I'm so happy to be a part of this forum. This has changed both my husband and mine's life. Was just about to retire and travel. I'm determined to live my life and do these things but I know they won't be easy.

Hi Daisy,

I'm sorry this is affecting your retirement. I completely understand the huge life change brought on by PN/PNE but hopefully with the proper treatments you will be able to enjoy your retirement. Is there a particular specialist at the Cleveland Clinic you are planning to see?

Violet

I will be seeing a Dr. Mark Walters at the Cleven clinic. Apparently he is very familiar with pudendal neralgia and a very good doctor. I'm happy we are only an hour away from this outstanding medical facility and very grateful. Do you know anything about him? I'm hoping pelvic floor physical therapy can help release perhaps the pinched or entrapped nerve. I'm just not sure yet what is really the case. But I do know the gabapentin is helping and I'm approaching this with a positive attitude. I don't think my pain is as intense as other people on this forum so I'm not really sure if this nerve is entrapped. How can you tell if a nerve is entrapped or just pinched or hypersensitive is there anyway?

Let us know what dr Walters suggests for you.

I have not heard of Dr. Walters. I was just looking at the Cleveland Clinic website and noticing what he specializes in and what he treats. https://my.clevelandclinic.org/staff/724-mark-walters
I don't see pudendal neuralgia (PN) on the list -- not sure what that means, but it sounds like you have done your homework and checked into what he treats so I hope he will be able to help you.

Daisy wrote:How can you tell if a nerve is entrapped or just pinched or hypersensitive is there anyway?

That is the six million dollar question when it comes to pudendal neuralgia. It can be very difficult to tell if the nerve is entrapped, and that is why many people seek conservative treatments before even thinking about a surgical option. The Nantes team published a paper discussing what they view are the signs of a likely entrapment. http://www.pudendalhope.info/sites/defa ... iteria.pdf
I did not fit all of that criteria exactly -- especially the conclusion that an entrapment doesn't wake you up from sleep. I had nerve shocks that woke me up from sleep.

That is good news that your symptoms aren't severe. Good luck with physical therapy. That is often a good place to start with treatment and some people have good success with it.

Violet

Hi Violet,
I saw the same thing with Dr. Walters but my Gynecologist who actually diagnosed my condition studied under him at the Cleveland Clinic and said he is well versed in this subject. He may not be able to treat me but they work as a team there and I think I will probably end up with seeing several specialists in Neurology.....I hope. My biggest complaint is I wake up every night with buttocks and lower back pain. This is such a tough journey!

Hi Daisy,

Hopefully Dr. Walters will at least be able to point you in the right direction. With your history of low back pain you might want to get the SI joints checked out. I think you said you would be seeing a pelvic floor PT. They should be able to check whether you have any pelvic instability or SI joint problems.

Violet