Hi, all. Need some help.

[make-it-stop]

Hi. I have what I believe is pudendal neuralgia. I was rear-ended by a car going 70mph while I was at a stop and have been suffering with neck and back pain, then sacroiliac joint pain, then various neurological symptoms, and now finally I have burning pain that follows the pathway of the pudendal nerve (I'm guessing the cause is my pelvic instability). I've spent the last couple of days reading through the info on this wonderful site and reading some posts. I have a lot more to learn, but at this point I am really exhausted and very depressed, and it's hard for me to do pretty much anything, including reading more info. I was wondering if someone would be so kind as to suggest what steps I should be taking. I read the flow on this site, but it seems like there are so many different tests, that I'm finding it all overwhelming. Should I first get a pudendal nerve block? Are there really only a few doctors in the country that do the pudendal block procedure? Any suggestions would be very much appreciated.

[Violet M]

Ouch! That must have been a dreadful shock to be rear-ended like that. I'm sorry you are having to deal with the aftermath of the injury.

What you decide to do really depends on whether you want to try to deal with the pelvic instability/musculoskeletal issues first and wait it out to see if that approach helps or if you want to go for a more invasive approach including some of the risks involved. What have you done so far to deal with pelvic instability -- are you working with any therapists?

Other things you might want to do would be to try to find someone in your area who can do a pelvic or rectal exam (depending whether you are a guy or a gal) to determine if you have tenderness along the course of the pudendal nerve. It would have to be someone who knows the pelvic floor anatomy well. Or you could try a 3T MRI by Dr. Hollis Potter who is sometimes able to determine if there is an impingement on the nerve. This could be kind of expensive if your insurance won't cover it or if you have to travel. Pudendal nerve blocks can be helpful with the diagnosis but some people have lasting pain increases from them and I've heard very few stories of people being cured by them (actually I should probably say zero stories).

There are probably a lot of docs not listed on this site who do nerve blocks but you probably want to look for someone who uses image guidance such as fluoroscopy, ultrasound, or CT scan.

I know it's confusing when you have a lot of different options and none of them are 100% guaranteed.. The thing about PN is there aren't any cookie cutter approaches that work for everyone so you kind of have to go with your instincts on what you think is right for you.

[make-it-stop]

Thanks, Violet. It looks like there is an imaging center in my area that has a 3T MRI machine. I'm across the country from Hollis Potter. Does Hollis Potter do something different in his MRIs of the pelvis that other doctors don't, such as positioning the body a certain way, using a certain contrast, or whatever? I'm so unfamiliar with radiology stuff. I guess what I'm asking is, assuming I'm able to use the 3T machine here for a pelvis MRI, would that work, too, or does Hollis Potter have a certain technique where it would be more beneficial to have it done with him? Thanks, Violet.

[Violet M]

Hollis Potter has a certain technique/software and some of the docs have been very impressed by the images she is able to come up with. That's tough if you are clear across the country. There's a radiologist in Phoenix getting some pretty good images although I've heard not as good as Potter's.

[make-it-stop]

Good to know. I'm actually supposed to be going to NYC at least once this summer for pre-business school stuff. Not sure anymore if I'll be able to make the trips or even school with this condition, but if It improves, maybe I can tack on a visit to Dr. Potter. Btw, forgot to answer your question about if I'm doing anything for the musculoskeletal issues. Yes, I definitely am, although it's been tough to keep the s.i. In place, even with a belt. I started wondering today also if my PN is actually being caused my a hypersensitized CNS, as I have the same type of nerve pain in the back of my head, my piriformis, and I get burning and other neuro sensations all over my body. Sounds like it is another underlying factor in some people with PN.

[Violet M]

You might want to read some of HerMajesty's posts on SI instability and the Hesch method. I have pelvic instability too -- unfortunately the SI belt didn't help because it pressed too much on the wrong places in the pelvic region. Also, my ligaments were chronically strained, hardened and sclerosed.

[make-it-stop]

Thanks, Violet. I've been in touch with her already--we live in the same city and have already met!

Okay, I've learned quite a bit over the last few days and am now ready to try to tackle this. Got my list of 8 possible causes, ways to control each underlying cause (one at a time, least invasive to most invasive, cheapest to most expensive), and I've ordered my ICN seat cushion and got my doctor's scripts for some meds in case all else fails. I'll let everyone know if I find anything interesting in the process.

[Violet M]

Good for you! You don't waste any time do you?!?! Hope one of your options works for you.

[Afton]

Hi all buddies Afton from U.S.A here at the forum me joining newly here at the forum,
Just want to say Hello to all the member's of the forum and also welcome
the new member's.... I hope that I have nice time spend here with all of you dude's having
chit chat with all of you.........

[shawnmellis]

Hi, I think this information I am giving here below will help you and many others out there sufferering from this horrible problem. Remember it will get better and managable and some of you may get totally healed of this as it can get better. I have had Pudendal Nerve Entrapment for almost 1 1/2 years. It is the most painful in the initial injury time. It took me several doctors, tests, and specialists to figure out what was wrong with me. Pudendal Nerve Entrapment or Pudendal Neuralgia is diagnosed by ruling everything else out usually and is a clinical diagnosis. You can get a pelvice mri, x ray, to see if there is any noticeable broken bones, or ligament damage, but even the best MRIs do not show an actual nerve entrapment, which can be caused by scar tissue compressing your pudendal nerve or your pudendal nerve being stretched or injury to your pudendal nerve. I am still not exactly sure how I got my Pudendal Nerve Entrapment. All I know is it started as either some sort of urinary tract infection or injury or stretching of something around the pudendal nerve because I had pain urinating at first and then a few weeks later had pain in the perineum area. They did a pelvic cat scan and saw nothing wrong. After months of antibiotics and tests and my painful urination got better they discontinued my antibiotics and ruled out that I no longer had any urinary tract infection, if in fact I ever had one, however my pain in the perineum and more frequent urination, and pain after sex continued. My urologist was able to figure out that whatever was going on was causing a spasm of the pelvice floor which caused the urgency to pee and he prescribed Diazepam or Valium which helped a lot with these problems.

My initial pudendal nerve entrapment got about 90 percent better within a month of being on this medication and avoiding sitting and putting pressure on my pudendal nerve. I also had to get in a good drinking liquid pattern. When this affects your urination as it did me, you have to be careful not to drink too much at one time, and not too small amount at one time, and make sure you get at least 3 or 4 cups of water a day untl your bladder and pelvice floor is not spasming so much and you are able to hold more urine at one time without the sever feeling of urinary urgency. This has been one of the problems with my PNE and probably others out there. Make sure you do not get dehydrated. You want to try to get to the point where you can hold your pee for at least 3 to 4 hours, but it may take awhile to get to that point. Make sure you do pee when you really have to. This was a hard part for me to overcome and get through, but the diazepam definitely helped. Skelaxin and other medication did not help,

Then, a few months later, when I was at the beach, I was sitting down in the water. Then I stood up against the current in the ocean and I felt a pain and a little snap in my pelvice floor region and the pain and urinary problems immediately came back. There is obviously a pelvic floor injury related problem causing some kind of pudendal nerve entrapment or neuralgia or both since this incident brought the pain back immediately.I finally got it diagnosed after I saw a sports medicine doctor or orthopedic speciallist in Concord, NC who was able to diagnose my condition as Pudendal Nerve Entrapment. We did a pelvic MRI and X Ray to also rule out anythihg else but he was able to diagnose me because all other tests were done and because all my symptoms made it easy to diagnose this problem, since it is really a clinical diagnosis. You can not see an actual pudendal nerve being entrapped by any test, so you have to go by the symptoms. My orthopedic sports medicine doctor ordered a cat scan guided pudendal nerve block, which injects steroids (anti-inflammatories) which does two things. First it helps with your pain in the pudendal nerve area within 3 to 4 days after the shot and lasts for 1 to 3 weeks or longer if you are lucky. It also is helpful in diagnosing that what you truly have is Pudendal Nerve Entrapment. If you are diagnosed with PNE, this should be one of the first things you should have done. It does not really hurt at all and is very quick to get this pudendal nerve block or steroid injections done there. You just have to have your doctor find a radiologist who has done this before to do it. I was lucky to have one in my area who has done it before. I'm not sure how many radiologists in the country have done it before. It may actually be a lot but I don't know.

I had 3 shots or nerve blocks and each one lasted 1 to 4 weeks as far as the pain down there. For me the best thing to use in my experience has been a really good pillow and not any of those donut cushions. I have tried all the different cushions and none work as good as my pillow. I take my pillow with me everywhere. I feel like a 3 year old who can't part with his pillow Since my reinjury at the beach about 10 months ago, I still have pudendal pain or Pudendal Nerve Entrapment but it is much better tha it was 10 months ago, when I reinjured my pelvice floor area at the beach. I now take diazepam (valium) which helps with the spasming and urgency feeling to pee and tramadol and ibuprofen and neurontin for the nerve pain and inflammation as needed when the pain and problems are worse.

My next step is to wait a little longer and search for a great surgeon to help with this. From what I have read and heard France, is the best place that surgically can help with this medical condition. I actually happened to talk to a doctor at an ER when my daughter had to go there and happened to mention to the doctor that I have PNE and he told me his best friends who was a doctor there had PNE and had to go to France to get surgery for it. If I don't get better, it may be my next option. Hope this information helps others out there.

If you or anybody else on this website has any questions about PNE feel free to send a post to me. I am happy to help and praying for us all to one day get better and for more doctors to become familiar with this medical conditiona and for surgery for this to be better and more widespread in the U.S instead of mainly France. Take care and God Bless, Never Ever Give Up! It does get better. It takes time for nerve injuries to heal