Health Organization for Pudendal Education

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. He also did a cystoscopy which was normal and saw the prostate was normal.

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. I avoid things that make the pain worse which seems to help a lot with PNE, such as sitting straight up on a chair without a pillow, walking far distances, lifting a lot, and I do not have sex very often at all. 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

Shawnmellis, welcome to the HOPE forum. Thanks for the detailed summary and sorry to hear of your troubles. I do want to let you know that recent work done by Dr. Potter at HSS in NYC has resulted in an MRI that can show entrapment(s) of the pudendal nerve. Dr. Hibner is working closely with her so they can also offer it with their radiologist in Phoenix which they are now doing but I do not know if they are getting the same results as Dr. Potter. There is also information that an MRN can also show problems with the pudendal nerve and there are threads on this forum that discuss the differences between the MRN and MRI. I do know so far any of us who have had a MRI with Dr. Potter and surgery, her results have been verified by surgery. This is a big advancement to start to help figure out where entrapments are and potentially the type of surgical approach one needs.

You might want to check out the different dr.'s on this website and the different surgical approaches as each one has limitations and advantages as to which part of the pudendal nerve that can be accessed.

You will be in my thoughts and prayers.

nYT,

How are you doing from your surgery w/ Dr. Hibner??? Do you still have the pain pump in place???

Best,

A's Mommy

Shawn, my name is Alan and live in California. I have the same symptoms that you have. Mine started from doing too many dips in the gym, then later pulling on springs of my daughter's trampoline while setting it up. Your blog caught my attention as I had the same urinary problems for about 2 weeks, some irritating sensations that I thought was urinary infection but was not. I have had tests done for prostate, have seen two urologists, one proctologist and finally a neurologist. The neurologist confirmed that I have some type of nerve damage but couldn't see any entrapment on the MRI. Have your symptoms improved? What doctors are you considering in France? If I don't have nerve entrapment then, can this heal on it's own? Thank you for any information. -Alan

Hi Alan,
Nerve entrapments or infact nerves themselves won't show up on the normal MRI scan. The imaging that can see the nerves is from radiologistr Hollis Potter in New York as NYT mentioned in the previous post. There is also nervemed MRN scan with Dr Filler in Santa Monica, nearer to you, but the concencus of opinion here seems to be that the 3 Telsa scan of Dr. Potters is the one to go for.
Some American surgeons have introduced newer techniques in PN surgery, so France is no longer the only option, take a look at the home pages on here for tons of info.
Take care,
Helen

Yes, this info helps. Thanks for posting it Shawn.

Tyro

Yes to answer your questions many people do get better here with careful avoidance for a while as their cause of pain is predominately muscular.
If you have no pain with many bodily functional operations and can avoid sitting and definitely using a bike then you stand a better chance than most of having less pain. Neuropathic pain presents in so many differing ways with stabbing, prickling, tingling and hot and more often cold sensations without any reason. Lets hope that with avoidance you can manage your symptoms and that they will subside soon.

I read your summary with great interest. I too, have PN. I am taking Gabapentin 600 mg four times per day. I sometimes use the Klonopin the doctor prescribed and it does help, but I do not use it unless I am going crazy with pain or if I have to be around anyone except my husband. I have tried opioid pain medication, but it did not work for me, as you know it does not seem to help neuropathic pain. That was just a try from my pain physician. I tried it more than once. Nothing.
I have tried various types of therapy's. Injections...many! pelvic floor therapy, the stem cell allograft by Dr. Jarnagin, and early on a coccyexectomy, and an SI joint fusion. I try to walk daily about 20 minutes, and do exercises. None of this has helped. I have had this debilitating condition about 12 years. I do not know what I can do other than pray that one day something can be done to help.
Is there anything else you are able to advise. I hurt so bad!

Gretel

Did dr jarnagin have any answers as to why the allograft injection did not work for you? Does he plan to repeat the injection or have any other injections?

Gretel, I just posted about my unsuccessful allograft injection with Dr. J. It is so discouraging! I am going on 3 years now, and I just hope and pray that we can all be truly helped in the near future:)
God Bless, Anne