pudendal nerve entrapment (!HeLp!)

[ffletch]

I feel certain this may be what im looking at. Everyone whi knows my testicular/groin problem doc.s family etc says this PNE hits the nail on the head.Now what?Their is no doctor that I have run across that is that familiar,or has ever herd of.Other than the ones on internet in france or houston tx.(that can do nerve cut)apperently the surgon cant be off a milameter.Its nice to maby after 7 years to have found the problem but I feel kind of sad.But I wont get into that.If anybody knows a doctor who might can listen or help in southeastern TN. please let me know.Im 1.5 hr. from atlanta/nashville/knoxville.If you read about PNE and knew my chronic testicular pain you would see my urgancy.My pain has recently skyrocketed, my legs dont want to walk but it hurts worse to sit.Job and family (my life) is almost unbarable.I in the past week went from avinza 90 to 120 and not much help.Thanks and God Bless!

[zanne65]

how do you get diagnosed with this...I think I have this...what kind of dr would I go to.  I also have IC.  Please give me any info you can.  

Thanks,
Sue

[helpinneed994]

I have been suffering for 13 to 14 years with the pain on my both buttocks, all my waist and pelvis areas. It gets worst with sitting, bowl movement and sex if I get it up. I am not sure pudendal affects the premature ejaculation. I am taking neurontin and Lyrica but it doesn't do a thing. Physical therapy  don't help. All the Doctors don't seem they have any idea about pudendal neuralgia or they don't want to deal with it. All the MRI, CT scans don't show any abnormalities except that I had L5s1 blog disc. I did surgery but didn't help. Now again I am doing physical therapy but I don't know what else to do. Any suggestions will help please thank you.

[cookie0319]

Hi, newbie here. I have been dx'd with Pudendal nerve entrapment and interstitial cystitis. I have had the gamut of tests and procedures. I went to Houston back in 2002. I had the nerve block in the Alcock canal done, PNMLT (motor latency tests)and Doc Renney's eval done. I was a candidate for surgery and had it done. I was one of the earliest patients and the surgery was considered controversial then because of limited surgical outcomes. I am 30% better. The nerve is not cut, it's the sacrotuberous and sacrospinous ligaments that are cut to free up the nerve. Somewhat like carpal tunnel surgery. They are very thorough in Houston and I think some of the best we have in the US. I think you need to get an accurate diagnosis, like others have suggested. If you can do the phone consults with Renney, that may be the start. This is a very complicated disorder and different of course, for women than men. Pain managment techniques combined with meds and any other therapies that you can pursue once you have this nailed down. I have to say for most, there is not quick fix and it takes a combination of things. Try to keep your anxiety and stress to a minimum and know that the answer is out there. Sit as little as possible. I still have alot of pain but  have learned how to deal with it better. Kara

[empathy323]

I know you feel hopeless right now.  I recommend making an apt. with an urologist this gives you a place to start.  There isn’t a “male” specialist so you start with a GP and then move on to a specialist closest to the part of the body you are having trouble with. They have gone to all of the extra schooling to become a specialist.  Make an apt. go in start at the beginning and tell your story as well as your fears.  The doctor can take it from there as far as treating, testing or making referrals for you.  Try to breathe and take things one step at a time.  I am not saying you don't have every right to worry but sometimes we get ourselves more worked up than we need to be.  Sometimes we need to try and take a step back breathe make ourselves a plan and follow it one thing at a time so we are not as overwhelmed.  Make an apt. and I would stay off the internet to a certain extent until your evaluated from the sounds of your post you are doing nothing but getting worked up from it.  I know like I said that it is hard but try to wait until you have seen a doctor and get a diagnosis.  Good luck and keep your chin up

[Tuckamore]

Hello Again,

You have probably found the same web sites that I have. Several suggested PT may help releive the pain. I would start there if it hasn't been tried since your new diagnosises.

Have you tried Corticord treatments?  Alcock canal infiltration with corticosteroids is a minimally invasive technique which allows for pain relief and could be tried when physical therapy has failed and before surgery.

Surgical procedures are done is the US. I copied the following from a site I found. It is the last resort. Please see beleow.
Decompression surgery is done primarily in Nantes, France, Aix-en-Provence, France, Oklahoma City, Oklahoma, www.urogynecologist.com,Phoenix, Arizona, Lake Elmo, Minnesota, Baltimore, MD, Santa Monica, CA, Houston, Texas, Switzerland, Belgium, Nashua, NH and in Egypt. The validity of decompression surgery as a treatment and the existence of entrapment as a cause of pelvic pain are controversial. While certain doctors will prescribe decompression surgery, others will not. Notably, in February 2003 the European Association of Urology in its Guidelines on Pelvic Pain said:

the reality is that pudendal nerve neuropathy is probably only a likely diagnosis if the pain is unilateral, has a burning quality and is exacerbated by unilateral rectal palpation of the ischial spine, and the pudendal motor latency is delayed on that side only. However, such cases account for only a small proportion of all those presenting with perineal pain and the proof of the diagnosis resting on relief of pain following decompression of the nerve in Alcock's canal is rarely achieved. The value of the clinical neurophysiological investigations is debatable; some centres in Europe claim that the investigations have great sensitivity (1,2), while other centres, which also have a specialized interest in pelvic floor neurophysiology, have not positively identified any cases.[1]
Three types of surgery have been done to decompress the pudendal nerve: transperineal, transgluteal and transichiorectal. The results on pain are very similar (around 60% of cure). Impotence, anal and urinary incontinence can also be cured by these procedures.

Don'r give up. Start with some pain rleif as I said in my earlier post. I will keep searching for anything else I can find. Hang in there. Your life is not over. We are always here for you. The best to you, Tuck

[Tuckamore]

I am so sorry for your pain Ffletch. And more bad news I don't know anyone in your area. I am not familiar with TN. Hopefully some of our other members will be able to help you in that area.

If Avinza is not working for you have they tries other meds? It is a morphine extended release drug. Morphine has never worked for me though I know it does for others. Nerve pain is very difficult to treat. There is a drug called Neurontin (Gabapentin) that treats nerve pain. I would ask my physician is you cannot try that or something similar along with a different pain reliever, at least until you are able to investigate further options. Just be open and honest with your physicain and explain you are obtaining no pain relief. You may be surprised that he/she will be willing to work with you until the right combination is discovered.

I am at least relieved that they have found the cause of your pain. I have heard of this condition before. I will do some research and see what I can find for you. I wish you the very best. Keep us posted. Take Care, Tuck