My entire history is in my profile, I suffer syntoms referred to pudendal neuralgia: chronic pelvic contracture often with burning character, uretral urinational burning and heavy sexual problems like anorgasmia.
I travelled in Italy in this 12 years to find a solution without results, I tried physical therapy, oral drugs, infiltrations, neuromodulation (at S3 and Alcock canal).
Recently I was in visit to Dr. Marc Possover in Zurigo that exluded peripheral nerve problems but wasn't able to help me too.
I have done many neurophysiological tests (last on 2016 that show some alteration in pudendal nerve conduction) and RM-neurography (showing only small asymmetria in pudendal nerve at Alcock canal and L5-S1 hernia with epidural fat obliteration).
I'm very afraid and depressed because syntoms worsened this year and I feel I have no chance to hope for a decent life.
I want to investigate more and contacted Rajeshree Nundall de Bisschop (Aubagne clinic, France), pudendal nerve entrapment specialist with her husband (dr. Eric de Bisschop). She told me that only way to have an accurate diagnosis is "Staged sacral reflex + pelvic ultrasounds".
Hi, so sorry to hear you've gone through so much and for so long and that you've have no answers.
I suffer from pelvic pain but not the same symptoms. I do have PN issues though.
Have you had any pelvic floor therapy? It's hard to find a good physical therapist but anyway, lots of things are connected to the pelvic floor. Sometimes, with having our pelvic floor contracted all the time, we cause other issues in the pelvic area. Maybe therapy there can help loosening up things? You will know if it helps or if it doesn't. Pelvic floor therapy for men and women is good I hear.
I am getting nerve (PN) blocks done and am on meds and also am doing physical therapy. It's a long process but trying things and seeing what works is good.
For first 6 years I doesn't feel pelvic floor contracture, only uretral burning.
When an urologist in Rome (dr. Guercini, 2010) made me to follow by his physical therapist (10 days endo-rectal massage/manipulations to find and release any trigger points) I had no benefit, he told me to continue by myself with some sex toys as "prostate massager" my syntoms worsened and I started to feel pelvic floor contracture.
The following year (2011) I went to a phisical therapist in Milano (dr.ssa Giraudo) that practice external pelvic floor manipulations and after two session she told me that there is an "irritating thorn" that make ineffective the physical threatment.
She send me to a Pudendal Neuralgia specialist to start medical threatment...
Also in my area there aren't pelvic floor specialists.
Someone continue to suggest me physical threatment and postural exercises but I am too discouraged and now negatively biased on this type of approach.
OK, I know what you mean. I've commented a few times today and said that I have seen many doctors who had no idea what was wrong with me, in their own specialty. It seemed that there was no room for me and my issues in their day or world. They need to run from patient to patient and if your issue can be managed under 5 minutes of consultation, then you're fine. If not, if you don't fit in that little box, they can't help you, they don't know and you have to leave.
There are a few compassionate doctors and therapists along the way. Yes, I have lost faith and trust in doctors but I do let a few I have found, help me in the way they can.
Sometimes, one condition not treated can lead to other issues. Could it be your bladder that is inflamed or infected? I have had this problem, and I have pain in other areas because of it...
If it is from a nerve, can you have nerve blocks done?
Are you doing any relaxation, meditation? I have to try that to try and not go crazy!
I would continue to see doctors. But I know what you mean, I also gave up when I had no energy left in me to go see another doctor. It's taking over your life. It's taken over mine.
Hoping someone with issues like yours will comment and help. It's good to find a support group. We can share our pain with others who get it and also knowledge. Good luck to you and keep posting!
Not sure if this will help but check out a link on this pelvic pain support network site, from Dr Ruth. Do a search for Dr Ruth. It's a video and it does touch on some areas you are having issues with. I can't post the link here and I'm not sure why.
But it can't hurt to try and relax the pelvic floor. If it's been tight, it might make some nerves do some things causing you pain. Sometimes you don't realize it until someone shows you how tight you were.
Keep looking for answers. Think to see if you had an accident, surgery, a fall that explains this and talk to a new doctor about this. Keep doing research, you shouldn't give up on feel better and enjoying life again more than you are now! I know it's hard, I'm dealing with it too. Sometimes, you just need one internet link, one phone number, one support group, one doctor's office, and you're on your way to a plan to get better. Do it at your pace.
Thank you for your hints, I haven't tried relaxation or meditation, I'm a bit pessimistic about this approach.
In the first years many urologist threated my syntoms as non-bacterical prostatitis without results.
I had nerve blocks (with EMG guide) on Alcock canal and sacral roots, also I tried botox, but in my situaton at the time was very difficult to evaluate it.
At rest I usually had only tight pelvic floor without "pain" and the blocks doesn't had effect on contracture...
Now contrature has worsened and assume burning pain character in some occasions but I can't do a nerve block at any time of the day...
In the last attempt I tried to urinate after the block and I had sensation of less uretral burning intensity but it wasn't judged sufficient to make a precise diagnosis.
Really sorry to hear this. I am compasionate with you. I have similar problems, but I have sexual problems too. No erections, no sensation to the penis, and perineum, pelvic, genital and gluteal pain, pressure, stabbing, electrical sensations and so on. I came across to this website: ainsworthinstitute.com/conditions/pelvic-pain/
Ganglion of Impar Block gives me some hope. Did you tried this or something similar to this? You can try that if you didn't, maybe it helps. God I would give everything just to numb my areas of pain and to continue my life, but still, I didn't found a solution. Sometimes i think that this thing is worse than cancer and HIV sufferes. God bless you my friend.
Research about it, maybe it would help you a lot. I don't have that diagnosis, but I have some similar symptoms. Mine are more like chronic prostatitis and urethritis and chronic pelvic pain syndrome. Often, doctors misdiagnose our conditions and we are treated wrong. I am from Croatia, I've been to several doctors here and nobody helped me. I even wanted to go to meet Federico Guercini but I found out that it is too expensive and poorly effective treatment for my problems.
I was threated by Guercini in two occasions without results: first with a "dilatan termo-cones" therapy in 2006 (hot cones -> anal application) and the second in 2010 with endo-rectal manipulation threatment made by his phisycal therapist, already discussed in my first answer to littleonefr1.
I suggest you to search for a Pudendal Neuralgia (PN) big specialist like Bautrant, De Bisschop (France) or Beco (Belgium). Prostatitis/CPPS was mine first diagnosis too but it is often indistinguishable from PN.
I had not sitting problems in the past, only last year on unfavorable surfaces. not problems on lying down.
My symptoms get worse in sit on convex surfaces or saddles and standing for long time.
I know that mine it's not the "Classic" Pudendal Neuralgia but neurofisioloical tests confirm some abnormalities in pudendal nerve conduction and I read that syntoms can vary depending on the location of nerve damage. The location can be in pheriferic position or more central (also L5-S1 hernia can cause problems on pudendal intraspinal roots)
Actually, I had a EVP (Evoked potentials) test for pudendal nerve. The test includes electrical stimulation of the nerve with electrode and a ring attached around your penis. The test stimulates the nerve, and if it responds, you don't have pudendal neuralgia. My test was good and they excluded that I have a problem with that nerve. Did you had that test? And my symptoms appeared after an UTI with chlamydia, that infection caused this nightmare.
Yes, EVP is part of what I mean with "neurofisioloical tests" (I have done it in Milano with dr Malaguti in 2016).
I have some abnormality in nerve conduction but this is insufficient to locate the problem.
I think that EVP only can be insufficient to exclude a pudendal neuralgia, I have done also test like autonomic perineal muscles tests (CNEMG) and motor latency test (PNTML).
An advanced test that I want to do in next days is "Staged sacral reflex and pelvic ultrasound" with dr. Rajeshree Nundall and Eric de Bisschop in Aubagne (France). They say that this is the only way to locate precisely an ipotetic nerve damage or entrapment.
In my first post you can find the link of the relative article.
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