Confused. Very confused.

[alexm]

Hello all,
I must admit that I am very confused. I have been suffering on and off since 2005. I have had two electromyograms, both of which confirmed a bilateral problem with my pudendal nerves. The cortisone injections helped for a few weeks but I’m still here wondering what is causing my pain.
Does anyone have a checklist of exams that should be done on order to eliminate such things as hernia, labral tears, varicose veins, cysts, scar tissue, and muscle tightness? I really don’t know where to turn next. I had a small gernia L S1 which dissappeard in 2007. Could all these questions be answered by a trip to Doctor Potter in NY? How would my nerves reach to the flight?
I have been trying to set-up an IRM 3T in France (there a loads of machines) but it is a hard slog. Does anyone know if Dr Potter can be reached by phone? I would love to ask her if she would be willing to liaise with a radiologist here.
All comments would be welcome,
Al

[janetm2]

Not sure if all those things would show up on the MRI but some may. Muscle tightness I would think would best be sorted out by a physical therapist or physiotherapist. I would go to one of them while you sort out the MRI as they may be able to help with possible muscle spasms as well or other tightness or ligament and pelvic floor problems.
Janet

[alexm]

Thanks Janet,
I'm still trying to find a PT in my area who knows how to treat PN. I have found an osteopath but all those manip's have put the frightners on me...
Al

[janetm2]

Al, I just checked the home page FAQs and question 6 about diagnosing PN also states what tests to have to rule out other things. FYI the FAQs have a wealth of other info that may also help you.
Janet

[Lernica]

Welcome to the "silo" approach to healthcare! My experience is that you have to tackle each possible pain generator yourself, one-by-one, by going to different specialists and asking each of them to help you rule out each possible condition. For instance, I have been to a hernia surgeon to rule out hernia injury; a GI specialist to rule out bowel disease; a neurologist/pain doctor (who diagnosed PN based on symptoms alone); a gynecologist to rule out gyno disease; and a hip preservation orthopaedic surgeon to confirm hip pathology.

PN is like an orphan disease: no specialist seems to want to take ownership of it since it crosses so many different boundaries of medical specialties. YOU have to be the manager of your care, diagnosis and treatment, since you are the only person with a vested interest in getting better. In other words, consider yourself to be the general contractor and your doctors to be your "trades" in a project to restore your good health.

Good luck!

[Elise]

I couldn't agree with you more about being an advocate in your own healthcare. I have also been through a lot of doctors which range from urology to rule out stones, general surgeon to rule out sports hernias, at least 3 different physical therapists, 2 orthopedic doctors for bony abonormalities, sports medicine doctor to rule out ilioinguinal nerve issues, and a chiropractor. On top of all of this i have had 4 steroid injections to rule out other things. I have finally narrowed it down by all of these different doctor visits that perhaps it is pudendal nerve issues. In addition to visiting all of these doctors, I have had all diagnostic imaging studies under the sun (CT scan, nuclear medicine, ultrasounds, x-rays, etc which have all proven negative for any pathology). It has been almost two years of suffering with this and I hope to find a breakthrough soon in the future.

[helenlegs 11]

Hi Elise,
Welcome to Hope
I am often amazed when people come along and HAVE been diagnosed with PN, some within 1 year! Of course they have had to become their own advocate too and probably done tons of research, I can't think they were just 'lucky' but if so they should keep the lottery up too
What is your next step in your particular 'silo' approach to pelvic healthcare as Lernica aptly put it? Have your physical therapists been PN aware at all and did they find anything that could be a cause? I think that pelvic floor muscle tightness always needs to be examined for instance. Maybe we should have a check list for differential diagnoses that can be checked, some of them fairly easily checked and ruled in or out. The trouble is that list seems to keep on growing as people discover their own pathology.
In contrast my problem has been very easy to detect, I can identify the exact problem area (piriformis) my difficulty has been getting people to recognise the problem and then treat it of course. It has taken 5 years but at last I am getting somewhere locally now although I have been waiting some time (what's new?) for a letter from my new(ish) pain consultant as to a next step for treatment.
Have you got medication for nerve pain at all?
Take care,
Helen

[Elise]

Hello Helen,
How were you diagnosed? I am currently waiting to get a magnetic reasonance neuro study (it is more sensitive than MRI) so I have read online. Also, I've been referred to a pain management clinic so hopefully a concrete diagnosis will be made at that point! I have not encountered too many physicians with experience with pudendal nerve issues. Hopefully I get some answers so I can educate others that are suffering and are lacking a diagnosis.

Thank you for responding

[helenlegs 11]

Hi Elise,
I had to go through the same route a you seem to be currently travelling. It took AGES!, but I wouldn't say that my tale is totally typical . I managed to get lumbared (play on words, not that funny, but apt ) with a spinal diagnosis for my current problem, as I'd had a lumbar (S1/L5) hearniation and subsequent successful spinal op in the past, So I had this huge obstacle to climb to even get them to look at my pelvis. They just didn't want to know at all. As far as the medical community were concerned it was by back, with no nerve impingement on MRI, so not even that bad a back at that!
I had The MRN although it was just a 1T as nothing else existed then in the UK (English) but it did show pudendal nerve intensity on right side. I then saw Dr Filler who came to London for a clinic. He was the first person who actually knew what I was talking about and took me seriously.
He diagnosed 'a complex variant of a piriformis syndrome with sciatic,pudendal and superior gluteal nerve involvement' as he viewed my MRN and did a clinical examination (no internal tho') However I don't have a problem with pelvic floor muscles as many (most?) people do have.
I thought that this would be all I would need, I had my diagnosis, the holy grail. . . but no! Why should 'they' believe an American! It was ridiculous! In the end I found an English pain consultant who agreed with Dr Filler' diagnosis and he treated me.
I really think that this is the denominator in the diagnostic equation, find a clinician who is Pelvic nerve aware. This is usually a doctor, as in England anyway, physiotherapists (PT's) opinions, even if they (PT) are correct, are 'trumped' by a doctor's opinion, even if they(dr) are wrong.
Scans are OK if they find some thing to explain the pain but often they don't; a hands on clinical diagnosis by someone who knows about pelvic nerves is the best way to get a diagnosis in my opinion. This may change as imaging improves. The other important thing to mention is that PT's are often much more PN aware than many doctors. A good amount if people here were given an indication or diagnosis by a physio initially. In France however you have the Nantes team and others who are very proficient at a clinical diagnosis (in Belgium too)
Many people choose imaging to try and find out where the problem may lie, but again, not always successfully.
There is a list of physicians who are PN aware on the home page here btw.
Because the problem is so misunderstood in many places, I still had/have to fight to get treatment even with my 2 diagnoses, as I have a GP who isn't any help and I have to go thru' our NHS now (free, at the point of need Ha!!)
However I have recently had a nerve conduction test (sciatic) which showed 'entrapment' (still not sure of figures and if 'entrapment' can be diagnosed from these tests?? but that's what I was told verbally. Still waiting for the report, a month later, I rang yesterday and it isn't typed yet , UGH! A following MRI of my spine ruled out a problem there, so in the words of the local pain consultant I have nerve 'entrapment in my pelvis'. . . . I said 'I know'. . . . .This is all 5 years on from a fall and almost 3 years after my correct diagnoses (Filler and Greensalde) but it seemed that even locally they did not 'get it'. Hopefully they do now.
I still don't really see why my diagnosed problem had then to be 'proved' before they would decide to treat me locally, or indeed at all, but there you go. . . .
I am probably a good example of pitfalls along the way in getting a correct diagnosis Bet you wished you had never asked
Don't worry people here have been through it all so will be able to guide you properly through the pelvic pain maze.
Take care,
Helen