Inflammatory Neuropathies: make the diagnosis

#41

Well said. SO TRUE!

#42

venceremos, how was your intra-prostatic inflammation discovered exactly? What tests where performed to find this?

#43

Wisdom!

#44

This is the key phrase here. People STILL trust doctors and the commercial scientific process too much here.

PubMed:Why Most Published Research Findings Are False
ncbi.nlm.nih.gov/pmc/articles/PMC1182327/

#45

Ive said this recently in the prostatitis thread and also in boston332’s thread I beleive.

At Institut fournier in Paris, where urologists and radiologists specialist in STDs prostatitis etc work, they did :

  • Trans-rectal ultrasound + color doppler of the prostate = immediately found prostatitis with the US (hypoechogenic “spot” on the left lobe), confirmed inflammation with the doppler

-4 glass stamey maers test (actually a simplified version, they do 3 glasses at institut fournier)
= 1 sample of urine, “first stream” = 1st glass : to identify potential urethral bacteria
then another sample of urine “2nd stream” = 2nd glass : to check for bladder bacteria and count leucocytes in the urine
then a prostate massage
if expressed, the prostatic fluid is put in a glass and then you urinate in that same glass (for the last time) (the stamey procedure separates the prostatic fluid and post-prostatic massage urine in different glasses)

The urologist that did the massage found that a spot in the left lobe of my prostate felt harder to the touch and that spot did feel more tender to me.

The results of the urine cultures shows significantly increased leucocytes (=inflammation) in the post-prostatic massage fluid.
They check for an impressive array of pathogens and none was found. They have their own lab too, specialized in STDs etc…
Conclusion = “chronic abacterial prostatitis”

I beleive they found some colonies of staphylococcus coagulans (?) in JG’s post-prostatic massage urine.

#46

Ok, so both TRUS + colour doppler and stamey test found problems. I need to get similar tests done.

I have lost some sensation in my scalp too and i am wondering why - obviously its quite far away from my pudenal nerve. With “significantly increased leucocytes” does this necessarily mean inflammation at all? Why not an autoimmune reaction (without inflammation) causing numbness?

#47

Increased leucocytes in post-prostatic massage urine do mean inflammation, autoimmune prostatitis is a posibility and is an inflammatory disease. Please check my latest posts in the “Kos” prostatitis thread. Read the FAQ by Dr Shoskes that i put a link to or at least the part I quoted. Also look for for “autoimmune prostatitis” articles on pubmed, and “estradiol / or estrogen prostatitis” articles too.

“Numbness” caused by prostatitis seems actually unlikely to most urologists and the pudendal nerve specialist : the nerves responsible for this (branches of the pudendal nerve) ore too far away from the prostate, so unless you have a seriously enlarged prostate (mine isnt), a solely intra-prostatic inflammation should not cause numbness or (directly) ED. Off course prostatitis is correlated with ED (many papers mention this too) but its most likely because of the pain involved.

Let me be more clear about the nature of the neuropathy causing ED and numbness :
The observed “inflammatory neuropathy” is not a direct inflammation of the nerves, but an inflammation of the tissues surrounding the nerves in the pelvic area and thus compressing them, leading to a form of entrapment syndrome. Its isnt a direct toxic neuropathy (like what I got at all extremities from the neurotoxic quinolones, and I am already almost fully recovered) but a “compressive neuropathy”. In blasé’s case (recently PFS’d), the compression is very focal, located a a very precise spot on the way of the pudendal nerve trajectory, in longer standing cases such as me, JG, Claro… the compression/inflammation is more diffuse, all along the nerves trajectory.
The doppler is what allows to see this and it does show that COMPRESSION of the nerve is the cause of the neuropathy (The blood flow in vessels along the pudendal nerve is impaired at the spots where compression is observed because they are being compressed by the inflammed tissues surrounding them. The inflammation/compression can be focal (blasé) or more diffuse (me, JG, Claro))

#48

Your someone concerned with the truth so let me just recap.

  1. The specialists have said only a seriously enlarged prostate could cause this neuropathy. Which you dont have. Therefore prostatitis is discounted as the root cause of your problem.

  2. But these specialists have detected impaired blood flow around the pudendal nerve (this is an important test to get!). And therefore it must be the pudendal nerve that is causing ED/Numbness.

  3. This only be caused by compression due to inflammation. But can this ‘impairment’ be caused by anything else (like apoptosis etc)? To me that seems an important thing to determine.

#49

They said that only a VERY seriously enlarged prostate could cause a compression of the pudendal nerve.
MY pudendal neuropathy shows compression of branches of the nerve that are far away from the prostate. The prostate cannot possibly be involved in that compression.
Prostatitis is thus discounted as the root cause of ED and NUMBNESS. I have other issues that are more likely the direct result of prostatitis : impaired ejaculation (no “squirt power”) and abnormal semen, occasional urinary flow issues (they were rare and recently seem to have disappeared), and occasional, unmistakable (for someone that had daily prostate massages for a month) direct prostate pains. Both pudendal neuropathy and prostatitis can give very similar, overlapping symptoms of pelvic pains.

Its not exactly impaired blood flow (although it also means this) that is observed but narrowing of the vessels due to compression.
BTW the angiologist specialist (they work in tandem) also said this is the cause of my hemorrhoids (impaired venous backflow). I recently got reappearance of hemmorhoids, I havent always had tham during PFS but I once had them (during PFS, at my worse actually) long before having any pelvic pain(prostatitis?). I often had blood in stools too (not occult) which also can mean “internal” presence of externally “invisible” hemorrhoids.

I think I understand that the compression of the nerves is an observed FACT. Inflammation of the surrounding tissues is the most likely explanation given by the specialist (and they do use corticoids with success to treat most similar cases). There is no reason to beleive that apoptosis or anything else would be the cause of the impairment of the nervous signal when compression is observed by echo-doppler precisely on the nerves that the EMG+ESSP showed impaired signal from. Like we said the diagnosis is 2 fold : EMG+SSEP by one doc, pelvic echo-doppler by his colleague. The combination of both tests is what leads to the final diagnosis of “(inflammatory) compressive pudendal neuropathy”, this is a lousy english ranslation of course.

#50

I may have to precise that the observation of the apparent correlation between time on PFS / size of pudendal nerve compression area is mine and not from the docs. Its probably too early to tell that there is indeed a correlation and that this isnt mere coincidence.
Also the conclusions on the symptoms deriving specifically from prostatitis are mine (based on what Ive learned comparing my symptoms with other prostatitis patients online and in real life, and what some uros have told me) , not the pudendal specialists’.

#51

Are you talking about someone elses results, like blase’s ‘oedema’ post when you say “compression is observed by echo-doppler precisely on the nerves that the EMG+ESSP showed impaired signal from”? I dont know how much weight we give this when we already know these symptoms cannot be caused by the prostate - unless it is VERY enlarged.

Here is a link to pudendalhope.org a website. Its like Propeciahelp for those with pudendal neuropathy (link posted before). As you can see the symptoms are usually different and the symptoms vary between individuals - unlike here.

I think what has happened to the nerves is worth exploring, beyond what seems to be an assumption of compression by inflammation neuropathy. Either way the tests in this thread are good solid objective tests that everyone needs to get.

#52

No, ALL of the PFSers results.

I dont understand this sentence at all. The prostate would have to be very enlarged because the relevant nerves are far away from it (if a normal size). The diagnosis shows what is most probably inflammation of tissues in the pelvic area.

Symptoms vary quite a lot between individuals here too I think. Also these ppl havent taken a DHT-inhibiting drug (DHT-dependent tissues are mostly in the pelvic area), most of these cases are from direct injury or cumulative compressive damage-related (think cyclist). I beleive the neuropathy observed by the docs in us is different than their usual cases. But we have to meet them again to clarify a lot of things.

Again, the “compression” is not an assumption if Im correct. The inflammation is.

I may add this is the only solid proof of sexual damage we have (unless you’ve done the penile biopsy, maybe?). I can tell you it changes EVERYTHING when talking to other doctors about your problem. Plus of course, there’s another interest in having a PROOF of physical damage.

#53

I hadnt checked that pudendalhope.com forum. The “symptoms” description is indeed different than what most here experience. Most of the PFSers diagnosed by the docs do NOT have the kind of pain described by the website as the predominant symptoms, if any pain at all (personally I started having these pains years after I had ED). ED (and degrees of numbness) is the absolute common denominator and we are all positive for the test. There has been established norms (large control group of healthy males) if you cared to ask, and we (7 out of 7 PFSers) all show abnormal results. So we may have a different form of pudendal neuropathy, probably. As I said things will be clarifyed soon.

#54

Not to mention the fact that a number of symptoms described on this website are not sexual symptoms. Anyway, if you somehow it is possible can clarify things do it! could all the results equally be due to to small fiber neuropathy for example?

I hope to get my nerves tested to - and then get them to test my scalp!

#55

It is obvious that directly “repairing” the pudendal neuropathy only will not cure “PFS” but only the sexual symptoms : ED, numbness, and pelvic pains + other stuff like hemorrhoids… (Which would be fine for me as these are the only remaining typical PFS symptoms I have now). But looking for the exact cause of the inflammatory neuropathy (autoimmunity? some candidiasis? something else?) could possibly lead us to the cause of “persisting PFS”, and treating it could possibly adress most if not all of the PFS symptoms with maybe a little help to push the body back to homeostasis (some kind of “PCT”) if needed once the root cause has been removed.
I’m saying “persistent PFS” because in my mind (this is less worthy speculation-land here) most people would be expected to present sides from 5AR inhibition while on fin and some time after that but the body should normally relatively quickly bounce back to homeostasis like it’s supposed to. Maybe “something” happened that prevented the body to return to homeostasis, induced that pelvic inflammation (–>pudendal neuropathy, shrinkage, (in some cases) prostatitis–>persisting 5AR impairment) to settle in, also induced persitence or exacerbation of symptoms like brain fog etc, maybe induced CFS, adrenal fatigue, maybe that “something” even worsened when DHT returned if it did… (Here’s where I got the “prostatitis–>reduced 5AR activity” story from : viewtopic.php?p=53662#p53662)

But you’re tempting me to get into speculation-land when nothing is clear yet at all…
My point is that it’s interesting (even urgent) to further investigate the pudendal neuropathy track not only because it can help us adress major symptoms, but also because it could possibly lead us to to a global cure.

#56

Is anyone treating this? When can we expect to know if your symptoms have been alleviated?

#57

The standard treatment for such a neuropathy is corticosteroids / immunosuppressants (prednisone, dexamethasone). I’m not aware of anyone as yet willing to risk making the condition worse by allowing a potentially infectious source of the detected inflamed tissue spread.

Dexamethasone, for example is what crashed JG after a year of recovery from using Tamoxifen. Tamoxifen, incidentally, in addition to being an anti-estrogen, is a potent antifungal.

If I lived in Europe, or had the means to travel to France right now, I would definitely visit the doctors that have been diagnosing this neuropathy in PFS patients (7 for 7 and counting…). If you’re interested, you should PM Blase, JG or Venceremos who are in close touch with these doctors.

#58

Pardon me: JG reminded me that he had three years of recovery before a doctor did a dexamethasone suppression test which ended up crashing him back into PFS.

#59

Just wanted to throw out two ideas to consider in treating potential/suspected pudendal nerve inflammation + edema:

1) Anti-inflammatory supps like Thorne Research Meriva-SR - a curcumin-based supp (Turmeric extract). One doc had previously told me that this was stronger than many prescription anti-inflammatories. It’s not immuno-suppressant, which is a positive. “Curcumin complexed with phosphatidylcholine for superior bioavailability”
thorne.com/Products/Musculoskeletal-Health/prd~SF775.jsp

In the context of a foundational anti-inflammatory diet rich in wild caught fish and patured/grass-fed animals (ie. low Omega 6 intake: no grains, no vegetable oils, no processed junk vs. trying to supplement with Omega 3 pills and thus increasing overall unstable polyunsaturated fatty acid intake)

2) Acupuncture - with the specific focus on the pudendal nerve? I don’t know much about acupuncture, but I’m investigating…

#60

I was recently diagnosed with pudendal neuropathy. It seems as though this is a symptom rather than a cause. I say this because I went off of T-therapy three weeks ago. The pain in my prostate area has come back as has the rash above my lip. This tells me two things. 1. It is lowered T levels that are causing the pain and rash. 2. My body was reacting positively to the T-therapy. 3. My body is not completely accepting the testosterone injections as I still have PFS symptoms with the T replacement i.e. numbness, low libido, ED. It seems clear to me that the lowered T and/or ability of the body to accept/interpret testosterone may be the cause of all of our problems. The mystery to me is why the body is making less T on it’s own (as is the case for most of us with PFS) and why the body is having trouble accepting the T that is is making (or the T from an outside source-i.e. Testosterone injections). I’m betting there is some feedback kind of feedback loop like in diabetes.
I’m going to stay off of T for another month or so and see what happens. I can feel my body starting to produce its own again and I like having my balls back-call me sentimental.