Inflammatory Neuropathies: make the diagnosis

molybedenu · May 25, 2018, 7:06am

Tlecum:

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.

I also think it is a symptom, but I do not believe low testosterone is the cause. I have had my testosterone tested twice now, and I was top 1/3 the first time and over mid range the second. I believe low testosterone is yet another symptom, not the cause. Infact, I believe all hormonal fluctuations (which are all very inconsistent between individuals) are symptoms and not the cause.

To all of those diagnosed with pudendal neuropathy, what are you and your doctors doing to discover the source? How about a small biopsy of the surrounding inflamed area to check for fungal/bacterial infection? Please keep this thread updated; I believe the discovery of consistent inflammation in PFS suffers in a very big deal, and could very well lead us to the root cause of all this suffering!

Xhorndog · May 25, 2018, 7:06am

Tlecum:

venceremos:

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 [Size=4]candidiasis[/size]? 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 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.

Hmm…I could see how lack of DHT would inhibit myelin sheath health and thus nerve conduction. So to me, this would be an effect of inhibiting DHT via finasteride and a cause of impotence. Now, what the precise nature of the inflammation is has not been ascertained.

And lowered T could impair immunity—I’m blanking on your history now—did you recently crash into PFS (might you be fighting an infection down there + what exactly is the lip rash – HS-1? Could these be clues of an immune system in flux?) Regardless, as you probably know, although T can give some a temporary boost, balancing hormones is a challenge long-term and also risks suppressing endogenous hormone production. I think imbalanced hormonal expression is overall a symptom of underlying problems, hormones are way downstream…

blase · May 25, 2018, 7:06am

very good question…
this is on of the first thing i asked the doc.
He said it was not a good idea to make a biopsy in this area. it could cause more damage than good. It is an area very difficult to access.

molybedenu · May 25, 2018, 7:08am

What is happening here? Has anyone seen an immunologist about determining the source of the inflammation?

Xhorndog · May 25, 2018, 7:14am

well???

jeff12 · May 25, 2018, 7:16am

This post definitely needs to be bumped! Has anyone got any further with this? I am tempted to be the guinea pig here…if anyone can point me to a good immunologist in London!?

gefinauser · May 25, 2018, 7:17am

I’d try this if I had the money, definitely. Idk anyone in Finland either but i consider this to be that big of a finding that i’d be ready to fly to France for this.

somebody’s going to joke about Kos but jokes on you, i had pretty massive gains from that trip…

jeff12 · May 25, 2018, 7:17am

A problem I have been having is getting a harder flaccid penis on standing. This oedema idea is pretty interesting.
The fact that there is inflammation/signs of edema in this diagnosis…

"Peripheral edema

Symptoms of peripheral edema include swelling of the affected area(s), which causes the surrounding skin to “tighten.” The swelling from peripheral edema is gravity-dependent (it will increase or decrease with changes in body position). For example, if a person is lying on their back (supine), the swelling will not appear in the legs, but will appear in the area around the sacrum. The skin over the swollen area appears tight and shiny, and often when pressure is applied to the area with a finger, an indentation appears. This is called pitting edema."

"Causes

Medications: Edema may be caused by a variety of medications, for example, steroids, calcium channel blockers (CCBs), thiazolidinediones, nonsteroidal antiinflammatory drugs (NSAIDs), estrogens, etc.)."

bryce54 · May 25, 2018, 7:17am

jeff12:

A problem I have been having is getting a harder flaccid penis on standing. This oedema idea is pretty interesting.
The fact that there is inflammation/signs of edema in this diagnosis…

"Peripheral edema

Symptoms of peripheral edema include swelling of the affected area(s), which causes the surrounding skin to “tighten.” The swelling from peripheral edema is gravity-dependent (it will increase or decrease with changes in body position). For example, if a person is lying on their back (supine), the swelling will not appear in the legs, but will appear in the area around the sacrum. The skin over the swollen area appears tight and shiny, and often when pressure is applied to the area with a finger, an indentation appears. This is called pitting edema."

"Causes

Medications: Edema may be caused by a variety of medications, for example, steroids, calcium channel blockers (CCBs), thiazolidinediones, nonsteroidal antiinflammatory drugs (NSAIDs), estrogens, etc.)."

You have this:

DISCLAIMER
None of this is medical advice. I am not a medical doctor. I do not recommend doing any of this. Get a professional.

INTRODUCTION
I have created this guide as an extremely concise program to eliminate hard flaccid. I think it can cure hard flaccid in a few months. I had someone test it out in private and they got standing erections back within a week. Since I have found this guide to have been the most consistently proven way to heal, I do not think any more serious changes to it will occur. The first version was more of an outline of the different steps, the second version focused on the key muscles to fix, but this version takes on the body as a whole, and specifically seeks to retrain the pelvic floor itself.

WHAT IS HARD FLACCID
The ischio gets a strain, and cramps. It sticks around because of postural issues, psychological issues, and the natural tone of the muscle gets messed up. This makes it weak, and so it needs conscious rehabilitation. It’s really not a big deal at all, and not as complex as you might think. Avoid Dr. Lin, and Cure-Erectile-Dysfunction.com guy.

READINGS
A Headache in the Pelvis, a New Expanded 6th Edition by David Wise
The Triggerpoint Therapy Workbook by Claire Davies
All of my forum posts
Anything you can find on bandhas, and yoga in general (in particular the poses used in the Bikram series)
Anything else you can find on diet, in particular Raw Organic Foods Diets

DIET
Eat 3 meals a day at minimum, eating healthy foods that are organic. Eat anti-inflammatory foods. Absolutely no sodas, fast food, or most things in a box. No processed foods. Eat according to the raw foods diet. You can add in supplements to promote anti-inflammation, like fish oils. Fruit and protein shakes are great. You must drink A LOT of water, everyday, to replenish your body after the yoga. Do not take any PDE5 inhibitors.

YOGA
For 60 days you must go to Bikram Yoga, everyday, without stopping. You must learn to engage all three bandhas when appropriate. Mula Bandha can be engaged during almost every asana. Same with the abdominal bandha. This will give back the proper tone to the pelvic floor muscles. Listen closely to the instructions during class. Using the bandhas has been the most important aspect of the yoga in healing.

MEDITATION
Everyday you must meditate. Yoga Nidra is a good choice. Make this in to your own personal journey and learn to intuitively feel your body.

MASSAGE
Massage tight areas that hurt avoiding pulses using the press and hold technique. You can get a rumble roller, theracane, etc. The wise book as stuff on internal massage.

OTHER
Avoid sitting for long periods of time, and watch your daily postural habits. Consistent diet and yoga are the most important aspects for healing. Print this out, see a professional, and never come back here again. Stop caring about hard flaccid.

I am going on another hiatus. Best of luck to all

forum.hardflaccid.org/discussion/240/epohs-guide-v.3.0

jeff12 · May 25, 2018, 7:17am

bryce54:

jeff12:

A problem I have been having is getting a harder flaccid penis on standing. This oedema idea is pretty interesting.
The fact that there is inflammation/signs of edema in this diagnosis…

"Peripheral edema

Symptoms of peripheral edema include swelling of the affected area(s), which causes the surrounding skin to “tighten.” The swelling from peripheral edema is gravity-dependent (it will increase or decrease with changes in body position). For example, if a person is lying on their back (supine), the swelling will not appear in the legs, but will appear in the area around the sacrum. The skin over the swollen area appears tight and shiny, and often when pressure is applied to the area with a finger, an indentation appears. This is called pitting edema."

"Causes

Medications: Edema may be caused by a variety of medications, for example, steroids, calcium channel blockers (CCBs), thiazolidinediones, nonsteroidal antiinflammatory drugs (NSAIDs), estrogens, etc.)."

You have this:

[quote]
DISCLAIMER

Thanks for the heads-up.

Do you know what a cure for pudendal nerve compression/irritation is? (the type these guys have got)
Physical Therapy:
* rehabilitation of the pelvic floor, abdominal, gluteal, lumbosacral and hip rotator muscles
* pudendal nerve mobilization, connective tissue mobilization and myofascial trigger point release of the surrounding muscles and tissues.
* range of motion and strengthening of certain muscles to improve core and lower extremity balance and stability

beyondbasicsphysicaltherapy.com/pudendalnerve.shtml

This is almost certainly causing my problems and even other users on here have made improvements with pelvic floor exercises…the only people I have heard curing themselves from this are on the HF site.

I just think this evidence, plus the results, plus the fact people are getting numbness (an obvious sign of nerve problems) is too much to ignore. If anyone lives in the vicinity of New York I would certainly give it a go…if I’m honest I can’t see how eating healthy and exercising are going to achieve this alone. If the nerve is trapped and the original problem is gone I don’t see how it can unblock itself.

my 2 c…I know this has been mentioned before and I’m going to get slated but whatever!! we were all ferried here on the same boat whether we are still in exactly the same one or not

Xhorndog · May 25, 2018, 7:17am

There is logic to finasteride having caused this type of injury, but why is E.D. not listed as a primary symptom in the link?

Tlecum · May 25, 2018, 7:17am

fina13, I am guessing that the Dr. also prescribed amoxicillin or penicillin. I recently had sinus infection and was prescribed amoxicillin. I can truly say it is the first time i felt horny in two years. I felt this way nearly every day. Penis also had more feeling.

komas · May 25, 2018, 7:17am

jeff12:

Thanks for the heads-up.

Do you know what a cure for pudendal nerve compression/irritation is? (the type these guys have got)
Physical Therapy:
* rehabilitation of the pelvic floor, abdominal, gluteal, lumbosacral and hip rotator muscles
* pudendal nerve mobilization, connective tissue mobilization and myofascial trigger point release of the surrounding muscles and tissues.
* range of motion and strengthening of certain muscles to improve core and lower extremity balance and stability

beyondbasicsphysicaltherapy.com/pudendalnerve.shtml

This is almost certainly causing my problems and even other users on here have made improvements with pelvic floor exercises…the only people I have heard curing themselves from this are on the HF site.

I just think this evidence, plus the results, plus the fact people are getting numbness (an obvious sign of nerve problems) is too much to ignore. If anyone lives in the vicinity of New York I would certainly give it a go…if I’m honest I can’t see how eating healthy and exercising are going to achieve this alone. If the nerve is trapped and the original problem is gone I don’t see how it can unblock itself.

my 2 c…I know this has been mentioned before and I’m going to get slated but whatever!! we were all ferried here on the same boat whether we are still in exactly the same one or not

As I’ve noted before, there is an amazing amount of overlap here that demands serious investigation. For the time being this is where I’m focusing my efforts towards recovery.

moonman1 · May 25, 2018, 7:17am

A good primer / discussion on this same issue… viewtopic.php?f=30&t=5341

Apparently the Neurosteroids Levels study has came back with “excellent and significant” results…which to me points that Allopreg. is likely low. Allopreg. being the #1 NS activator of GABA-a. So If the low Allopreg. levels are indeed the case then that in itself could explain the Inflammatory Neuropathies and CPPS imo.

Let’s remember that Fin. decreases Allopreg. levels 8x more than it decreases DHT levels while on Fina.

Mew · May 25, 2018, 7:17am

Can you cite scientific papers that state allopregnanolone plays a role in modulating inflammation and CPPS?

Tlecum · May 25, 2018, 7:17am

I sometimes get swelling in my penis when I masturbate too often. I’m guessing this is either thrombosis or sclerosing lymphangitis. I’m wondering if perhaps it is the same lack of drainage that is responsible for the inflammation of the pudendal nerves.
In researching this I also found an interesting article: “Severe penile edema: An unusual presentation of metastatic Crohn disease”

onlinelibrary.wiley.com/store/10.1111/j.1442-2042.2006.01259.x/asset/j.1442-2042.2006.01259.x.pdf;jsessionid=6F205B4800677E5E5379C9B40FD2D76E.d02t02?v=1&t=h6a1max9&s=f0209b7e0d23e767de4b8bcb71dffa4d70899300&systemMessage=Wiley+Online+Library+will+be+disrupted+on+25+August+from+13%3A00-15%3A00+BST+%2808%3A00-10%3A00+EDT%29+for+essential+maintenance

I have neuropathy and have read the french doctors have spotted an edema blocking the nerve. I also have problems with digestive track since fin though have not been diagnosed with crohn’s. Just wondering if there could be some connection.

jeff12 · May 25, 2018, 7:18am

This thread should be a sticky for this section IMO. It is a diagnosed problem and would explain nearly all sexual side effects people are suffering on here.

The simplest answer is usually the correct one…numbness and sexual dysfunction together = nerve problem.

Xhorndog · May 25, 2018, 7:18am

Amen! And this finding does not have to explain any other PFS sides. Although, imagine the possibilities if the source of compression/inflammation is relieved and proper nerve conduction, blood flow, and urogenital organ function return.

Interesting note: One of the PFSers who participated in awor’s study also had diagnosed prostatitis and tested positive with this pudendal neuropathy.

jeff12 · May 25, 2018, 7:18am

Can you send a link please buddy?

I guess the thing to stay positive about in all this is the fact that there have been forms of recovery on the forum. This is likely not pointing to permanent nerve damage.

If I am prefectly honest I think estrogen is the main culprit in the sexual sides (please don’t rip my head off for saying this!)…maybe JG was really on to something by taking tamoxifen. I looked in to Progesterone cream as something that reverses estrogen caused oedemas but then found conflicting information saying it can actually cause them (plus it being a potent DHT inhibitor scares the shit out of me).

Going to a PT next week and still waiting for a call…wish me luck!

Oscar · May 25, 2018, 7:18am

The tests mentioned in this thread - Electromyography (EMG) and Somatosensory evoked potentials (SSEPs) - should be in big flashing letters on the homepage of this website.

[Size=4]“Get an EMG and SSEP to test for Peripheral Neuropathy!!!”[/size]

Its that important. These tests provide important objective results. People have spoken of their relief of finally getting a diagnosis.

This neuropathy is the chink in the armour of PFS. It cannot be ignored. And hopefully if enough doctors explore the cause the cause will be found.