Unusual symptoms, could it be pudental nerve neuropathy?

[fangshi]

Hi guys,

I just stumbled upon this disorder today and I am really concerned, that after all my health problems could be related to this! :O

I am a 25 yo Male and for the last 3-4 years I suffer from the following problems:

In the last 2 years symptoms more or less stayed like this:
- chronic muscle tension in the whole abdominal muscle, back muscles, upper legs; actually almost all my muscles feel tense most of the time
- cold, hard flaccid penis most of the time (so even when not errect, the penis tissue is inflexible, cold and retracted MOST of the time), not warm, pliable and "thick".
- penis feels kind of numb, reduced feeling
- skin on the shaft feels weird, paperlike, if I rub it it hurts and gets red very quickly, also the skin on the penishead is very dry, and insensitive
- erections are fairly weak, feel very rubberlike and can subside super quickly
- Premature ejaculation is getting worse and worse, once I even got a ejaculation from my girlfriend massaging my lower back! Even when I masturbate, as soon as I start I get the feeling of ejaculation; feel hypersensitive.
- after being stimulated without ejaculation I get super swollen veins(?) around my testicles, which feel heavy and painful for some while.
- I have urinary frequency and burning
- most of the time loose stool, sometimes constipation
- if I wear tight pants, its very uncomfortable, my legs tingle and feel weird
- I am anxious, slightly paranoid and very much a hypochandric, actually just thinking about having this condition which can only be healed by surgary (which I fear more then almost anything) is crushing me and makes my symptoms worse from being anxious.

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So far I was thinking its Chronic Pelvic Pain Syndrom: www.pelvicpainhelp.com/symptoms/male-pelvic-pain/ which could be treated by Triggerpoint therapy, Massage, Physical Therapy in general and relaxation, maybe also psychological therapy. So they say its a circle of anxiety-tension-pain, which lets also to nerve compression and irritation.

What worries me so is the partial numbness of the penis and the weird feeling I get from wearing tight pants, because that both seems to be purely caused by nerve-problems.

ON THE OTHER HAND:
- I fortunately do not suffer from pain
- my symptoms are not aggrivated by sitting
- I didnt have a Injury/operation/accident at the onset of symptoms, that I could think of. They just started to creep in...

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So I would like to hear your opinions if this sounds like classical pudental nerve neuropathy or not.

Thanks alot,
fangshi

[helenlegs 11]

You need to go and see your doctor and get advice. I would mention your PN/pelvic nerve worries, just to see if the Dr is aware of the condition and get a hopefully positive reaction.
You mentioned urinary frequency and burning, so I would expect you will be sent for urological tests. If they come back negative then pursue the PN angle. Find a PN aware clinician from the home pages here (Dr and Physiotherapist) and look into the medication options too.
Because you are an anxious person I think the PT could help enormously. I wouldn't worry about 'surgery being the only cure',
that is not the case, especially when there is no 'trauma event' initiating the symptoms.
Go to a PN aware PT and get to know where the tight trigger spots are in your muscles. Your anxiety and subsequent muscle tension could be irritating the pundendal nerve so don't think that a nerve problem (like numbness) is always a surgical necessity. Calming the muscle tension down can be enough for positive results. There are tons of techniques that can help.
Take care,
Helen

[fangshi]

Because you are an anxious person I think the PT could help enormously. I wouldn't worry about 'surgery being the only cure',
that is not the case, especially when there is no 'trauma event' initiating the symptoms.
Go to a PN aware PT and get to know where the tight trigger spots are in your muscles. Your anxiety and subsequent muscle tension could be irritating the pundendal nerve so don't think that a nerve problem (like numbness) is always a surgical necessity. Calming the muscle tension down can be enough for positive results. There are tons of techniques that can help.
Take care,
Helen

Really? Oh god, you made my day! So far I always thought that this is a muscle disorder which can heal with PT, massage, relaxation, maybe also psychological therapy, because of my anxiety;
but guys on forum dededicated to Chronic Pelvic Pain Disorder in men like this one: http://www.chronicprostatitis.com/forum, do share alot, but not all of my symptoms, especially these I think are more nerve related:

- Intolerance to wear tight pants, causes tingling burning in my legs
- almost numb penis, greatly reduced sensitivity
- a constant light tingling and weird feeling in the legs, legs movement somehow arkward and clumsy.

----

For some reason from my preliminary reading I had the impression, that this is a chronic condition, which can only be relieved by expensive surgery with varying results.... made me really depressed.

So you are saying a pro-active approach of Physical Therapy, relaxation, maybe Anxiety therapy could heal the nerves completely?

I also think and HOPE, that my nerves are just irritated and can heal naturally.

Do you think it is a good sign, that I have episodes of sometimes a few day, where my symptoms get much better temporarily, so never completely?

WHY is surgery necessary in some cases? What changes did the 'trauma event' that cannot heal naturally anymore?
Too much sitting and a tendency to clench the pelvic floor/anus in stress situations are not considered a 'trauma event' are they? :S


BTW: I went to MANY doctors, 30+ urologists, they ALL told me "everything" is fine. I think they are just clueless. I went to a Neurologist once too, she made some tests on my legs and concluded one of my legs reacted slightly abnormal. Later when I asked how to follow up on it, she said its probably nothing...
So yeah, I pretty much gave up on normal school medicine. I either have to find a doctor who specializes in this stuff or I will get the 100. "its all in your head" answer.

I live in Germany, any ideas which doctor I could go too, to get a reliable diagnosis for this?
EDIT: Ok, I just read your post again and found a Doctor in Austria.
What about PT? There are only therapists in UK and France. How often would I have to go there? Can they give patients exercises for doing at home to relieve symptoms? What would a PT do in case of Pudendal Neuralgia? Triggerpoint Massage?

[fangshi]

One more thing,
I am just reading this paper on Diagnostic Criteria for Pudendal Neuralgia: http://www.pudendalhope.info/sites/defa ... iteria.pdf

It states:

Allodynia or Hyperpathia
Allodynia or hyperpathia, highly suggestive of neuropathic
pain, correspond, in the pudendal nerve territory, to intolerance
of tight clothes and underwear (boxer shorts are
preferred to briefs), and intolerance of vulval contact (as in
vestibulodynia) with superficial dyspareunia.

I HAVE this, but interestingly enough I can wear tight underwear all day long, without symptoms, but if I put on a tight jeans I get very annoying tingling, slightly burning sensations in the thighs. Just think its interesting. Could this still be PN?

[helenlegs 11]

I would ring or e mail around local physio's and see if any do know about PN or are especially knowledgeable on the pelvis. I think there is a Dutch or German forum which is active on here so maybe they could help too.
Lots of luck
Helen

[helenlegs 11]

Just thought I would post that 1st one quickly as you were on line but to answer your questions, YES, I think there is every chance that physio and relaxation techniques could help you, along with medication and some lifestyle changes; usually, not sitting if sitting causes symptoms, pacing and not overdoing certain things that can trigger problems, Going more grunge and wearing baggy trousers

The thing with CPP disorder is it's more of an umbrella diagnosis and at least you do seemingly have these additional nerve issues which can pinpoint more exactly where the problems may be.

The rule of thumb seems to be that if there has been no trauma event preceding or initiating the PN symptoms, the much more likelihood that conventional treatments (physio, medication maybe later a block IF deemed necessary) will be successful.
Surgery would only be thought of as an option when all conservative treatments have been exhausted with no significant improvements. That is when the Pudendal Nerve would be actually Entrapped (PNE) so the only way to free it would be nerve decompression surgery.
Most people suffer with pudendal neuralgia (PN) rather than PNE and it is reported that 70% of PN patients can get great results conservatively.
I have a good feeling that you will be one of the 70% statistic
Hope this helps,
Helen

[fangshi]

Just thought I would post that 1st one quickly as you were on line but to answer your questions, YES, I think there is every chance that physio and relaxation techniques could help you, along with medication and some lifestyle changes; usually, not sitting if sitting causes symptoms, pacing and not overdoing certain things that can trigger problems, Going more grunge and wearing baggy trousers

The thing with CPP disorder is it's more of an umbrella diagnosis and at least you do seemingly have these additional nerve issues which can pinpoint more exactly where the problems may be.

The rule of thumb seems to be that if there has been no trauma event preceding or initiating the PN symptoms, the much more likelihood that conventional treatments (physio, medication maybe later a block IF deemed necessary) will be successful.
Surgery would only be thought of as an option when all conservative treatments have been exhausted with no significant improvements. That is when the Pudendal Nerve would be actually Entrapped (PNE) so the only way to free it would be nerve decompression surgery.
Most people suffer with pudendal neuralgia (PN) rather than PNE and it is reported that 70% of PN patients can get great results conservatively.
I have a good feeling that you will be one of the 70% statistic
Hope this helps,
Helen

Thank you so much for the information and encouragement!

I would only like to ask, if it is possible to resolve the issue that causes PN (tense muscles, stress?) so that the symptoms go away completely SOMEDAY. I am a realistic person, probably it will take years of lifestyle change and therapy, but are there people that got over PN and live a normal life without medication and symptoms? :S

What kind of medication would a PN sufferer take? What is their effect? Do I have to take them indefintely?
I would like to avoid meds IF possible, because I am very health conscious and I am also afraid of medication sideeffects. I dont have any symptoms that are totally intolerable, so I dont need anything for pain relieve.

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I would also kindly as you to elaborate what "entrapped" means? I read there is scar tissue formed around the nerves? How would that happen? Did the tissue around the nerves get destroyed/injured in an accident like a ski-accident and form scare tissue that permanently restricts the nerves?

Thanks again, helen.

[flyer28]

Fangsh, some of your symptoms are similar like mine, plus I have some pain at the base of penis and in the area of isciocavernosus muscles.
Regarding that "hard flaccid" phenomena, which is somehow strange and does not have clear cut explanation, there is whole, very informative page about it
www.hardflaccid.org
I believe that most of your symptoms are of myoneuropathic nature, that means that primary probem is not nerve entrapment but the overall situation of pelvic muscles, nerves, ligaments etc. and should be approached in first line conservatively.

[helenlegs 11]

I'm not sure what to say with regard to medication if you have no actual pain that can't be handled. The usual combination of drugs for nerve pain would be an anti depressant (say cymbalta) with an anti epileptic drug like neurontin/gabapentin or Lyrica/pregabalin.
Pain can cause tension which then can cause more pain in a continuous cycle in a pain 'wind up' so introducing this medication as soon as possible can help calm things down. However you don't have significant pain so I think I'd stay clear, as medication can cause it's own problems. You are right to be cautious. . . although I would recommend if there was pain.
You are correct about entrapment, although sometimes the pudendal nerve can be caught between two pelvic ligaments. There are a couple of 'notorious' places that PN can occur although the nerve can be entrapped anywhere along it's length of course .
In my case I had a fall and a subsequent haematoma in my piriformis muscle (next to sacroiliac joint) I had a lump there for about 3 months (all I did was fall heavily onto my bum!) Apparently scar tissue then developed and has caught the sciatic, pudendal and probably post femoral cutaneous nerves in the scar tissue.
The nerve isn't destroyed just impaired, sometimes flattened and stuck giving rise to typical nerve pains and problems. This doesn't need to be permanent but the solution would be surgery, although there is talk of electric shock wave treatment being effective for some.
Hope you get the help needed soon
Helen