Health Organization for Pudendal Education

Hello to everyone,

(it's going to be long, sorry - but you can jump to my question below)

I'll start from the begining in 2010, i'm 5 years sufferrer, male, 38 years old, same story like the most of you - and it just got worse and worse that gradually ruined my personal life, sex, even friends and girl friends ect...

my "prostatits" / pudendal neuralgia started as annoying weird in the left side of the penis shaft when rubbed with the underwear, (i didnt notice at first) and in time developed to constant burning or stabbing pain in the buttocks, testicals, prostate, perineum,penis, genitals, peeing pain, pelvis pain even through the knees, ect. most in the LEFT side, some in the right. the pain was "jumping" from one "place" to another all the day - it was "choosing" where to attack my body, it changed sometimes whan i changed positions. worsend by sitting, lieing down didnt help, some of it dull by walking or sport, and way way worse after sex - hours of extra pain.

in the first 2 years I did'nt KNOW what is pain or nerve meds are - only some antibiotics and tylnol - that's it.
some of the nice orologists that treated me then, told me to take antibiotics to long term - that didn't help, like the 2 prostsate heat therapy (painful like hell) that did'nt help to the pain but helped some in the urine stream... said to me that i will have to live with the horrible pain - just as is. i'v dealt with the "prostatis" pain by mostly myself as i told - healthy "prostatis diet" sport and yoga streaches all the day long - becusae i couldnt stay sit from the pain and without my microwave heating pad, cooldn't lie down or just sleep in the day because of the annoying pelvis pain, i was totaly ALONE in this sh#t, the doctors didn't know what to do with me, some of them just didnt care - so i was finding myself "working out" in long walks, sport, work, even books in the late night, in the morning when the pain stared and worsend - until the late night - when my boddy was so tired and the muscles too, just then - the pain subside, and then i went to sleep - and the pain was alomst gone (it never wakes me), and this was my days, then. i did everthing reasonable to dull this horrible pain, without the meds, that i didnt know ,yet.

in the third year I developed (in time) painful sciatica in the... left side of course, it joined to the "pain party". maybe from the long walks that i did to dull the pain or the yoga alternative "prostatits" stretches, maybe from from my body that aged (i'm thin, 175m 58kg)
couple my lower BACK started to ache, and the pain was attacking both of the legs in "jolts" and those wasn't in this pain party before... maybe from the ciripractors, or other alterntive method, maybe from somthing I did wrong, or just... from age and body change and so...
so then i could'nt do my walks 'cause the pain through the left leg and the hip/thigh made me limp sometime, and I did'nt want to hurt to myself in more yoga.

in early 2012 went to the another doctors, from doctor to doctor, Rheumatologsist, Orthopedic Surgeons, Neurologist, CT to MRI and another MRI and EMG - to approach to the confusable life ruining problem the doctors couldnt find somthing "wrong" - except minor buldge disk in l5-s1 (left and back) htat they said its irrelvent. and no knee/leg reflexs and mild polin
well, they did gave me a lot of pain and nerve meds because I was in so agonising pain after three yeras of gradual suffring my PAIN THRESHOLD... I could'nt concatratre or even watch tv becuase of the pain that drived me nuts and the withdrawls from the narcotics was... well you know.

so i couldnt "live" with the medication side efects for the long term, and not without them because of the pain.
in 2014 i have read in some of the posts in this site, about torn labrums and so.
went to a doctor spciealized in this conditions, the doctor sent me to MRI to both of the side one by one - and the MRI's showed tears and other things int both of the labrums.

did my left scope surgery in 8/14 - it didnt help to the pain and gave more pain around the left thigh but i can walk without limping.

to the bottom line.
couple month before i had home accident, I used the light streatches from "headache in the pelvis" like i use to, my orologist recomended this book so i bought it couple years age end did the protocol, from time to time. not every day.
i was on amitriptyline or quit valium then, and the pain... so i did the inernal massage and pressed to hard and too high at 6 o'clock (left side with gloved thumb) (i couldnt "feel" becouse of the meds) as stupid didn'nt stop, stretched the levatyor ani way up . i'v hit a nerve or tore some of the levator ani or hit the pudendal nerve, i dont know but now things have totaly changed from this day...

i have numbnees about month and a half that spredded through my testicals, thighs, low back, perineum, lower abdominal all the saddle area is semy numb with woierd annopynig fealing and painful pinching pain about 5-6 cm up obve the left anus like my finger still there, cant feal the stomch riugth, digestion, stools, gas - almost cnat notice its all dull and semy - numb inside and in the skin outside. siiting - even with meds IS intolerable - the numbness can be so hard and cold like my bones wrapped with a plastic bag i can fell it in the upper stomach to through the knee, only if i sit - ... i'm so disapointed and angry on myself that i'v worsend my painful condition...trying only to heal myself when the doctors couldnt help me, just gave more meds. didn't lost all the erection from this "home self injury" but all of "it" doesn't feal like before, semy numb in the shaft, the skin is plastic like.

to my question:
1. As i wrote, I had pressed high and too hard in the 6 o'clock internal anal position (left side) about one minute strached or teared little portion of the levator ani or hit or just killed and overstetched a nerve above it, have did to myself permanat damage?
2. it's been too months, no improvment, coming and going and stiil always there - the numbness, worse when sitting, there was some tinglings - mostly in the late night, now it just this pinching pain above the anus and numbness (and pain) semy fealing of the saddle area and lower andominals up the belly button, way worse with sitting as i wrote. can this (loss of sensation and also numb skin pain when it is rubbed with a cloth) be improved in time? at least could i have my painful sharp old pain back? (with the senstation).
3. can surgery repair the damage i probably did? if so is there a doctor that can "give" me my sensation back and get rid of
the numbness/ pain / wierd sensation - through surgery or so?

(sorry about my misspelling..)

Hi G,

It's impossible to predict but nerves can heal slowly over time, depending on what type of damage there is, so it's possible the numbness will fade over time. It's also impossible to predict if surgery will help but that's truly a last resort and hopefully over time the numbness will fade and surgery won't even be a consideration.

All of that exercise would have ruined me even further I'm afraid, but exercise is what got me into trouble in the first place, (including stretching) because the nerve was entrapped between ligaments. I have no idea if that's what going on with you though. But please be careful.

Violet

Hi Violet,

I realy trying to think positive - as you're comment said, cause most of the days can be realy bad.
i do think the nerve is trying to heal, cause i have alterd sensation with all the numbness thing - that can change.

some of it went and then came back with full force to more parts and more severe

i didn't had numbness before, just pains.
yesterday night it went away when i was tired in bed, to about an hour or so - i'v some of the sensation back miraculously, and today has been a very good day (less numbness, only LYRICA 75 X3 and no Perc's, managed without them, less pain)

i'm trying to avoid sitting to much or just standing cause my back will hurt, light walking is fine when my pain is less severe.

i was afraid because in wikipedia is written that the pudendal nerve can't be healed if it overstretched abvobe 12~% of it's length or so (or something like that) and i was realy afraid that i'll have to live with more problems, but your word's are very comforting, thank you.

i'll going to have fresh new MRI (LOWER BACK) and EMG / NCT test pretty soon, al of my doctors recommended it, it was about 2 years and more from the last ones (not including the other MRI'S to the hips). for now i'll let my body to heal from the hip scope 4 month ago, and to adjust from the last incident...

I'V wanted to add something to the users of the internal PT massage, books, therawand or gloves and so..
and maybe don't have profesional PT thats do internal massage in their countries or don't have the money or support and so...
some of us sometimes can be on (or quit) "heavy" meds from time to time and it may change youre perception eve after cessation, youre muscle tension can change, youre sensation inside and outside youre body, just be careful with the internal massage, when or if you do it...

thats my 2 cents from the recent event...

for now i'm avoiding stretching, especially around the left hip area, the piriformis all the muscles around surgery area and light work and (wan i can) light walks (when i have less pain),just not anything that can irritate my pain's or numbness, maybe the tests will give me more answers what to do next.

again, thanks.

Hi G,

Well, I think it's a good sign that you have some good days and hopefully means that you can still achieve healing. Some people have had success with healing just by making lifestyle changes so maybe that's the right strategy for you at this point.

Take care,

Violet

Violet M wrote:Hi G,

Well, I think it's a good sign that you have some good days and hopefully means that you can still achieve healing. Some people have had success with healing just by making lifestyle changes so maybe that's the right strategy for you at this point.

Take care,

Violet

Violet,

Is there somthing edible that I can eat (vitamin or magic herb and so ) to speed nerve healing or cause it to regenerate - to start it up and get my sensetion back? And what to avoid? Is lyrica (or other nerve/pain med) can block the healing.


my numbness came back with full force..Sitting is intolerable numbing pain through the legs,
The lumbar MRI went fine, but the EMG went really bad: moderate sensorimotor polyneuropathy

Somthing hitting my nerves

I can see some similarities between your problems and mine, I also have chronic pain in genital area, which started after prolonged sex, firstly episodically then chronic and pudendal nerve is surely included. Sensitivity seems to be still ok, no numbness issues, however during flare-ups it is sometimes difficult to differetiate between neuropathic pain and some kind of numbness/tingling and all other relevant feelings many of us know...
I guess that what is clear is that pudendal nerve is included in pain party as you wrote, but we do knot know whether the pudendal nerve is main culprit or one of the contributing mechanisms in general pelvic havoc...I guess there are two essentials steps which might shed some additional light:
1. very thorough examination of pelvis by experienced PNE aware physiotherpaist, palpation of pudendus for Tinel sing, palpation of levator group (pubococcygeus, puborectalis, levator ani) which often refer pain to penile shaft etc.
2. Guided pudendal nerve block. If it is about pudendal nerve, there must be some alteration of sensation. If there is not, it might be rather general pelvic floor (and other muscles) dysfunction.
I can feel much empathy for you, having a lot of similarities, struggling with this condition for more than 5 years, with many ups and downs.
Flyer28

I would like to add some additional remarks, because my story is very similar in all dimensions, suffering cca 5 years, being in my early 40ties, having paid a lot in emotional, social as well other areas for this handicap, still not having exact diagnosis...The line between CPPS/chronic pelvic myoneuropathy and PN is very thin, all we know is that pudendal nerve is somehow involved in the general havoc in the pelvis...At least times are chaning in that terms, that some more enlightened urologists (like dr. Urban in Prague) are taking all the pudendal nerve enigma into consideration. His opinion was that classic PNE is very rare but various pudendal neuropathies are quite common and might be a part of underlying reasons for classical "chronic prostatitis" sufferers...which is obviously my case.
My pain journey started in 2009/10 with episodic, rather vigorous pain in the genital region, mainly after ejaculation, later also after other impulses...What was strikingly interesting, that the pain was never immediate, but came 24-48 hours later than the impuls. But physiotherapeut told me that this is obvious in general pelvic myoneuropathy, the muscles/nerves are thrashed after ejalucation and the spasms/pain is culminating later...
during those 5 years of suffering I had main flare-up after ECSW wave, and some other major flare-ups after ejaluation, long driving etc. There were also some better periods, lasting 8-10 weeks when my pain levels somehow subsided and were transformed into some itching/discomfort or I was lucky enough to be distracted by something. I profitted somehow from PT and Dry needling and from amytriptilin. Although I am not in 10/10 agonizing pain, I am slowly coming to conclusion that I will never get completely rid of this issue. But what is realistic, is better pain managment and prolonged period of slight discomfort, relax and good emotional coping with this life altering disease...

Flyer, sorry to hear about your painful story, you describe the painful places well, it's similar to my first years before it have been far worse...

gsystems wrote:
Violet,

Is there somthing edible that I can eat (vitamin or magic herb and so ) to speed nerve healing or cause it to regenerate - to start it up and get my sensetion back? And what to avoid? Is lyrica (or other nerve/pain med) can block the healing.

Gsystems, lots of people have asked about oral supplements or medications you can take to speed nerve healing and I think that's a really difficult question to answer with certainty because noticeable healing of nerves often takes place over months or years, not days or weeks so it's hard to know if something subtle like vitamins, etc. is what brings the healing. I tried lots of supplements but none of them were immediate fixes. Mostly I just try to live a healthy lifestyle with good nutrition because I feel like I can't go wrong that way.

Violet

I had pretty much the same scenario, except i wasnt doing internal massage, a urolgogist was actually checking my prostate and for some reason pushed wayyyyyyy too hard causing immense pain. Since that day forward all the areas of pudendal pain turned into numbness and ive lost a very large amount of function. I asked the doc about it and he insisted that no damage was done from what he did but im sure it was the cause as the change was immediate. Ive had prostate exams before and they never felt like that. I have extreme anger towards the doctor when I look back on the situation and it was almost 5 years ago with 0 improvement. Id take the pain and function anyday over what I deal with now. Your injury is still early enough to have hope but honestly if you dont have some sensation return within a year id say it doesnt look good my friend. I wish I just stayed on painkillers instead of visiting doctors in search of a cure. I hate to say it but most of them are truly terrible people who don't care about their patients well being.