Author Topic: My Theory  (Read 26804 times)

Chris

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My Theory
« on: April 18, 2013, 04:47:27 PM »
I am an EA sufferer for 30+ years.  I am also an MD, so I have a unique perspective on what may be going on.  I'm going to keep this succinct, because I think the cause is rather simple.  First off, I do believe the post SSRI group of sufferers are following a different mechanism altogether whose origin must be central (i.e. in the central nervous system pleasure pathways).   But for the rest of us, my observations and experiences have resulted in the following paradigm. For me, there is some sensation during the build up but what is most interesting is how the involuntary muscle contractions that define male orgasm coincide with an obliteration of sensation.  I do not think this is a coincidence.  Moreover, my EA started extremely early in my sexual development, like shortly after discovering what self pleasure was all about.  It also happened instantly.  I still recall the day that the pleasure stopped and my abject surprise.  Also, it was a little painful in the beginning.  But after the pain wore off, the orgasms just were without feeling.  And the build ups while not absent were muted.  I also remember a short time period of sharp, brief stabs of pain centered in the anal area, which also subsided.  Taking all this information collectively, this is what I think is going on:

The pudendal nerve, like all nerves, probably takes various courses between the penis and spinal cord.  All anatomical structures in our body have extreme variability in terms of their locations, divisions, size, symmetry, etc.  Why should this structure be any different?  I believe the vast majority of EA sufferers have some variant in the trajectory of this nerve, which by the way, must weave its way through layers of perineal muscles and various protective canals before it reaches the sacral nerve roots.  I believe EA is a COMPRESSIVE NEUROPATHY (like carpal syndrome) which is caused by an anatomical variant in PD nerve course which results in severe nerve compression when the perineal muscles tonically then clonically contract duriing male orgasm.  I believe the exact anatomical variant may result in nerve compression and damage very early in sexual life or perhaps later if the compression is not as severe, hence different times of onset. 

I do not believe my PD nerve is totally shot, and I have some pleasure during buildup, but the involuntary muscles contractions that occur simply choke the nerve at the exact moment of orgasm....which leads me to my next important point.  Will reaching orgasm cause any pleasure without some nerve stimulation?  I think not, there must be some nerve stimulation from the genitalia to transmit to the pleasure centers to cause pleasure.  Without it, even though arousal is high, nothing integrates in the pleasure center to cause the feeling.

If my theory is correct, the only treatment that I see working is 1) pharmacologically enhacing afferent neuro transmission from gentialia with various neurotropic drugs  2) relieving the compression with surgery  3) bypassing the compression with electrical stimulation, either via the skin or implanted close to sacral nerve roots

That's it...I don't think it's complicated, just a stupid compressive neuropathy.  Virtually any nerve in the human body can be compressed, and if look at the structure of the human perineum you'll appreciate quickly that there are many opportunities to compress this nerve.

sensation

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Re: My Theory
« Reply #1 on: April 19, 2013, 01:24:35 AM »

Hi,

I think there may be different conditions that lead to stop feeling physical sexual pleasure. I never took SSRI medication, but I think my problem must also be in the central nervous system. There is something that I will repeat once and again: pleasure not only 'happens'* (more on this at the end) 'in the sexual organs'. There are lots of erogenous zones in the body which, when stimulated, feel very pleasant. My body was an overall party just six years ago. Sex was an overwhelming experience, either on my own or in the company of other men. Sensations started to fade out gradually but I only realised when they suddenly stopped, maybe from 50 percent of sensation level to almost zero. If I didn't have SSRI meds, which was the cause? Other medications? Where does my case fit?

I do feel other types of pleasure (I mean I don't suffer general anhedonia), and I do even feel some physical pleasure from certain activities. But I don't feel the sexual pleasure, the electric sensation on the erogenous zones. It is very difficult for me to explain it, given that English is not my mother language and that this is a very personal experience. But I'm surprised and very upset that it is so specific. I think I still have all my other sensations intact. Like most of us, I've tried to explain my case to many doctors but I didn't get much help. I'm still trying, though.

The mind is an amazing machine and I've learnt to derive pleasure from other activities, but it isn't enough, maybe because I know how I should feel. It has really put my life upside down. I want to engage in sexual activities and in a romantic relationship if possible, but I feel unable to do it anymore. I can do little on my own to solve this. I need somebody to help me investigate, use logic, try things, etc. I know my sensations but I have no medicine or chemistry knowledge, except for what I can read. But I can't extract many conclusions from it, because I have a lack of basic knowledge to understand it.

I know I must not reopen Pandora's Box, but if the guy who said was a guinea pig for Think Fast Research was a real case, I think somebody else would have found a solution. It would be very selfish of him to keep the solution for himself only. We never ever knew anything else from them and I repeat I'd never pay for something like that. All I want is to establish a conversation with somebody who can translate my sensations to medical science...

* For instance, how is pain transmitted in the body? Electrically? Chemically? Both? Is there any chance that pleasure is transmitted in a similar way? Why do analgesics work? Do analog substances exist for blocking other sensations?

I'm sorry to be a pain in the ass with my posts.

needhelpage31

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Re: My Theory
« Reply #2 on: April 19, 2013, 09:06:29 PM »
Chris - I am intrigued by your theory. It's simple, and it seems like it could account for our problem. I have a few questions for you that I hope you can take the time to answer.

1) Would the compression that you describe be progressive? For example, for me, the anhedonia crept up on my over the years. It began as diminished orgasms. Later, I found that intercourse itself was pleasurable, but the climax was totally pleasureless. Today, even intercourse can be very lacking in pleasure. Would this fit your theory?

2) Are you saying that the compression is caused by muscles or muscle tension? Is that why the contractions normally associated with orgasm would cause discomfort, or make feeling leave entirely?

3) How could we test this theory?

4) What would be some specific drugs that might assist if your theory is right?

5) Are there any tests, scans, or methods to physically see whether there is nerve compression?

6) Where, anatomically, would you suppose the compression is happening? In the spine itself?

7) And finally, you are a doctor. What will you do to seek improvement? (Or have you given up after so long?

Thank you so much for answering these. I'm eager to learn your thoughts.

Chris

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Re: My Theory
« Reply #3 on: April 20, 2013, 01:57:35 PM »
Certainly, compressive neuropathies can be progressive if the underlying problem is not addressed.  If you compress any nerve long enough, it will wither and failed to conduct electrical impulses.  It can even cause chronic pain, so called pudendal neuralgia.  Do you have any dull ache in the perineum?  i.e. scrota/anal/sacral area?

The compression I am surmising is do muscles and tendinous attachments in the perineum.  Traversing this muscle layer is a long, circuitous path and if the path of the nerve is not "ideal", meaning an anatomic aberration, the strain on the nerve can be damaging.  Certainly, tension in the muscles, if chronic, can add to it, which some people believe is the primary problem.  You are spot on about the contractions:  they are strong, involuntary and a normal part of orgasm but they can also impinge the nerve more.  A fascinating concept, the actual orgasm itself damages the nerve!  This also explains why, for me, a second sexual encounter, after the initial one, is actually uncomfortable and less pleasurable than the first, as the nerve has had no time to recover.

Testing the theory is key and I have thought about this alot.  One ideal is electrical stimulation with a TENS unit.  Placing electrodes first on the penis then gradually more proximal along the perineum, then finally over the sacral nerve roots.  If electrical stimulation can be delivered "upstream" to the lesion, assuming all other spinal and central pathways are functioning normally (which is the assumption of my theory), orgasm should turn on and work. Other ways to test it would involve nerve conduction studies to see if the pudendal nerve shows signs of slow conduction.  I have not done any of this yet, but want to. 

Specific drugs would be ANY drug that enhances synaptic transmission from these fibers where they connect to higher order neurons in the CNS.  If dopamine is the major neurotransmitter for this system, that would explain why drugs like adderall work.

Imaging the perineum probably won't yield much, as peripheral nerves in general are not very resolvable structures.  I cannot discount an MRI scan which would be best bet to discern the structures.  But the radiologist would need to know exactly what you're looking for and would have to know the normal anatomy of the pudendal nerve very well.  I am not so sure this is practical every day request.  It would need to be done in context of a research study.

The anatomic site of compression is not in the spine or nerve roots.  It is in the course of pudendal nerve as it traverses the pelvic floor.  Read up on "alcock's canal" for more info. 

I am still deciding where to go with all this.  It is a uncommon and unusual symptom and I surmise that most fellow physicians would immediately assume it is psychological which I feel it is most definitely not.  If I pursue it further, I feel best MD to discuss it with is a neurosurgeon with specific expertise in pudendal neuropathies.

collin1963

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Re: My Theory
« Reply #4 on: April 23, 2013, 09:59:29 AM »
Good heavens. And the rest of us must sit here and wonder if surgical intervention could possibly result in a 7/10 sensation result or maybe we should just go ahead and prolong the gorge on GABA, Vit B6/12, Lecithin, Niacin and God knows what else. Methinks... What the hell else is there?

searchingforcure11

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Re: My Theory
« Reply #5 on: April 23, 2013, 02:33:01 PM »
Focalin works for me:)  No one seems to try it.

Saul

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Re: My Theory
« Reply #6 on: April 24, 2013, 03:43:48 PM »
You propose a very interesting theory and I was particularly intrigued by your following statement " I also remember a short time period of sharp, brief stabs of pain centered in the anal area, which also subsided"

I would describe my condition similarly to yours and these pains are something I periodically experience. The only difference I would note is that I never noticed a sudden change. However this may be because the problem arose earlier in my sexual development or at least in some way prior to my learning to masturbate (but after wet dreams in which I think I used to experience orgasm).
EA Dates:
No recollection of orgasm ever
Medical Conditions:
Depression 17-28
Sleep disturbances 19-28 (excessive sleep)
IBS 0-28
Hayfever 0-28
Lactose Intolerance 21-28
Drugs taken:
20-21 Fluoxetine 40mg, 21-23 Venlafaxine 75mg, 24-26 Fluoxetine 40mg Lamotrigine 200mg, 15/07/12-Now Agomela

Chris

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Re: My Theory
« Reply #7 on: April 24, 2013, 07:48:27 PM »
Yes, I think that is an interesting clue that strongly points to the disorder being centered in the peripheral nervous system, not the central nervous system.  Various branches of the pudendal nerve provide sensory input to the entire perineum, including the anal area, explaining why there may be some "neuralgia" in this area.

I'm not sure people know this, but this nerve is susceptible to compression from long periods of sitting, or even cycling, and injury can often result in disabling chronic pain.  What perplexes me is why some people may develop crippling chronic pain, and others simply lose sexual sensation.  Remember the sexual sensation relates to afferent nerve fibers that also carry simple tactile (touch) stimuli.  So, if touch sensation is weak, sexual sensation will be weak (when one is sexually aroused).

My theory is focused on chronic compression from pelvic floor muscles, particularly contractions that occur naturally during ejaculation.  I think a very important clue lies in the fact that sensations may go from mild-moderate to zero at the precise onset of orgasm (i.e. that brief period when muscles tonically contract before starting to rhythmically contract).  This strongly supports the idea that pelvic floor muscle contractions literally impinge the nerve.  Only problem is these contractions are NORMAL.  Which then suggests that the nerve is somehow more vulnerable than it should be in men with EA, i.e. in normal people the nerve is protected, even during orgasm.  Which then supports the notion that men with EA are somehow anatomically different than normal men, i.e. we are born with an anatomical variant in nerve length/course that predisposes to EA.  This is the essence of my theory.

A rather sobering and depressing theory, albeit a physical explanation that makes medical sense.  I don't think it's some weird coincidence that I developed this early in male puberty and stand here some 30+ years with no improvement.  The pudendal nerve is simply not going to conduct if it's strangulated.  Perhaps amphetamines are the answer as one forum member asserts, but I am quite reluctant to put myself on a highly addictive substance for the rest of my sexually active life.  Another forum member mentioned lamictal some time ago, but I've never heard of any follow up in this regard. 



AlBrown

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Re: My Theory
« Reply #8 on: April 26, 2013, 10:19:50 PM »
My thoughts have been the same as your theory Chris and that is the path I have gone down in my treatment and research over the years.  My symptoms and previous traumas certainly indicate this is plausible for my case.  Further evidence was also seen with some of my results of the nerve testing (PNTML).

Unfortunately as you have stated, it is a complex region and the medical research and tools in this area are scarce.  I have tried TENS but not in the manner you have suggested so I may give it a shot.  Thanks for the tip.
 

lostmojo

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Re: My Theory
« Reply #9 on: April 27, 2013, 05:42:33 AM »
Thank you for your theory Chris. My physical symptoms are very similar to needhelpage31 except that I also have this weird inverse relationship between intensity of genital stimulation and ejaculation.

It can be summed up thus, the lighter the stimulation the more likely I am to ejaculate. I am normal in the sense that the stronger the stimulation (within reason) the more pleasurable it feels, but I also have some sense of being able to hold back ejaculation. Normally this should be the other way round, more pleasure should equal harder to hold back.

In response to extremely light touch or most sexual positions I have almost no ability to prevent myself from ejaculating. Unfortunately this means I can't even pretend to enjoy intercourse because almost as soon as it starts I'm feeling the contractions about to start. Of course whether I can last or not I feel no sexual pleasure during intercourse or at the point of so called orgasm.

When I was younger I could hold off for quite a while in missionary but had a great deal of difficulty with doggy, now I can hardly find any position at all where I don't have to keep stopping to hold off ejaculation. Note also that when I was younger I could at least feel some sense of physical pleasure albeit very greatly diminished compared to before EA, now it's as close to feeling nothing as it possibly could be. The only way I can experience any pleasure now is via fairly strong stimulation from hand and/or fingers, during oral sex I also feel nothing.

When I say nothing I'm referring to sexual sensations only, I'm not numb but all I get is a sense of touch much like I do on any other part of my body.

How do these symptoms fit in with your theory Chris? Do you think prone masturbation could result in the type of compression you are suggesting? Stimulating the prostrate does not produce any sexual sensations either, could this be linked?

Chris

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Re: My Theory
« Reply #10 on: April 27, 2013, 10:03:33 AM »
Interesting.  My personal view of how this whole thing works is the ejaculatory and pleasure pathways are distinct.  I believe the ejaculatory threshold depends more on level of arousal and is under some conscious control, as most of us can attest.  The pleasure pathway needs sensory fiber input.  Since sensory neurotransmission is impeded, I believe, in AE, it should require more tactile input to generate pleasure.  I personally find that I have the most pleasure, albeit quite muted, in the few seconds leading up to orgasm, than it simply turns off like a light switch (so not alot of time to respond and relax).  On the other hand, when you feel pleasure throughout, you have some feedback from which to control your conscious arousal.  When you are mostly numb, you have no physical feedback, and do not adjust conscious arousal, and therefore suffer premature ejaculation more often. 

I do recall an experience I had shortly after discovering masturbation in my early teens, I believe.  When I first discovered ejaculation, I stopped stimulating myself when it happened and did not feel much (just out of sheer surprise!).  The next time I continued stimulating through the whole ejaculatory reflex and felt what I still recall as my one and only true orgasm.  30+ years ago I still remember a whole body experience and intense pleasure emanating from genital region.  It was shortly after this experience that I suffered a painful orgasm, and then never more.  This experience supports my notion that some physical touch is required to integrate with the arousal inputs that then lead to pleasure and ultimately orgasm.  Instead of guessing about this, all one has to do is ask a man without EA if he feels anything at all when reaching orgasm if he does not stimulate himself physically at all. 

This is all consistent with my theory that sensory (tactile) afferent fibers are damaged in EA, and impede the neurotransmission needed to integrate and form conscious pleasure.  Prone masturbation should have no affect on the pudendal nerve which is a deep structure that should not be compressed by this position.  If anything, as I stated earlier, prolonged sitting or cycling does and can compress the pudendal nerve.  The prostate is innervated by branches of the pudendal nerve, and probably upstream of any lesion, so I would expect this organ to be relatively insensate as well.

lostmojo

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Re: My Theory
« Reply #11 on: April 27, 2013, 03:39:38 PM »
Here's something else for you Chris to add to your knowledge bank.

Paralyzed man has learned how to achieve a thumb orgasm:
http://www.ibtimes.co.uk/articles/459635/20130421/rafe-biggs-orgasm-thumb-disabled-sex.htm

fireman

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Re: My Theory
« Reply #12 on: May 01, 2013, 02:20:36 PM »
chris
thanks for your fascinating posts. please continue to do so. whilst my gp is  most helpfull and considerate, he is unwilling to prescribe medication that is unlicensed ih the uk. and im not sure i would want to take them anyway. im about to have testosterone levels tested, and if that proves to be normal we have been advised to contact a specialist in london.
my case is as follows... im 55, white male, and have had ea for about 28 years. in that time i have had perhaps 2 or 3 genuine pleasurable orgasms. otherwise they are pleasureless and sometimes painfull with an unbearable tenderness on the glans of the penis. i have no sensations in the prostate area. the term ' numbnuts' could have been invented for me i think.  i have had partial feelings from small anal vibrators during masturbation, which enhance the climax, but digital stimulation of the prostate has no effect. i also have proctalgia, which can be intensley painful and is sometimes brought on by orgasm and is basically cramp of the back passage muscles. the lack of feeling means that i had been able to 'perform' with my partners for a long time, but i feel that i am being robbed of something very important to me.
in the past i have had back muscle tears, i once fell from a bike landing on my coxcyx rendering me deaf and blind for about 30 seconds, i had an operation on my cruciate ligament which has left my right shin area numb. other things have happened to me medically but all took place after the onset of ea. one of the 'normal' orgasms i had was after pelvic realignment treatment from a physio who had actually heard of the proctalgia condition( many people havent ). but i was unable to repeat the success again. at the moment im trying with a physio who also practises acupuncture. no success so far. i would give a lot to solve this. it depresses me greatly not to be able to share the sexual sensations of my partners.
chris, i think you are a major area of hope for us here. a medical man with the same condition as us lay people.

Chris

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Re: My Theory
« Reply #13 on: May 01, 2013, 04:15:01 PM »
Hi Fireman,
Your study sounds fairly consistent with my theory.  You actually have alot of the pain that go along with pudendal nerve compression.  It's a long nerve and has several branches.  Where and how the compression is sets up what will dictate the symptoms.  In my case, pain is a negligible feature as I surmise is true for many on this board.  In fact, my theory has been revised from recent research I have undertaken and now I can say I believe I understand the precise point of compression in those of us who simply have "genital anesthesia".  There is a distal branch referred to as the "dorsal nerve of the penis" which of course comes in a pair (left and right).  What perplexed me for years is how a compression occurs in two nerves simultaneously?  I mean what's the chance of developing carpal tunnel syndrome, for example, in both your hands at the exact same time.  The answer lies in this branch nerve in which the pair of nerves ride very close to one another in a ligamentous canal right below the inferior pubic ramus (thats the bone right in front of your bladder in the midline).  What happens to one happens to another since they are so close.  Next question is what happened?  What caused the space to get compressed?  The answer is in my case, I am not sure.  I simply cannot recall a major blunt traumatic injury in my life when I was 10-12 years old.  Could there have been a nasty fall from a bicycle or something that I simply don't remember?  Sure, that's possible.  Even a fall on the coccyx could impinge the nerve, albeit probably at a more proximal site where the pair of nerves is not so close.  Another possibilty is still simply genetic/congential predisposition, as I alluded to earlier, based on how the nerve was laid down during development.  Perhaps it's a little too high and close to pubic bone, perhaps it went under a tendon rather than thru it.  These are real possibilities and there are myriad examples from human anatomy where the course of a blood vessel or nerve is simply atypical/deviant which can then lead to some real clinically important consequences like compression.  So perhaps no blunt injury is required, but rather just dumb luck. 

Finally, I'd like to announce that I stumbled upon a surgeon from Baltimore whose name is Dr. Dellon and I have already contacted him.  He is one of the few people in the world with expertise in this nerve and has performed microsurgery involving "nerve release" on many patients.  The indication for surgery in most folks is chronic, severe, debilitating pelvic pain - pain that cannot be managed with strong meds or nerve blocks.  He contends that nerve compression in this area can and does cause genital anesthesia.  And he has helped some people so far.  What really interests me is the obvious splay between the "pain patient" and the "EA" patient.  What sets them apart?  Clearly, the patients with pain have stroked the medical system and have found answers simply because their lives were intolerable and they were desperate.  EA is a different syndrome.  Although I acknowledge that loss of sexual sensations is a huge, life altering event, it's not quite the same thing as someone who can't sit down without developing 10 out of 10 life disabling pain.  My point is his expertise evolved mainly from the travails of the pain patients.  The EA patients I believe are flying under the radar so to speak.  Urologists and neurologists alike are not going to have a clue about compression of this nerve, especially if all it largely causes is EA.  What I want to reinforce to him is that EA is probably alot more common than chronic pelvic pain disorders (which result largely from traumatic injury).  I believe this is truly an unchartered frontier in medicine and the only folks who will have some real results in making scientific progress are those docs/surgeons who already know the pudendal nerve from their experience in treating pain patients.  What I am ultimately telling every one is that if you're not in the SSRI group, you most probably have a compressive neuropathy and the only "cure" will involve some relatively minor surgery (with no guarantees of course).  I believe EA is a surgical disease at its core and to expect some pill to turn it around, is like saying that acute appendicitis can be treated with Advil.  I'll keep everyone posted to future insights.

fireman

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Re: My Theory
« Reply #14 on: May 02, 2013, 12:08:11 AM »
chris
again, that is all fascinating stuff. in addition to my earlier post, other possible factors in my case might be as follows;
i have a very slow urinary rate for which a urologist suggested performing an operation he had developed to cut away at the bladder neck muscle. that sounded scary to me so i refused. and a VERY tender and painful urethra, which was proven during a cystoscopy. ( even though the ''expert'' performing this told me i was imagining the pain as there are ''no nerve endings in the urethra'' ). i also suffered a bad blunt trauma to my outer right thigh which resulted in heavy bruising of the complete area from hip to knee.
i have taken anti depressants but only many years after the onset of these symptoms. the same can be said of a heart attack 7 years ago, and the subsequent  panic attacks and anxiety depression.
the compression theory would seem to fit in with the one-off relief from the ea i found after one pelvic realignment. if only i could repeat that success......