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Joined: Oct 22, 2011

help with a possible misdiagnosis and return of my sanity

Posted by @mystyk, Oct 22, 2011

i am a sufferer of NMO and i recently at about the same time as my last relapse, lost my sexual function. not my ability to achieve erections, i still have that and with one of the hardon pills i can even remain hard for quite some time(45min to an hour). now because of the NMO it was thought to be because of the nerve damage from the relapses. now i knew from the beginning that this was wrong for a few reasons: i had already fought my way back from full quadriplegia to the state im in now. when my legs were still just blocks of wood i could still orgasm, though there was a weird buzzy feeling that went along with it. the biggest reason that i think it is a physical plumbing problem is because it started to manifest a couple of months before my last relapse(the relapses have stopped now as we have found a cocktail of drugs to lessen my overactive immune system). it started as a grinding pressure y pain in the head of my penis when i achieved erection and my penis started having the end curve to the left in a dramatic way. i have always been a real ‘straight shooter’ if you know what i mean. LOL it was weird….i could still cum but the feeling was hard to reach and the cramping feeling got fierce. it got worse to the point where i was getting a cramping feeling with erections in the base of my penis as well. at this time i was a pretty sick boy and wasnt in the mood to be masturbating so i was not aware when my ability to orgasm left me. suddenly when things got better i noticed my penis head pointed up now intead of straight and my penis head seams to remain completely soft. now my neurologist sent me to a sex doctor who immediately blamed it all on the NMO, saying that the nerve signal messing was keeping me from orgasming. i believed her and the wife and i approached the problem in a scientific way and started exercises designed to reawaken my orgasm. i feel and have found that with work we can overcome almost anything. now my wife and i noticed something in our daily play to try and reinvigorate me. i have lost at least 2 1/2″ from my penis and the head no longer gets hard at all! the rest of my staff gets ginsu knife hard but my head is all small and floopy. now i am gonna postulate my ideas on what has happened. if i am wrong in my suppositions please correct me and if what i am saying makes sense PLEASE let me know. i think the cramping was due to some damage happening to the ‘plumbing’ that supplies erectile blood to the head of my penis. i am having problems orgasming because the head of my erection no longer engorges thusly not allowing all the nerves in the head of the penis to ‘come online’ so that i can have an orgasm. it only makes sense that these nerves would be ‘turned off’ while the penis is unerect, otherwise men would have a hard time getting anything done with our soft penises rubbing themselves to orgasm every 15mins or so on our own thighs and pants. so obviously some mechanism keeps the nerves ‘offline’ till the tissue becomes engorged. and my tissue seems to not be getting engorged anymore! my biggest problem besides the orgasm is keeping the erection for any period of time as most of my penises feelings are now more in the lower staff and base when erect so my penis has a hard time keeping the level of stimulation up enough in intercourse to allow me to stay erect for long periods. what i think happened is a feeder tube that brings blood to the head of my penis has become ‘plugged’ somehow, whether from scar tissue or an injury or just a body screw-up that sometimes happens. i think that if i can get to someone who knows what they are doing that this can be checked….perhaps by ultrasound. and hopefully the problem can be fixed. i mean all it should take at the most is a lil surgical repair-work on my ‘plumbing’ so that blood will fill the head of my penis again. what kind of specialist deals with this kind of stuff? can it be done? i mean they reattached bobbits penis and he went on to use it in porno….this surgical technique should be well understood shouldnt it? what do i ask my doc about it? my family doc is awesome and very caring but he is also aware of how specialists sometimes take the easy answer for whatever reason and dont really dig into a prob. they keep telling me to just relax and deal with a nonsexual life. BUT that aint gonna happen as long as i can keep myself trying to heal myself(with my loving wifes help).
so please help me. i am so frustrated both with specialists that wont listen and with the fact im becoming so over-ridingly horny that im about to die and it is making me very depressed. VERY depressed. is what ive postulated possible? is it fixable? please help me!!!

Liked by Mystyk


Native Floridian

Posts: 175
Joined: Oct 15, 2011
Posted by @nativefloridian, Oct 24, 2011

TMI on the details…sounds like you need a good Urologist.


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Joined: Oct 22, 2011
Posted by @mystyk, Oct 24, 2011

sorry aboot the TMI but i find with any medical prob it is best to be very clear and open aboot things! this is not my first medical emergency and the first one would have gone much better if i had opened up and was clear aboot everything that was happening. i figured a urologist is probably the way to go as they are the ones who deal with the plumbing probs. the reason i asked on this sight is cuz my neurologist was trained at mayo to deal with NMO and is the only doc in western canada to do so. i figured the mayo sight people would know more aboot the NMO as well as you have an ED clinic. i have a docs appointment next week to set up a referal to a specialist and then i have to see the specialist a couple of times with lotza testing and that takes lotza time here in canada(the only downside to our health system by the way and if this was a real emergency i would be seen quick. this is considered for now non super emergency so will take months) and i really need to know now b4 i do something silly and react badly to all the stress im feeling, is whether this is possible and if it can be fixed….
the right answer can really take my stress level down. i have found to much conflicting info online to believe any of it(most seems to be put out by online companies trying to sell me viagra or some such nostrum) so i just need some open and frank discussion of what might be the prob and if it is fixable!!


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Joined: Oct 22, 2011
Posted by @mystyk, Oct 26, 2011

so i have heard back from a couple of sources. no good news yet……actually some bad news….but at least its news. the mans clinic in toronto phoned me as the one here in vancouver has closed for now due to illness in the doc staff. they said that with the prob as i have described it they would have sent me immediately to a urologist and that delay in these can cause it to be permanent…..
well gawd…..just what i needed to hear. BUT i then talked to my GP. he is a kewl guy….you could say we have grown up together. he took over my family docs business when he retired. my new doc was fresh out of medical school and only a couple of years older than me. we have a very friendly relationship. he is kewl. anyways he told me not to get to fired up about what the mens clinic said as it wasnt a doc i talked to but one of their ‘medical associates’ and that time should not be to bad a prob. its been aboot 18 months. gawd. this is awful this waiting to see if i am gonna be a neuter for the rest of my life. and people wonder why i am feeling so suicidal. *sigh* my doc has referred me to a local whom he REALLY trusts. my doc said that the urologist would refer me to another urologist who would know his stuff aboot my prob. more waiting…..more fear of being sexless. is very scary.
you know how some people have a talent for something….it just comes naturally to them? well im like that to a high degree with sex. since i lost my virginity at 9 i have strived to be the best at it i could be. i researched and played. gawd i was like that young pianist you hear aboot who is playing with big orchestras and such. i was a child prodigy with sex and embraced it. the lack of this is killing me. it is chipping away at who i am and leaving a bare skeleton behind….gawd this is so scary. anyways sorry to be whining on here…i dont think its the place….just feeling pretty lost right now……..

Deanna Constans

Posts: 11
Joined: Feb 10, 2011
Posted by @deannaconstans, Nov 8, 2011

You may find the following link helpful:
I recently met with Dr. Ajay Nehra in the Department of Urology at Mayo Clinic who specializes in male sexual dysfunction. It is possible that he could provide you a second opinion, should you wish to see another physician. If you wish to schedule an appointment at Mayo Clinic, you can call one of the numbers listed on this link.


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Joined: Dec 15, 2011
Posted by @sharon518, Dec 15, 2011

what about penis implant. Their are a few different types

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