Extremely bizzare penis/genital pain and problems countless symptoms no answers!!! This may all sound unbelievable for what you are about to read but all a real living hell for me.
28 year old male. Circumsized. Sexually active In long term relationship. Tested for stis- negititive. It all started approximately 8 weeks ago when I noticed a slight tingle in the tip of my penis when showering, a week later an explosion of symptoms followed and linger to this day where It baffled both I and medical professionals alike.. the symptoms are.
-Frequent urination
-Sore/sensitive bladder
-Extremly irritated,painful/over sensitive penis tip( rubs constantly against anything and feels like sandpaper,unable to walk properly or even walk in tight clothing or jeans etc, even in underwear it is hell)
-Penile tip has changed appearance, discoloration(goes white sometimes, sometimes red)Redness around and underneath uretha which has a few bumps which the urologist has ruled out as anything of concern,there is a permanent red mark on top of the glans , glads skin looks wrinkly not dry though?. Bottom of glands feels cold. The temperature of the glans gets very hot at times though. The skin it's self almost feels mushy and marks easy when pressed against underwear. The tip will swell sometimes when flaccid if that makes sense, tingling and shotting pain is also felt.
-penile shaft looks and feels completely different. Skin feels and looks different.slightly darker in apperence, slight ache throughout at times .looks shiny and stretchy. Becomes hard or swollen in flaccid state depending on how it feels.It is much flopper and hangs more, skin looks wrinkled more and shows some indentations with redness, shaft feels tender alot of the times and feels like something is stuck inside.you can see lines in the skin in errections when I rarely get them
-Urine will get trapped in uretha after emptying .This will be noticed especially after bending over. Sometimes urination can agravate my uretha .
- pain and discomfort in testicles especially right one . Skin on testicles looks different.
-strange odor and dampness in gential area . Oily shaft, scrotum and tip (this has soomewhat subsided)
- Erectile dysfunction, low libido.spontantus errections are non existent pretty much and when I do get an errection they are tight and extremely painful.the skin looks stressed as well, when errections do happen the penis kind of jerks as the penis stands to somewhat of attention not a smooth errection as one is used to. Painful ejacultion. Abnormal errections where the glans won't engorge and stay soft.
-Swollen groin lympnodes
-Pernium spamming
-Inner thighs feel like they are always rubbing and sensitive even though skin itself is fine
-Lower back pain
-Abdomanal pain and swelling
-Penis feels numb and lifeless alot of the time, it's will swell in a flaccid state if wearing jeans or aggrivating too much.
-The list goes on for countless more abnormalities I am suffering from.
I have been to the ED, countless doctors and a couple of urologists who have no explanation as to what I'm going through they claim everything is normal ( I actaully believe urologists doont actaully know anything to be honest).one suggested it was a testicle inflammation which prescribed me cipro which done nothing . I have read all sorts of things on the net but nothing quite adds up to what I've experienced here which concerns me alot. I am very suicidal over this and it has ruined my life in every way. help would be greatly appreciated all hope is lost .
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Lifesover
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Lifesover, I have some sympathy for you. Many years ago I started having pain in groin area,centred on left testcal but which also included my bladder. And I had lower back pain( and still do, but that's another story).
I also had loads of tests including ultrasound, and they also didn't find anything.
It turned out to be pain originating and referring from my lower back on the left hand side ( subsequent MRI scans showed degeneration in L4/5, including pressure on a nerve).
I had worried that whatever was wrong with me was in the groin area and it was that which was causing the backpain but, in reality, iit was the other way round!
Before i had that explanation/ diagnosis, i remember having become a bit obsessed with monitoring myself for what i thought might be symptoms but which were in fact quite slight changes in look and sensation which had more to do with having a busy sex life than anything else.
I'm not saying that any of my experience applies to you, but your post reminded me of the kind of anxieties and concerns i felt back then.
Hi thanks for the reply. Yes your right anxiety won't be helping me no doubt. I myself have a slight disc bulge picked up on an mri but it was said this would have nothing to do with my genital disfunction. I just can't seem to put my finger on what it would be. I've read everything it could be from cpps to even a odd silent type of conitual herpes attack though I've never ever shown any signs of that.unfounatley for me my sex life is nothing more then a distant memory since all this has taken effect.
I have a lot of the same symptoms. I am trying to figure out if this could be linked with urinary retention? Are you circumcised or uncut? Do you still have the symptoms? Could this be linked with genital herpes?
Nothings out of the question but I would say GH is very unlikely, i'd be more looking to a neurological connection, circumcised. yes I still have the symptoms, some have dissipated completely while others have lessened. but it lingers.
That’s interesting because I had them most of my life and then they disappeared when my frenulum reattached. My frenulum appears to have broken, which has returned the symptoms. I think it is caused by damage to the frenular artery, which circumcision likely causes. They have been doing research on circumcision. You would think that after all this time, they could find a technique to preserve the frenulum. I think it is possibly amputation neuromas. Phantom pains from amputation. I was circumcised as an infant and from the very beginning I always fussed over wearing underwear. The irritation. Do you have your frenulum? I have been wearing condoms with my own saliva to try and stop the pain. I love playing tennis, but these symptoms have shown me down. I feel as if I am handicapped even though I am not. They cut way to much off in my circumcision. On the underside of my penis I have all the tissue from the frenulum and underneath is scrotal skin. No shaft skin. It’s horrible.
Sorry to hear that mate, it may well be the problem in your case but I think mine is a lot different , though we are both circumcised, it could well have some contribution to this issue with tightening skin and nerves and shit, but I suspect the trouble lies elsewhere for me... no scratch that I'm confident to say that as along with my long list of almost MS mimic symptoms subsiding, these issues are too in a broad sense. my intuition tells me mine as either a brain infection or nervous system destruction or both. brain gut spine genital rectum connection, and the zero point is the brain.
You should look up: “conversion disorder”. Maybe we both have it lol. There is something called an overly sensitive frenulum. Also in general are you very sensitive to pain? I definitely am.
As the other poster talked about, it could be a nerve involvement referring from the lower back because those nerves run through and/or near the spinal cord and down through the pelvic floor and genitals. I would highly recommend finding a pelvic pain physiotherapist in your area and have them do an evaluation. They are going to be much more helpful since you have already ruled out possible infections etc. Go to pelvicpain.org and you can search for a qualified provider. Also there are a lot of resources on that site that may help you. Don't lose hope, there are practitioners out there who will be able to diagnose and treat you!
I have had years of pain as you describe but no swelling. Sensitively to clothing is familiar. I was eventually , after 8 years diagnosed with pudendal nerve entrapment. This is less common in males than females. In the past you may have had a blow or fall, some minor injury that sensitised the nerve and the the darn thing goes crazy. I had decompression surgery 16 months ago and the problem has eased to the point where I am off pain drugs and things continue to improve.
Diagnosis involved a nerve block injection. The problem is this is rare and few doctors will come across it in their working lives. I saw Dr Gteenslade in Bristol, UK on the NHS. There is M Robert, in Nante in France. Check others here for specialists in your country.
It is pain, it is a challenge in life. This will test your inner strength and resolve. Your life is not over but you do have a battle ahead, stay brave grasshopper.
Hey man, I know this is freaking you out big time. And I know that doctors and urologists are mostly clueless when it comes to this type of problem. Eight weeks seems like a long time, but it's just a tiny bit of time in your 28 years of living. So you must try and chill out to the best of your ability. When you start getting these painful crazy symptoms and Doctors can't seem to help you, it's only normal that you'd start to panic. But you can't let the panic and anxiety overtake you because it will. How do you stop that? Ask the doctors for some anti anxiety medication to calm you down, and ask them for nerve pain medications to try such as gabapentin or lyrica. You could also ask them amout amitriptyline and cymbalta which can help the nerve pain and the depression.
You likely have either nerve damage or tight pelvic muscles and tight connective tissue that is putting pressure on the nerves. You'll want to get an MRI of your pelvis which you can get done wherever you live. If that come back normal, then look up Dr. Hollis Potter in New York City. She does a special MRI of the pudendal nerve. You'll need that MRI next.
You must accept that this is a terrible thing that has happened to you, and you must now embark on a journey to get yourself better. It will likely take time.... many months or possibly longer.
Also, check out the website Pudendalhope.info but dont' let it freak you out further. Go there to learn about the pudendal nerve and for its links to healthcare providers near you who have a clue how to treat people with problems like yours. It can't hurt to look for a pelvic floor physical therapist there. If you're in the NY or NJ area, I can also help you with that.
Practical advice: get silky underwear! Sears sells a silky like underwear that's actually 100% polyester and sold under the name brand Covington. Buy a size or two larger than you normally would. Some guys prever going the opposite direction and buying tight briefs a size or two smaller to keep the penis in place and not moving. You'll have to figure out what works better for you. It's trial and error and involves spending money. You'll also have to figure out what pants to wear or buy new pants. Try them on at the store with the new underwear and if you try enough different brands on, you will find ones that amazingly don't rub the penis as bad or at all when you walk. Make sure to walk around the fitting room of the store before you buy.
If you start to develop sitting down pain, immediately start using a cushion or donut.
Let me know how it goes. First, get some anti anxiety meds like xanax along with the other types of meds i listed. Take it from there and let me know how it goes. You can private message me or if you want type back here on the board.
Been suffering with this for almost 4 years. I just gave you the best knowledge I've gained in those 4 years so please do yourself a favor and take my advice here.
That was excellent advice for this young man. He hopefully will listen to it. Thank you for being so knowledgeable. Do you live in the New York area? Deb.
Thank you Deb! I really do try my hardest to help anyone going through this. My intentions are from the purest place in my heart. I do live in the NY area.
Hi. Ruling out nerve problems and tension as suggested by the posters above It may well be a possibility. I had a thought for a while it could be somewhat kind of reaction or a type of yeast infection that has spread up through me via my partners hand or vagina? There is some kind of infection going on becuase my groin lymphs are swollen so theres got to be some inflammation pressent? She has had bladder infections in the past but no yeast infections I'm aware of allthough I have a compromised immune system at present so any bacteria may do anything to me given my situation.
Be very leery of dermatologist or any doctor prescribing steroid based creams, ointments, or lotions. They thin out the skin. Google it: there are thousands of guys on the internet who are sorry they used those creams.
Hey yes thanks for the heads up I also read that on a couple of forum about the thinning of the skin of those topical creams. Makes you wonder why urologists and dermas alike hand this stuff out. What I find more alraming is the fact these professionals in question never seem to suffer of disorders like we do it's almost like they are immune to it all
Them handing it out like it's candy goes to show you how not perfect Doctors are. You make a good point about them not suffering from this themselves. I'm sure there are some Doctors somewhere who are suffering from this, and when they figure it out let's hope they share it with us.
They have gotten somewhat better. I so wish I could tell you they got much better, but I can't lie to you. Finding the right underwear and finding the right shorts and pants to wear were the best things I've found that help. They minimize the sandpaper effect (and sometimes completely eliminate the sandpapaer effect) which it turn lets you focus on other things in your life. I spent a small fortune on underwear until i found the right kind. Once you have the right underwear, then go try on pants and buy ones that don't cause the sandpaper.
Did I mention that drinking alcohol helps? I found the hard stuff like vodka and gin the best. You don't need to get drunk, but you might need to get a bit tipsy so think about your situation before you drink around the wrong people or have to drive.
Thats ashame man but it's encouraging to see you battle on it gives me hope.Negative on the drinking there CronicPain1 sigh😑... I Used to handle booze fine but I'm battling a undiangosed auto immune dysfunction on top of this ordeal so booze is out of the question it just destroys me even more. God I'd love a drink now though.
Hang in there buddy! You'll get through this. Did you talk to your doctor about gabapentin yet? It's not addictive, been around forever, and most doctors see no harm in giving it a try. It might help you.
Hey man.Yeah tried gabapentin but no success really .I've tried all sorts of muscle relaxants too. I think your suggestion of proper under garments and pants are a start in the meantime while I try and get through this. I'm off to the nueroligist this morning for my follow up and I'll be making a good mention of all these problems. He may shed some insight to it all. Fingers crossed
Hey there CronicPain1. No success with the nueroligist he pushed me out of the room within 15 minutes and carried out the same pathetic basic tests as last time he rambled on about how sorry he wwas I was dealing with what I was dealing with and waved bye bye(this nueroligist is the top dog in my city). I've been put in the too hard basket but I wasn't expecting any effort from there part to push the urgency to get to tthe bottom of it all. As for the gabapentin i didn't stay on it for long Im fearful of anything running my immune system down to much when no one knows what is going on
Sorry to hear the neurologist wasn't helpful! By the way, I happened to stop by Sears today and they no longer carry the Covington underwear that I suggested to you. But the good news is that they have an identical underwear sold now under the more familiar brand name of "Joe Boxer" The tag reads "2 pack Micro Knit Boxers" and you can probably buy them online at Sears or amazon if you're not near a Sears store. These would be the 100% polyester (but feels like silk) underwear. Again I suggest buying a size bigger than you'd normally buy for that extra "room" to minimize friction rub and all.
I'm thinking of trying gabapentin again. I only ever gave it a brief try. I'm wondering if I need to take it for a couple of months before it really starts to do anything good.
Thanks for informing me on the underwear buddy. Yeah appenrently you can bump the gamapanten right up to mega doses although they suggest at a higher level dosage and strength over longer term use if you want to stop it you must taper off it very very slowly as it can cuase sezuires my doctor informed me. I think it was originally designed as a anti sezuire med but don't quote me on that one I'm wrong about a lot of things😁
I'm always really careful about tapering off of a medication. Sent you a private message.
Hi, I've had pretty much identical symptoms before. I fully know how stressful and depressing it is.
All I can say from my experience is that once things have been eliminated from an Urological side you should consider seeing a Neurologist for assessment/tests, if you can afford to.
I've read other people with this condition have had some relief with Amitriptyline or Pregabalin.
I know how isolating it can feel, especially when doctors don't find anything. There are others out there who have similar symptoms - I'll try and find a forum thread I read a few years ago for you.
And yes, I know the sandpaper-glans feeling...
Keep flexible and supple if you can, by stretching your back and core muscles.
Hi, I'm a female so don't have experience of this specific issues, but do have pudendal nerve problems. I am finding trigger point physiotherapy helpful. I'd suggest finding a pelvic floor physiotherapist. Also check out David McCoid. He has a website. He had pudendal neuralgia and penis pain for 14 years before curing himself through Restorative Exercise and now helps others to do so. Best of luck.
Any updates from anyone?? Has anyone had any improvements? I wish people would post more frequently and work together to help us all figure out this weird problem we have. It's really disappointing to check in here often, to try to help people, and to find no one responding. It's depressing actually.
Anyway, one thing new to share. Since our condition can fall under the term allodynia, I thought it worth mentioning that there is some studies that show statins (medications used to lower bad cholesterol) have helped some people with allodynia. I was wondering if anyone here is on a statin or tried that? If so, did you notice a reduction in symptoms?
Hi new to the forum but Iv been suffering these exact symptoms along with many more for almost 3 years I’m in 24hour pain and discomfort without any diagnosis, strange thing is reading one of your replies that alcohol works ... well that’s the only thing that I’ve found to relive my symptoms! It’s driving me insane Iv had hundreds of tests without any answers , today the doctors have found my ferritin iron levels to be almost 1000 4 times what it should be , to me showing I have an infection but what is it ???
Hey, is anyone still active on this forum?! ChronicPain, I believe I have some new info. Same symptoms as all others. Clueless doctors. If anyone still posts here... let me know.
Iv been tested for lupus , I have had rashes but they come and go and we’re more frequent at the start , had them on back of my knees & my wrists , another symptom I get is I constantly feel damp down there , the tinyest bit of moisture and my penis sticks to my scrotum I also get dribbling after urinating so this causes me a lot of discomfort! Another main symptom is all over body itching mainly back of my scalp and backs of my legs but it’s all over body it’s driving me nuts that and the 24hour low back pain can’t cope with it ! Iv got a referral to go and see a urologist just hope they find it soon and give me some treatment as I can’t go on like this I have no enjoyment living in pain 😩😥
Take 30 mins plus to go to pass stool in morning feel slightly better after
Leak urine after finishing urinating
Server body aches
Feel weak
Unbelievable Morning stiffness
Wake up trebling shaking
Feel like I'm shaking on and off
24 hour back pain
Pelvic floor muscle feels weird
Pin pricking sensations
Rashes come and go
Feel sick
Burning lips
Pin prick pain on face
Sore throats
Anxiety
Feel nervous
Sore eyes
Uncomfortable bladder
Sticky groin and underside of penis
Feel slightly better after going to the toilet
Itching all over
Hot and cold
Racing fluttering heart
Red rash on penis head with pink blotches that comes and goes never there when I want to show the doctor
Brain fog
I feel better when I’m active but still far from good if I sit about I feel 10 times worse , laying in a hot bath makes me feel slightly better also but dosent last long
No pain killers Work only alcohol but Iv found as this has got worse it takes more and more alcohol to stop the pain
I have been dealing with nearly IDENTICAL symptoms in almost every way. Such a long story... a brutally long story... which I’ll try and glaze over right now to give some sort of background for me.
My symptoms didn’t show up until 2010, however a large part of me feels that much of this may be due to a girl I dated back in 2007 for approximately six months. She came forward to me before we had any sexual relations that she was GHSV positive. At the time... I thought, ah that’s no big deal. Tons of people have that... plus... we will be safe! We will use condoms and that would keep me safe... right?! That’s what I was taught in sex education class in high school... what a crock of shit that was. Anyways... we went at it like rabits for about six months. Then I broke it off and found my bow current wife who we have been monogamous since the beginning. She was actually a virgin so there is no way in hell I caught anything from her. Anyways... fast forward to 2010. I was away at college and I got a call from my wife that she got some odd results back from her recent Pap smear. Abnormal cells were detected. I scratched my head while she proceeded to tell me that it was HPV. I freaked out! Completely lost my marbles. How could this be?! I used condoms... I was safe! Never ever was foolish. Only girl I never used a condom with was my virgin wife! So anyways... I stressed out big time. Left class... went back to my room and started reading up on HPV. How is it transmitted, what are the symptoms... yada yada yada. I read that it was spread through skin to skin contact. Again I though... how could this be?! I used condoms... I was safe. Needless to say my mind went straight to the girl that I must have gotten HPV from and I now assumed that I most likely must have gotten HSV of some form. Mind you, I previously got tested for all STDs including HSV 1 and 2 approximately a year after I broke off the relationship and I showed as negative. Anyways... within days of this terrible news... I started feeling sick. I started getting a pins and needles feeling in my groin, specifically my scrotum. The area proceeded to get very red, irritated, warm, sticky, and PAINFUL! I’m talking touching, rubbing, anything of the sort was EXCEUCIATING. Also I was SICK! Run down... flu... chills... headaches... you name it... I was down for the count. I must have missed a week of class thinking that this would soon pass and I would feel better and I would get it all sorted out. And while my flu like symptoms did subside after some time... the pain in my groin did not. My gland became so tender and painful... I could barely walk. It wa so bad. I could barely think straight. I went to doctor after doctor explaining my plight. They prescribed me creams like clotrimazole thinking it was fungal... or topical steroids because of some sort of dermatitis reaction... but I knew deep down this was not that simple. Basically what it came down to was doctors didn’t know so they called me a loon. They said I must me forcing myself to feel this pain because I was so stressed about my previous sexual relationship and how I felt guilty about the whole thing. They actually for a short while convinced me that I was making this up in my head and if I simply willed myself to feel better... I would. Welp... that was a crock. I’m writing this on my phone mind you so I can’t really format this to an easily readable format. So this went on for years... the first year was the worst. I never ever ever though I would contemplate suicide... but I got so far as to research all the different methods and what would be the most painless. I felt so alone. Nobody understood my very embarrassing problem... nobody could see the pain I was in... just nobody understood. I had many many crying sessions with my wife over how I didn’t know what to do anymore... doctors had no clue... and I was just in so much pain and discomfort... She gave me some tough love and basically said that only I can make up my mind to make the best of the situation. That I could either continue moping and depressed... letting my life go by... and be in pain... or try and make the best of every day... and maybe something will come along and you’ll find your answer and you’ll look back and be glad that while you may have still been in pain... you made the best of it. Needless to say... I chose option two. I had spent so many hours searching the web and forums for an answer to my plight... trying to reach out to other guys with similar non answered problems. What I found was a whole lot of what I encountered in the medical industry... if they can’t find a simple solution... well you must be making it up in your head. It truly gave me a new perspective on the medical industry as a whole. I spent so much money on five minute doctor visits... it pains me to even think about. So anyways... I never found a solution to my problem... however over the course of that first year... I did make improvement. From the time it first came up... to my first anniversary... while I was still in pain and discomfort... it had improved a bit. That gave me hope that in time it may just go away... and I will feel like how I used to feel. I tucked my head down and I just plowed through for the next few years. Tried not to think about it... tried not to dwell on it... and just pray that in time... I would feel better. At this point I had convinced myself that what happened was an atypical HSV outbreak which had damaged the nerves down there. And that over time... the nerves were healing or calming down. Even though my blood tests showed negative... I was/am convinced HSV was the cause. So fast forward a couple years... I would say in 2014 is when I really stopped noticing any of the discomfort... I mean really boys and girls... it slowly just faded. Over the course of a few years... what had started as the most unbearable pain of my life... was pretty much gone. Life was good again... and I chalked it up to a fluke primary outbreak of HSV with no sores or blisters. The HSV must have damaged the nerve and caused me all that pain. That was my conclusion at least... even in light of negative blood tests for HSV. The blood tests suck for HSV by the way... I hope everyone knows that on here.
I’ve been so busy lately, I keep meaning to finish my story. But for now, I’ll just lead you guys down a possible path for all of our issues. Something called a Tarlov Cyst. They can develop anywhere in your spine, but typically down in the sacral area where the nerves that support things like our manhood reside. If you haven’t done so already, google them. In my never ending quest to cure my problem... I had an MRI of my lower lumbar performed. They didn’t find anything wrong except an “incidental finding”... the Tarlov Cyst residing at S2. The vast majority of the medical community believes these cysts aren’t a big deal. They can very much be a big deal. Go get an MRI and make sure you get a copy of the report. Some doctors won’t even actually tell you the incidental findings. Anyways... i will post more later... but I believe I have found the answer to my problems. If I could get lifesoved to let me know if he had a back MRI, we could really be onto something if his showed Tarlov Cysts as well.
Dgm5158 and the original poster, I have been dealing with very similar issues for the past 9 months. I was a very healthy person and for this to happen to me at age 25 is a very frightening. At the beginning I was told it was prostatitus and had a laundry list of syptoms just like you which have fluctuated over the past 9 months, the worst being pain in my rectum and not being able to have a full erection. I have seen every dr I possible can, and have been prescribed everything from antibiotics to gabapentin. However they have not taken away my issue. After it all I am now left with a pain near my rectum and perenium, testicular pain and numbness, twitching nerves in my legs and severe depression. My entire family is very concerned and gf are very co bnb concerned but just dont understand that drs appts. are not helping. My life went from being amazing to wishing I never was given it. Everyday is s co start battle not to end my life. Mostly bec I dont want to see my gf who I wanted to marry, and family suffer the rest of their lives with such a horrific incident. I am to the point where I'd rather not live so I dont have to cause them pain forever with them seeing me like this. I fight everyday to keep going but seeing no end in sight is the most frightening thing I have ever experienced. Can anyone here please respond and update their situation. I loved my life and do not want to take it from myself... please shed some light on this and leave an email I can contact you at.
Hey man, I’m still around. Don’t end it all man. I thought the same and even went so far as to research all the different ways to kill yourself. I’m glad I never followed through with it. Let’s talk it out and try and figure this problem out. I have made connections with numerous other guys with the same problem. We can’t give up! Keep your head up. Do you have a Facebook? I find that an easier method to communicate.
Hang in there man! ive had a lot of the issues similar from the original post.. i had the golf ball feeling in my anus testicle pain, penile numbness on and off experienced changes in my genitals.. was horrific. Went to docs, urologists etc no hope. eventually had a herniated disk on my L5 S1 along with these symtoms. Had a the op with success. A lot of it seemed to have settled after a few months.. i could live with my changes until about 2 months ago i started experiancing texture changes and weird sensations coldness in my penis etc now on another journey to get it right.. also has dramatically effected my life. I feel your pain. Dont loose hope.. some symptoms do go away by themselves.
Just found this thread through a google search and thought I would chime in since I've been experiencing similar symptoms to the one's described here. So I'm male, fit and healthy EXCEPT that for the past ten months I've been experiencing constant genital numbness and bouts of constipation as well, none of which I had ever, ever experienced before in my life. Onset of symptoms was SUDDEN, OUT OF NOWHERE!
After about a week of panicking (made worse by visiting Dr. Google) and no improvement, I began to seek medical evaluation to get to the bottom of all this. The first order of the day was to get an MRI of my lumbar spine. The findings were not of significance. Apparently I have a small disc herniation that I've been told by several doctors (including a neurosurgeon) wouldn't be the cause of my issues.
From then I started getting labs to rule out medical issues that could be possible causes including diabetes, PSA, testosterone, hormones, B12 deficiency, urinalysis, and so on, and thankfully my results were normal. Then my PCP thought it could be an STD (since I disclosed I had been sexually active particularly in the few months preceding onset of symptoms) and wanted to check me for herpes in particular. I was sort of thrown off by that because I've never presented with lesions down there and have otherwise never had cold sores orally so no reason at all for me to think I had a herpes infection.
So I get the labs for the STD check and I was pretty confident I would be clear all the way. The herpes blood test took the longest so I actually got my other STD check results sooner, I was happy that I was HIV negative and free of chlamydia, syphilis, and gonorrhea. But then I get the herpes result and BAM, I'm positive for TYPE ONE (negative for type two at least!). I was shocked and devastated (typical reaction to learning one has herpes). So all my PCP tells me is that there is no telling when symptoms will subside as it's a lifelong infection. She prescribed antivirals for me to take for a week and sent me on my merry way. She was rather cold and short about everything (also typical of practitioners that diagnose herpes).
So about two months pass and there are no signs of improvement. During that time I was diligently reading and researching all things herpes (turns out I barely knew anything about it like many others) and basically did find that my symptoms could be related to herpes but that it is unusual. I tried to locate other herpes sufferers who had the same presentation I have but it really was like finding a needle in a haystack.
With no visible outbreak and only a positive antibody test for type one I began to second guess my PCP and went to another primary doctor who started to refer me out to different specialists. I saw a urologist, two neurologists, and a neurosurgeon. I even went to a sexual medicine doctor. None of them could give me an answer. The urologist suggested my issues were being caused by an underlying psychological issue and overall most practitioners I saw have been very nonchalant about my symptoms.
Needless to say, the past ten months have been a living hell that I never thought I would live to experience (I guess nobody does). I definitely had other symptoms in the beginning and most have subsided or come and go. But my chief complaint remain and they have totally flushed my joy and quality of life down the drain! I'm racking my brain trying to remember if I injured myself prior to when the numbness began and I do remember doing some yoga stretches a couple of hours before symptoms arrived. I was doing a sitting forward bend and remember thinking I went too far in the stretch because I felt something in my lower back. I didn't feel pain or stiffness or anything like that afterwards and I've been doing yoga for ten years without problems as I'm well trained and always careful not to push too hard with the range, but I guess I wasn't thinking this time. IDK, maybe that could have been it. If it's not my spine, maybe I stretched my lower back muscles and caused some kind of domino effect in my body. I've read of pelvic floor muscle issues too that could be caused by lower back issues.
I could go on and on, and I guess if any of the guys that posted on this thread could give me an update I would really appreciate it. Yes it breaks my heart when I read that some people go for years like this. But I guess I'm trying to see if they ever got to the bottom of their issue. I'd hate to think that I'm at the mercy of a virus. I still think this is related to my lower back but not my spine since MRI didn't show that. One of the neurologists I saw further did a nerve study from my lower back all the way down to my feet and those results also didn't show anything of significance.
Thanks for reading all that. Long painful journey and what bums me out more is that now I'm getting close to the year mark and I obviously had really hoped that by now I would be back to normal.
I am going through the exact same thing as you. Is there anyway to reach you other than on here. Or has there been any updates on if your feeling any better
Hi - I’ve seen similar symptoms- mostly the glans penis one stands out and some back pain.
The shaft of the underside stays shiny and irritable.
Urologists say everything is fine and so do the dermatologists.
I had a urine culture test done and I had bacterial infection but my White Blood Cells were normal which confused the urologists and everyone’s left the problem as is.
It’s been over a 6 weeks now and the problem has reduced but hasn’t gone away and still feel the sand paper effect now and then.
Have you had any progress? Any discovery? Any help would be much appreciated.
Having the same symptoms, shiny glans, sandpaper effect, can’t really walk around with it rubbing on something and getting inflamed. I’ve tried multiple steroid creams, anti-bacterial creams, lotions, urologist, dermatologists and no one can figure this out. Been tested for all STDs, no positives. One day I woke up after masturbating the night before with UTI symptoms, very painful ruination at the tip. Got tested and I didn’t have one. Went away after a day or two. And they say it all looks normal. Next stop is an MRI I guess.
Do you have any idea what might have started this problem? Is there any pain on the shaft when wearing underwear? Also, stay away from steroid creams!!!
Any luck there Spartan4532? I have had symptoms for 8 months now ... I was detected with a UTI but same irritation of Glans persisted even after the UTI was detected and cleared.
Still have the same problems and haven’t been to the neurologist yet. Did an MRI help?
Original poster here. After a very long hiatus due to much more going on in my life then just this problem, I've decided to come back to the forum after checking unread messages. I've also apologized to the appropriate parties I was in contact with long ago for dissapearing, though it was not intentional. I did message others back who asked for advice recently but I never heard back from them, which is cool, it's not the law to respond lol I just hope they sorted their problem out. Any way as I say, the leave of absence was due to the fact I had much, much more going on in life then just this shared problem we all seem to have. Righto so important issues now. Some symptoms have subsided others have emerged. I have a novel to write on my experience since leaving but I might just leave that blank in the meantime. I don't have enough time to write it all today, just that the tightness has subsided as had the aching. The sandpaper effect has diminished somewhat also. Though the bowel/colon/digestion/abdominal problems still persist, as well as many other new symptoms that randomly appeared. If this experience has taught me something, that's western medicine/science doesn't know anything more then what their little text book tells them exists. I have no faith or trust in western medicine whatsoever anymore, neither should anybody else. It's not just this problem I'm talking about, but also my unidentified neurological affliction I'm having to deal with at the same time. I'd love to know if anybody else also has a compromised auto immune/central nervous system problem they are combating as well as this. I think the 2 in my case are working hand in hand with one another if not the CNS failure is causing the pelvic disorder in my case. Anyway that's my take for now, I'll report back if any interest is generated from my post, thanks.
Hello! I'm glad to see that some of your symptoms have subsided! Do you still have urinary problems? Problems with the urethra still? I've been going through something similar for the past 8 weeks and it's been making me go crazy. Pressure in rectum, tingliness in urethra after I pee, strange sensation in urethra if I stretch my pelvic area, difficulty getting an erection (most likely due to stress and anxiety), and some occasional leg and groin pains. Urinalysis is negative and I just had an ultrasound done. Waiting for the results. I'm also 24 years old.
Hi, Centralmana thanks for chiming in mate, A million apologies for your suffering but what difference is that going to make when you just want a solution right lol? So anyway, it sounds like we have some similarities yes. Did you have anything happen before this all blew up Centralmana? Please write it all here, I'd love to hear your full in depth story if you care to share. Anyway, so to answer you questions.. .A yes and no, the urinary problems have diminished somewhat and it doesn't feel like someone has jammed Satan's fiery red hot poker up my piss hole after going to the toilet, so there's a bonus. I still get the odd inconsistency's and dribbles now and then but this is reflected possibly on how strained the bladder and urinary muscles have gotten through the day depending on how often I had to go to the toilet repeatedly in a short time frame (Maybe that happens with everyone. I don't remember my pipe functions before this hell sadly) B. urethra, I guess this falls under the response above just written to so not really. Now it would be interesting to see if your symptoms alleviate with time like mine have. Also I don't want to frighten you but as seen in a majority of these cases, the doctors won't help you and we have to preform miracles on ourselves, this is not to say they won't address your particular problem, it's just the western medical community don't actually know 1% of how the human body or mind works though they claim to, so don't get your hopes or expectations up is all I'm saying (FYI I've been battling western medicine with my nuero-disease on-top of these odd afflictions you and I share, You're a very brave/tough individual it sounds Central. Now I can't be sure, and all though stress and anxiety doesn't help, It could well be the reason your not getting a rock hard dicky is because things just aren't ticking over like clock work, whether that be improper circulatory function, bound up nerve endings and so forth and so forth, the reproductive system is very touchy-feely (no pun intended trust me) but there's a fine line between flawless operation and malfunction. It saddens me that so many men that have erection problems turn to a little pill, instead trusting their man made gods in lab coats to fix there issue, when most of the time it's another underlying health problem causing their little richard, not to stand to attention when something excites it. Critical thinking and in-depth analysis seem like a long forgotten in-built human tool it sadly..it's easier to turn to someone else for easy answers. Right, now. Getting back to your response, I too had an ultrasound done, they found nothing, but oddly I was 6 months pregnant, which isn't very common for a male but anyway set aside from that (joking obviously) they found no urinary problems or obstructions etc etc, I was getting the frequent buzzing you speak of (like nerve tingle) that too, went away on its own accord (and no it wasn't a Honda either). I speculate it was aggravation of everything else going on down there. Now next question, and If you don't want to answer this that's fine but I think were all big boys here, what are your sailors doing? seamen consistency or texture, color etc tells a lot about what maybe or may not be going on down there, Not trying to be crude here but for strictly medical purposes, If you can get your cock to rise from the dead like Jesus Christ himself, Put on a bit of porn and flog your log (or ask your significant other to do it for you) then check out what your seaman looks like. To give you an indication, mine was very watery and had a yellow tint and the consistency was poor around the time my symptoms were at there worst. It's looking much better now and more of the traditional creme egg variant which goes along with the trend of my symptoms subsiding in a sense. Again I'm not trying to be gross just honest as we are all just here to help right? anyway I look forward to hearing from you if I do, cheers mate. Stay strong in the meantime.
Hi Lifesover! I read your original post! As i am having some of the symtoms your described above although i dont have any sort of the burning etc... what has happened to me starting about 6 years ago is i noticed the skin thinning on the tip of my penis and eventually the shaft and scrotum followed by some curvature and loss of sensation & hard flaccid shaft. Few months later my shaft started to feel numb and the numbness would come and go, glans would stay soft during erection, less ejaculation volume.. went to a number of urologists and they couldnt find anything. At the same time all this was happening i was developing sciatica.. had a mri and found it was a severe herniated disk on L5 S1. Had the operation and it was succesfull and all the other symptoms where still kind of there but seemed to have settled & i could live with it until about 2 months ago i noticed more skin thinning shaft & glans almost turning white and skin has this very papery texture.. also coldness in the area like theres no blood flow. erection do come by but less and less each day (could be stress depression along with the physical symtoms) any ways had all the hormone tests done testicles scannned (everything came back normal) and uroligists say theres nothing i can do but maybe see a endocrinologist. seen another GP who is going to help me look further into this (he could understand the anxiety and depression im going though) He believes it could be a Vascular or Spinal problem (who knows) I find my symtoms very Bizzare & unwelcoming like yours... this is all i can give for now.. but seems somewhat related to what you have. let me know if you have had any luck with anything?
Thank you so much for pitching in mate. Wow. You mentioned a herniated disc, now I can't remember whether I've stated throughout this thread or not but that's exactly what they found in my MRI and passed it off as nothing. Now with further research I discovered myself herniated discs have a direct link to debilitating neurological illnesses such as MS and Parkinson etc etc.. I think it's more described as a tell tale rather then a trigger point, sinus problems also have a direct link to suspected deep seeded neurological problems brewing, funnily enough I have both spine problems and sinus issues. I've had luck in a sense it's more tolerable to live with but something inside is telling me this is more of a product of a CNS disorder rather then just a nerve, STI or general skin disorder by itself, as I've stated previously the human reproductive system is crucial in telling what the rest of the body is up to. Now back to the spine.. it's no wonder the spine comes into this topic time and time again, it's the bridge/handshake between the gut and the brain its the life line linking the too, I'm not surprised it too suffers. Natural approaches are the only way here, it's roll of the dice even in a natural approach but the doctors don't know unfortunately whats wrong with us even though they claim to know it all, it's been proven..they don't! so with that said it's up to us as previously mentioned. Now here's a couple of things to look at the meantime, your posture. a poor spine position to me, would potentially cause circulatory dysfunctions. I've been monitoring mine and whether its placebo or not i think its working even my bowel motions are much less painful since attempting to hold my self correctly, the pelvic exercises may have worked for me? maybe I'm just making shit up with the CPP exercises. but the posture I think is working . Groin stretches worked for me I think? the stiff flaccid eventually went away for me it maybe partially there at times but what I've been doing over the past couple of months is manually moisturizing my cock and balls to almost help bring back the lost elasticity we tend to suffer, the skin does look minorly effected by scare tissue as a result of when the skin kept coming off (this lasted shy of a year) but that stopped a few months ago after a few months of keeping the skin supple which to me is obviously glands/ skin problem, so the issue is coming from our immune system/ CNS more then likely our meat n two veg is paying the price for it instead, id much rather this particular disease attack my toes instead of my cock but that's the nature of the beast it seems.
Thanks so much for the reply! Now you talk about posture.. now i have never really had good posture & is something i need to work on.. i usually sit slouched. CNS could be the issue aswell like you said. My Hard Flaccid comes & goes and at times its gone for weeks ive kinda gotten used to it. But the physical structure & skin (the look & feel has changed so much over the years. less sensitive, curvature uncomfortable, pale, softer glans thinner skin. Best way i can describe it as atrophy. My penis & scrotum was always full of life very sensitive just everything was perfect in the past.(I forgot to tell you in the original post i had golfball feeling in anus, stomach, testcle pain along with sciatica). A urologist told me thats just age and lack of blood flow to the area and put me on some generic of viagra im just so puzzled coz i seriously think this only happens to like 1 in a billion males... haha. I can still have intercourse & orgasms are still fairy good but something just doesnt feel the same. erections dont come by as often as they did.. whereas they did just 3 months ago i am now on Cialis & antistax to increase bloodflow to the area (still waiting to see if it makes a difference with the paleness and texture changes. Im going to see one more urologist who my GP said is more scientific and will look into the matter more in depth He also thinks its got to do with my spine (now you mention CNS could be the cause).. after that ill probably go back to a neurologist.. as i am having sciatica issues again. I doubt i have vascular problems.. My heartrate and pulse is fine, cholestral fine.. sugar levels i think are fine. Like you said i guess its up to us to help ourselves in anyway we can. Maybe diet, healthier lifestyle, posture etc? although i have lived a fairly healthy lifestyle & exercise. seems these symptoms actually came on when i was the healthiest ive ever been lol. I wanted to ask? did you have any real physical changes to your genitals that seem permanent? Theres a guy who had severe hard flaccid hes channel name is Greg HD (just type in Greg hard flaccid and it should come up) & has some very useful info on stretching etc although my hard flaccid doesnt seem to cause me any real problems at the moment.. otherwise i would go full mode into curing that. Anyways hope to hear from you soon.. ill let you know what the urologist tells me & any info i can get. But you really got me thinking on this CNS.
Thanks for the read. I could write another novel in response but I'll wait to hear back from you on what your specialists say and wether you have any success in the meantime. Who knows you might catch a lucky break I sure hope so. Also it'll give me a bit of time to see if I can chime in about your detailed list of symptoms as there's about 2 years of research locked away in this conciousness of mine it's just finding the that knowledge on command is the tricky part. Talk soon man.
P.s sorry forgot to add yes the pyshicality of my bits and bobs did start changing.. colour, texture all sorts as well as when it started to get errect my shaft would look like an hour glass , full errection would look ok but 'half cocked' it would look odd.. maybe my shaft looked like an hour glass because it was taking it's time to to get a proper errection? Who knows? But yeah in the early part even my knob wasn't properly filling out with blood either. Things are better now but my symptoms were pretty bad and I had the other nureo symptoms stacked onto of what was going on with my under carrage anyway I was up shit Creek without a paddle still am in a sense anyway.. look I won't hold you up, drop me another line in future soon when you get your results back from the docs I'll be checking here, hear from you then.cheers man.
yeap i have the hour glass thing too! Funny thing is i had the hour glass thing once or twice when i was in my early teens it dissapeared until about 20 years later with all these symptoms... can you fkn believe it... i had a lot of self blame with all this.. thinking could have i prevented this all this sht in my head going mad trying to figure out what was happening. but i think it is just our bodys to be honest.. everyone is different and we all have different problems some of us i guess just super unlucky to have this happen to our jewels.. also this had had a huge effect on my life. ill let you know man thanks
It does destroy lives yes. It's the make or break of you in some cases. but it's not our fault we suffer this curse so we can't blame what (like you said) our bodies are doing. Yes definitely do write back soon. I'm trying to involve myself a bit more in here to help others if I can, even if it's just to throw the ball around and talk about shit in relation to this stuff now that I'm in a slightly better frame of mind I've made a difference. Stay strong in the meantime brother, but i know you will. PM me if you need any other info should you feel the need. Cheers Shealth.
Good to hear you are somewhat better & in a better frame of mind. I have days where i feel kinda okay about it and just kinda like fk it i cant help it so just gotta deal with it coz theres so much to do in life. luckily im in a good relationship & my gf understands & supports me. My symptoms still feel like they getting worse. The beggining stages of this problem years ago was a lot more associated with numbness pain & physical changes.. and yea i really got used to it.. eventually never bothered me anymore etc.. shit came back to haunt me now its like there is no bloodflow causing paleness & skin changes coldness mainly at night.. funny thing is my shaft is still rock hard when i do get it up so dont know if it is vascular.. head only fills up if i put a bit of pressure on it. Also everything feels way lighter then it used to. going to see the urologist on friday next week for another opinion & see where to go from there. Cant get to the endrocinologist till the end of the year.. i really dont know what they gonna find cause my male hormone profile is fine.. my uro just told me that who i gotta see.. My gp is concerned its spinal or vascular (i think imentioned that) He's possiblly the best doc i have been to.. coz he really listened & wants to get to the bottom of it. Im not gonna give up, going try ways to fix myself or just deal with it if i cant find any true awnsers..thats really all i can do. Anyways like you said "up a shit river without a paddle" made me really laugh coz thats how it feels and the best way to describe it. Ill let you know soon brother. thanks for responding to all of this.
Howdy Lifesover! Went to the Urologist today... Obviously i wasnt expecting to come out with a fully rejuvenated cock ha. But yea i told him all my symptoms changes etc. He did a full check up including a color doppler ultrasound.. shows all the blood flow is normal in my flaccid state and again everything looks and feels normal no sign of peyronies . I did mention if he had a previous penis to compare he would notice a huge difference.. He told me its all age related then.. mmm i must be really unlucky then to age in 3 months then lol. He said nothing could be related to my spinal injury (i need to hit physio again hope theres not another buldge) i still have the pelvic tightness which i think still brings on the hard flaccid at times .. will start some stretches again still groin pain but now think that is related to my varicele. A lot of this blew over even more when i got prostatitis (that has cleared) But yea really no awnsers. He said i could still go to the endrocrinologist if i think theres something underlying (maybe thyriod or pituitary gland?) Anyways just and update. for now its stretches, trying to eat healthier, cutting out on the hard partying which i thought may have contributed to all this but actually i was better off then than i am now. Coz it is bizzare to have such crazy symptoms i mean then every male would be heading off to the docs & stressing out & all that shit if it was normal. Some days are better for me some worse (like lifeless down there) just gonna keep fighting on. If you have any more info i would love to hear?
Hey man thanks for the update. Hah! "rejuvenated cock", love it. Anyway, I think you know more then your specialists, your suspicion that it could be related to the thyroid or pituitary gland can not be ruled out, just think both of these, time and time again come into play in major CNS disorders across the board. It was rather irresponsible/careless of that urologist to suggest that the spine has nothing to do with your problems, that's like telling a paraplegic the only reason they can't walk is because they didn't get a good enough sleep the night beforehand.. no the spine is crucial, I think that urologist might need reminded the reason his cock bulges with excitement every-time he gets to groap and prod another man's cock and get paid to do it is because.. duh nerves and signals carried from the where shelth? you got it mate.. the spine, from the brain to the nether region visa versa... ok enough with the dirty humour! I promise.. right! down to brass tacks again. other then that ,my other useless advice I'm thinking issssssss well you've covered all bases with the physio/exercise diet thing. Maybe practice your breathing? that there has a lot to do with calming the nervous system down, we all forget to breath properly. I was guilty of it but it makes a world of difference I'm sure it has for me. Also letting go of those pelvic floor muscles every now and then, since in our case they are probably tighter then a nuns furry crotch kitten mitten, like just imagine... you know when you take a big satisfying shit in the toilet and when the last log ejects out of your cheeks, instantly your asshole constricts and pulls back like a turtles head recoiling back into it's shell? I think our pelvic nerves are in this constant state of tautness, which is whats probably heightening the feeling of pain and sensitivity and hard flaccid.
Livesover Thanks for the reply man! yea my breathing sucks i think with all the anxiety and constant tension in my pelvis my body seems all out of whack. When i first started getting symptoms years ago i remember everything was fucked. eventually i just said to myself after this last specialist visit i cant really do anything about it but just relax and let it all just do its thing and i actually did improve a lot but not 100%... but when new symptoms arise the whole stress thing gets worse again & im like huh again i thought i was all done with that then you kinda in this viscious cycle of stress n depression again. The stress doesnt start by itself its noticing the symptoms and then the stress follows and shit gets worse not like i think im actually making the physical thing happen.. i dunno its so weird. yea i think you got it man the CNS.. i knew something was up even in my teens but it only came out to get me in my late 20s. for me i could just have sex or masterbate when ever i wanted and as many times as i wanted in a day.. now its kinda like the period between is a lot longer and this changed over a few days. I guess i gotta be thankful i still have a sex life but still the frustation lingers in my head (mmm what it used to be). I guess all the specialists can only do what they can and we just gotta deal with it. Today im kinda more relaxed coz im thinking again theres nothing anyone can do n just fkn live with it and adust AGAIN to my new changes and make miracles from now on haha. Cialis is working somewhat but theres no ways im gonna stay on it forever. its weird coz i was always constanstly hard and again over a few nights things changed.... mmm age. anyways would lets keep chatting when you got time! its really helps talking about this stuff knowing it does exist. You have given me more info then anyone.. you should be in the medical industry by now Dr Lifesover. keep well man chat soon.
Definitely mate happy to chat anytime, it helps me just as much as you. Now reading your reply (and although I'm in the middle of doing this myself...) this sounds fucking stupid but hear me out.. do you have repressed issues that maybe contributing to your condition? I only ask because I myself have many deep seeded issues and working through them over a course of a long, long time (with in myself of course, I don't trust a therapist as far as i could throw them, never trust a person bearing the title "the-rapist" they will fuck your head, hence the professional title) it's helped me mentally, which in turn I think has helped physically. You've heard of pain conversion right? you've heard about how holding onto hate and shit like that can and has been known to trigger cancers heart attacks strokes etc.. I just wonder if that is a contributor to of our symptoms as well as the cns side of things. Now shealth i'll tell you right now mate. there's something to all this. I feel this is test of some sorts. It ain't just a roll of the dice or drawing the short straw in a cosmic game of chance accident kid of deal. I don't subscribe to any of that. I know a lot of people will laugh or dismiss what I say, I'm not religious or anything like that I just think we are more then what we are told we are and this hear is a test as I said, it could be one of the most enduring ones well ever have to face. Hear from you soon.
Thanks for the reply Dr lifesover! i dont feel i have any repressed issues.. but i have heard the wrong energies n stuff causing cancers etc (we can go into this topic) im not religious either. Its seriously just fucken weird man! Like you said yea maybe some kind of a test on us or some shit. Just gotta work on getting through it. I do find that all the weird kinda energies that i try to avoid come at me at full force and before you even know it you stuck in a pile of shit! haha. ill get back to you soon have a lot more to say.
You hit the nail on the head my man. Those energies and the people carrying them in some cases, will drag you back into the mud from which you almost broke free from. Now I don't so much believe as "know", and I know energies have a large part to play in the influential aspects of our existence. It's not so much what you can see but what you can't see or or hear but sense. The gut feeling, whatever you call it. You know you get that horrible feeling when somebody menacing walks into the room the whole atmosphere changes and you just want to get the fuck out of dodge? That's what I'm talking about, It got so bad for me I had to separate myself from 95% of my family (Ok I disowned them, a lot of shit went down and I saw them for the "demons" they truly were. terrible people can't believe it took me all of my 30 years on this god forsaken steaming shit pool of a place called earth to figure that one out) Anyway I moved out of town back into the country and I'll tell you being in touch with the simplicity of life and nature has helped me tenfold (I'm aware not everyone has the opportunity to do this) Driving back into the city every-now in then is like driving into the machine city on the matrix, its so cold, detached and robotic. I start getting panic attacks, I shit you not mate. Hey if you want to elaborate on the energy subject by all means let it out, I like to think this thread here is somewhere to shot some shit (Not literally of course, we don't want alert authorities and be put on an FBI blacklist) a forum where if you want you can talk about anything on your mind, cheers.
Yes well we've established the fact throughout this novel-sized thread our problems have a lot to do with nerve aggravation more then likely. Now treatments are one thing. Success and or lack of reliance on pharmaceutical drugs long-term is the most important thing to take into consideration here. it's not a one size fits all unfortunately, if it were we wouldn't be conversing in this very thread scratching our heads as to what the fucks going on and our man-made gods also known as doctors would have the whole thing figured out..buuuuuut guess what we know more then them it seems.
I agree. If i knew now what i knew then, I would go so far as too even refuse vaccinations. I don't particularly like being a human lab rat/life-long science experiment.
Yes. Best of luck. It's debilitating and depressing dealing with doctors. The NHS doesn't do chronic pain and I don't know if private are much better? We need to persevere, be strong and I'm sure we'll all get there in the end
Yea i know what you mean! can always feel when negative energy is around. your gut & senses tell you everything. Now the whole thing with medicines & shit yea we are like guinipigs/labrats i dont think anyone really knows what they really do to your body ... and i still use them same with the antidepressants psychologists prescribe to people and yet they all effect everyone different some people will fuck out when they go off them. street drugs i have used but not abused.. at first i thought they contributed to my condition but just couldnt find any relation.. like i said i was better off when i was using them with alchohol & ciggs was a whole mind fuck for me with all the changes pain and just plain weird symtoms... specialists, google searches, self blame.. just couldnt figure it out literally drove me mad. the closest thing is you telling me about CNS. Im still trying to get used to these changes which really feel permanent. First is getting rid of my anxiety which i think is helping. when you tell yourself you have something wrong it tends to get worse its like your mind is playing tricks on you. Usually if i ever have some sort of other sickness which i have had some serious issues i never really stressed... this was because it was of a different nature. I know there is so much shit happening in the world, poverty, cancer etc everyone is suffering in some way. Still doenst make me feel better about my situation. This does feel like nerve aggrivation to me.. sensation comes and goes when it pleases. some good days some bad although i have lost quiet a bit of sensitivity. anyways i hope you guys just keep positive and keep working out ways to improve physically and mentally.. its one hell of a journey that may seem mild to docs and people who have not experianced it.
Now I'm great at giving advice, piss poor at practicing it myself (and the award for world's biggest hypocrite goes to ...me!) But here I go anyway anyway OK so, you mentioned about thinking about the sad state of the world and other suffering? If you find yourself consciously doing this, try not to.. In-fact avoid current affairs and media related interaction at all costs. Thinking about this shit and what we can't do only makes us worse. people still die, get raped, murdered, wars are still started and the wrong party still gets into government regardless of us putting any thought towards it. The fact of the matter is the sun will still rise and a new day will dawn. Yeah I totally get what you mean about the hypochondria, it'll fuck you right up (uhh I've got a tight chest, oh well must be dying... time to go to A.E) Reading what you have jotted down above though, it sounds like you have got a really good game plan to begin with, I could sit here all day giving you pointers but at the same time I'm not much different to you and your mentally unhinged state given the situation, so i don't want to come off looking like a know-it-all asshole telling you how to butter your bread, while I'm still trying to look for the fucking butter and kitchen knife myself. But stay in touch man write back anytime.
Yea man! ive never really dwelled on the shit going on in the world. Just when this happened it made me think about it and people telling me to relax and stuff was really hard.. it just aint easy looking down and seeing your world crumbling for no apparent reason. Its all good. good to talk to someone about this who understands although we don't have the exact same symptoms but are somewhat related. Stay in touch
I definitely understand and you're right, there's no generic one stop shop for the symptoms we all seem to fall under, but the general pattern is the same (which is what counts) Anytime Shealth, feel free to stop by anytime and chat mate. Let me know if you need anymore help or just need to talk. I'm only a personal message away. Cheers man.
Thanks mate! Well ive got an appointment with the endocrinologist in October... the only time i can get one. You think it would be worth a try? Hopefully they can check thyriod or pituitary gland and some other hormones! who knows. Not to be negative but they will run a bunch of tests and still probably find nothing as this is of such bizzare nature.
I wouldn't say negative mate, you are just being realistic given your prior history in this ordeal. I completely get where you are coming from though. I've held that mindset before (in-fact I still do probably) but I guess the other way to look at it too, is even though they might not find anything, If you didn't go, you might be forever asking yourself "maybe I should have gone and they might have found something". Perhaps it's better to go through with something with a lack of expectations beforehand and be let down at the end of it (kind of like my long term relationship with my ex-fiance) Can I offer another pointer? In the meantime try and find yourself a natropath perhaps. I did about a year ago, made huge changes to my mental well being, one primary thing was I cut out red meat which in my case fucked with my iron too much (I still eat it once a month, I still consume pork and chicken daily though, she also said contrary to popular belief, some people just can't go vegan or alternative route no matter how many times they try, it's just not how they are made up, so shes very realistic in that sense. She wasn't one of these hippie freaks either, she eats MacDonald's once a year and drives a gasoline powered car so you know shes legitimate and not holier then thou. as many natro's are. Now you said you have done recreational drugs? no judgement i have too, but i would advise to keep it to a bare minuim and also keep over the counter meds to bare minimum too. limit the booze if possible, just with the hormonal changes it evokes by increasing estrogen hence alcholic males with man titties (don't be saint though, if you want a few, have a few im not the fun police) I personally stopped drink 2 years ago cold . and 5 years before that i was basically cold but had the odd one. (FYI i was an an alcoholic/problem drinker but i guess i mastered the addiction. I had no choice something happened in my life that forced me to stop drinking) Anyway, If you are still on the cigarettes stay on them. they are whats keeping you sane in the meantime. I know most people tell you to quit but they do not understand how the nictonie stimulant aids the body in these situations. I don't smoke anymore I was a chain-smoker and I tell you now I'm worse then I was on the fags health wise so go figure health freaks. (been quit nearly 2 years) so shealth, i stopped smoking and drinking and I don't feel any different really whats that telling you? science lies sometimes. Cheers mate.
Might do with going to a natropath and i guess the wait going to a endoc may be worth the try... who knows maybe he finds more alien formations in my body similar to what im experiencing. I dont do much drinking, drugs or smoking these days..hardly ever. I was thinking today "Who the fuck does this happen to?" Once person in every 3 citys ha? Still some days are more positive then others..although i know sex will never be like it was due to my physical changes(frustrates the hell out of me)erections do come more spontaneously when my mood has altered. Adapt and live with it i guess. If i have another break out i dont know what ill do probably go to the loony. this shit can really drive a person insane & others will never understand it. Talking on this thread has helped a lot, im trying to exercise more to keep the mind sane.Still waiting for miracles to happen. Always looking forward to your replys Mr Lifesover. Cant help but love the name
Well seeing as everyone thinks they are a doctor but know fuck all. I'll happily take on the title as doctor lifesover. Thank you for the vote of confidence and 6 figure paycheck, now where's my money? will that be cash or card? Yep I hear ya man, in my case sex is a long forgotten past time it's that bad.. so bad infact, the only pussy I've regularly kissed in the last 2 years is my cat ..so go figure. Sex and sex energy is a massive part of life, abstainance and refraining from sex on purpose must be an absolute bitch. It's hard enough not being able to partake in sex involunteerly, let alone doing it willingly. No wonder the nuns have sand in their vag and and attitude, no one's gone down on them since the end of the 20th century, I'd be frustrated and shitty too. Yes you just well may have an alien in you but that's just a risk you'll have to take I'm afraid. I think 1 person in 3 city's is an over statement to be honest.. I wouldn't be suprised if there's only thousands of us world wide with these particular symptoms hence why we are in the too hard basket (or in our case not hard enough.. see what I did there with the dick joke?). But it's trumatic none the less. Honestly mate talking to you helps me so the situation is reciprocating in nature (wow big word!) I was crazy before all this happened so all I can say is it's made me more saner. Does that make sense? Of course not, but does this world? Not at all if I've learned anything. Talk soon mate
Love the reply haha! I agree sex & sex energy is a huge part of life thats why it nails us so hard. I guess it makes sense haha. Always here to chat mate!
lol I'm glad you enjoyed the read. but seriously, a life without sex (by choice) is no life I won't to be a part of, nor you by the sounds of it. Definitely man, anything else you wanna talk about in future, fire away. In your own time of course, if you can't be fucked talking till' next week, next month and just stop by every so often. by all means, that's fine by me man.
Cant live without it! The symptoms occur.. then the stress follows..then the drive is gone, and it aint the stress causing it, its the symptoms. Such a mind fuck. Still trying to wrap my head around it all. My sex drive was overboard crazy before all of this. Keep chatting man.. its a good laugh anyway ha.
Very well then, I shall continue. My response is quick this time seeing as I just so happened to be checking emails for orders I placed on eBay today (I'm on the computer a lot these days. Ever since my body shut down in a sense, I seem to spend most of my time doing things on the computer (Music editing mainly) I've always been tech minded but since all this, it's all I can do. Before this I was buzzing around like a blue ass fly (you'd only get that slang if you were a New Zealander or Australian, for which I am both 50/50 mix actually) in-fact I couldn't sit down for 5 mins now I cant stand for 5 mins the hell happened? Anyway back to you mate, I'm not surprised, Your libido will take a beating when all you want to be doing is beating off, am I right? I suspect what is happening to us will also be interfering with our hormones and feelings anyway. Yes I'm sure women feel their pussy is a big part of who they are but I'm only a man as you are, and i can only speak for men and our cock is like a soldier with their rifle. I am my cock, my cock is me, without me, my cock is nothing, without my cock, I am nothing. Did I just steal that idea from the movie full metal jacket and replace the word rifle with cock? yes I did. But you get the idea right?! Yes of course you do. Quintessentially its and extension of us.. both literally and figuratively. When our meat and two vege isn't up to operating standards or stuck at "half-cocked" we don't feel alpha male!!!!! Not that I ever yerned to be the toughest manliest motherfucker or anything ( i quite like my feminine side at the best of times, i like crying in movies but shh don't tell anyone) but you get what i mean right it's like its an important part of who we are as men and it can cause a world of hurt for us emotionally as well as physically should shit turn sour. And sadly in our case were kind of left out in the sun to burn with our medical anomaly. I know I keep harping on and going around in circles with my chat sometimes but collectively will we ever find a solution? I'm unsure, I do hope so, I know for one if I ever find a remedy I'm going to jump back on this motherfucking soap box and shout out a solution to you guys. That much is true. It would be my duty to do so as this is a horrible affliction. Seriously mate. Herpes looks like a more tolerable disease to deal with then this shit... that's how mysterious this is to us. OH while I remember look into anything fungal related in regards to your situation too, it wouldn't hurt. Candida and the likes can mess shit up and yes males get it. Very unlikely but hey. Do another thing to if you want go get a blood test (A comprehensive one get your GP to tick everything) then have a look at the results and do a bit of googling or how I was mentioning about a natropath take it to them and see what they can make of it perhaps?). Anyway I'll leave it there tonight time to wrap up and go to bed. If you want to discuss anyhting else more then welcome buddy. Hear from you then shealth. Cheers.
You are totally right man! Trying to kick into living again normally and see how that helps. I was thinking of checking out my DHT & AR hormones.. I see i have some similar symptoms to that of men who have taken finisteride and done jelquing i have never done any of them.. so fucking weird. Like you say this is mysterious shit. Another visit to the GP should do.. i dont know why the urologists dont just tick all the damn hormones like maybe the same ones the endocrin would do? one urologist just checks my testicles and nothing else the other did a doppler which i wanted in the first place so i just keep having to go back. Apparently everything is normal.. drives me nuts. Ill keep you updated.
Yeah I've read the PE forums off and on over the last couple of years, don't ask me why you'd jepordize the health of your dick just to gain another inch. Work with what you've got I say. Haven't got a big dick? Learn to get good with your tongue and fingers to counter act it so she doesn't complain, it's a simple solution.. people don't seem to understand the gentails strengthen grow and and become healthier with regular sex. Mate I'm white as the baking powder in your cupboard but even my dick looked like a gigantic monster from the blue lagoon in my prime days off sex and my ex's vagina was as streamlined and high performing as a formula one race car. No shit. all you need is healthy sex. I know it sounds to simple to be true right? Well it is. Now I've sent you a personal message with my email details for contact let me know if you don't see it Shealth.
.. i know this is an old post but if it is still active I would like to discuss.... basically your sypmtoms are identical to mine which started out of the blue nine months ago... eight doctors and four urologists later I was given some advice that seems to be working albiet slowly.... yoga, ti chi, core exercises and meditation. .... most valuable was reading the book "a headache in the pelvis"... I am forty years old in a loving marriage with two children but at many points in the beginning I was prepared to end it all.... I am through the dark night of the soul moments now and hope is on the horizon with the baby steps of improvement I am making week by week..... please contact me should you want to discuss this!
Hi there, yes I still monitor this thread Happy to talk if you'll care to share about your experience. How about you give me a PM? and we can chat in private or exchange emails via the Private Messaging system, hear from you then
I will post on here for now but may take to direct at some point.... I hope others may see this and also be helped. Exact same symptoms that you outlined at the top of the post including hour glass appearance, down to a tee.... i visited docs several times all said it looks normal and consulted doctor google more times than I care to count and got so depressed and anxious to the point of violent shakes and alot of crying.... even in front of my wife and mother which I never do.
Thought my days of sex were over and couldn't fathom how it had happened so fast.... before this I was a regular john with a very good sex life with a woman I have been with since my teens.
Ct scans done. Sti tests done and put on three different antibiotics for two months. At one point the docs thought I had passed a kidney stone. Sent to hospital twice by my gp.
I also visted accident and emergenct at four in the morning as my pelvic pain became so bad I thought I must have fractured it somehow.
Two and a half months after it began I saw a penile specialist in the urology clinic. Figured if anybody could find something it would be him.... he even specialises in reconstruction and implants! Prior to going I took the unusual step of emailing him with a long detail of everything I was suffering along with the time line of symptoms amd other docs opinions. I had up to that point now been told by a different urologist that I had chronic prostatitis.
I had a thorough examination and was with him for nearly 40 mins which for a standard NHS appt is definately going beyond the call of duty.
He proceded to tell me without giving any labelled definition that he has seen this before and that how well I get will depend on me and how I deal with it. I was puzzled to say the least. He asked if I was a worrier. Yes I am. He was now very frank and said he is contacted by men who have this saying they are about to jump off a bridge (no shit ,I thought), and others who just go "oh", and get on with things.
Now came the advice with no explaining. You need to do core exercises.
You need to do yoga.
You need to do ti chi.
You need to do meditation.... and also have sex three times a week.....
I had abstained through no choice of my own for two and a half months. I asked "even if it hurts?". "Yes".
He said I will see you in six months time.
That was that. Two weeks later the letter he sent to my local doctor stated physical exam was fine but that I had a hypertonic pelvis and that things should resolve in time.
Basically in the medical world these symptoms in men are under the umbrella of non bacterial chronic prostatitis/ chronic pelvic pain syndrome. In women it is usually interstitial cystitis. What we actually have is a pelvic floor that has gone into spasm and has become super tight causing blood flow to be restricted to the said area of particular importance..... the penis. Hence the discolouring. The cold tip. The hour glass which is caused by a vein being trapped or not having enough circulation. The pain is a result of damage to the pelvic floor muscles which have being injured and had reduced blood flow as you floor contracts to gaurd you body in the natural "fight flight or freeze" response.
You may have been tensing your pelvic floor too much for your entire life without knowing it.... probably subconsciously. I suspect like me you are a worrier. Suffer to some degree from anxiety and are probably prone to catastrophic thinking... fearing the worst and trying to prepare for it..... all likely to lead to a tense pelvic floor. Eventually a straw breaks the camels back. This may be physical trauma or mental trauma and everything collapses. The pelvis spasms to such a degree that it hurts. Hurts like hell. It sends deferred pain around the area and because the pelvic floor never truly rests and is connected to most of the body eg legs, abdomen, back and obviously your penis, the effects spread through surrounding muscles, tendons, ligaments, nerves, and nervous system, and your veins. In short you have to now try and let your body reset and repair. Reboot the computer.
The body is an amazing thing and does not want pain. It is also good at recovering but you need to help it with love and care, patience and time.
First step. Calm down your nervous system. It has been thrown out of whack with all thay has happened to it. In short chill out. Easier said than done if like me you have worried and stressed your entire life and see it as the default position. I am attempting this through transcendental meditation which is very good. I now know why it was prescribed to me.... also avoid over stimulation of nervous system with stress or anxiety but also too much caffine or alot of alcohol. I drink everyday as it helps but not to excess. Also recreational drugs is a big no. Get out and exercise but nothing too strenuous. Walking is good.
Step two. Stretch. Several times a day if possible. Plenty of videos on youtube for stretches and breathing for pelvic pain or chronic pelvic pain syndrome. Check out uptown mike.... this will help return your damaged shortened muscles etc to repair.... now I know why yoga was prescribed.... hot baths also help warming the musclesamd improving circulation prior to stretches etc.
Step three. Core exercises but no kegels and no sit ups. Kegels tighten the pelvis but yours is tight enough! Instead do planks and side planks. Back exercises etc. This will strengthen the damaged muscles and crucially get them oxygenated. I also find sitting on a tennis ball helps massively. Again plenty of youtube videos showing how this helps the pelvic floor by releasing muscle through trigger points. Strengthening your quads is going to helps to try lots of standing with your knees slightly bent.... this is the fundamental of ti chi..... now I know why that was prescribed. Again, plenty of ti chi videos on youtube.
Step 4. Get back on the horse. There may have been an infection in your prostate at some point. It may also become infected by urine backing up by pelvic reflex and out of sync which results in the dribble. Regular sex will help flush the prostate. Now I ...(you know where this is going) know why regular sex was prescribed. It was painful to begin with...i have also found that regular massaging of the penis has reduced pain as it has got used to touch sensation. I had to use lots of lube to begin with but now the wife can grab and tug it and whatnot without me being in pain. To begin with it felt like she had pins on her hands!
Learn best you can to realise when your pelvic floor is tense and try to relax it many times a day. Same relief your muscles get when you wee.
Take supplements of zinc. Not multivits though. Zinc helps with mood and nervous system and also testosterone which gets reduced by stress and anxiety. Eat well. Get good sleep.
Sorry for vomiting this all out. I have no idea how far gone you are with this or what improvements if any you have seen over the last three years. I would be interested to know and hopefully can help you further.
Personally right now it is nearly five months since my doctors visit when I began to tale the steps outlined above. Five months ago i could only wear silk tracky bottoms and loose pants which still hurt. I can now wear jeans and close fitting pants no problem. I couldnt sit down without the use of a cushion with a hole for the genitals. I can now sit normal for long durations.... sometimes hours. I can have sex without lube. It no longer hurts pulling out my penis for a wee. Colour is returning and I have many moments throughout the day when I forget I have a problem. I am not out of the woods yet and still have a long way to go. It wont be cured within days or weeks but compared to the hell I was suffering I feel a good 70 percent better. It waxes and wanes and sometimes gets me down but I try my best to keep focusing on the progress I have made and not how far I have yet to go.
Please read a headache in the pelvis. It is a more accurate name for the condition and written by a man who suffered for twenty two years before eventually curing himself and many others. You can also get an audio book for free by signing uo to audible via amazon... first book free then cancel after a month!
You have been very brave to get this far and for coping with it for so long and I genuinly hope this can help and reassure you. It is normal and more common than you think! If only the medical world was more savvy to it...... quote from a GP i saw when I suggested it was pelvic pain was that "only women get that"....... god help us. Get to know your body and your mind and most of all start taking it easy! Any questions or comments I will gladly try to answer. I am not a doctor and this is written from my own experience having devoted hours of research in an effort to understand and free myself of this misery and private hell. Peace!
Or should that be War and Peace?! Finally watch ypur posture. Walk sit and stand well. Slouching puts extra pressure on the pelvis and that causes pain resulting in gaurding reaction causing tensing and further pain and then anxiety which increases the gaurding which increases the pain and so on. It is a vicious cycle which needs to break in order to repair. The meditation works too by allow your body to relax fully and when in that state your body begins to naturally repair anomolies in it. Returning too quickly to stressful situations undoes the relaxing the repairing cycle....
Final final.... if like me after a few drinks and out having a good time with mates (happens rare being a dad to young kids) you realise it looks normal and feels normal downstairs...... proof that it is nerves and muscle tension...... seems straight forward but is going to be difficult but very possible to fix given you provide your body with the right conditions. Try not to worry as this helps like a hole in the head..... and on a last note I have not masturbated like I used to since it happened. Maybe two times. But I know there is no fundamental problem as sex with the wife is no problem. I admit it feels a little different still but each time I do it it feels a little bit more like it used to. The drive is certainly less than it used to be but better as i go along..... stress and anxiety is the major factor cause here for sure.
Hi CCPS, all very great information and gratefully appreciate the long in-depth comment you left and a lot of what you suggest I've been practicing as of recently. Sadly, our shared symptoms are but only a few of mine in the broader spectrum of things. As disclosed in this long thread, I suffer also a lot of neurological symptoms that began back in 2015 (well abnormalities have been occurring the last 15 years of my life if I am being honest) that started with what can only be described as an optic neuritis eye nerve attack and many symptoms since, that which coincide with Parkinson's disease and Multiple sclerosis for example. This too, still ties in with nerve, skin and pelvic issues in my case, and after years of not being taken seriously, the doctors have finally taken heed and spotted some abnormalities and are now monitoring me for suspected MS/ Parkinson (Parkinson runs in my family so I'm not surprised if that should be the case, especially as Parkinson and MS etc are all int the "polio" family of diseases.. even though western medicine won't admit they are under the same umbrella or all branch from the same tree) So it looks like sadly for me, unlike the rest here, my genital issues are but only the tip (mind the pun) of the ice-burg. It's not a quick fix in my case, but more of my body breaking down and malfunctioning and me doing what I can with in reason or riding it out in hope some miracle happens where my body fights back at the neurological degeneration currently taking effect. Again though, I really appreciate your input. Thanks heaps
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Happy to talk if you'll care to share about your experience. How about you give me a PM? and we can chat in private or exchange emails via the Private Messaging system, hear from you then 
Irritating Pain / Over-Sensitivity
A rare male sufferer
Pelvic pain, leg pain, some difficulty urinating, some intermenstrual bleeding, not pregnant and no STI 
