Extremely bizzare penis/genital pain and problems countless symptoms no answers!!!

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 .

30 Replies

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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.

  • 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.

    All the best!

  • 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.

  • Private message me I would like to ask you a question. Thank you Deb

  • i recall many years ago giving my boyfriend an alergic reaction on his penis.

    i was a florist and we'd had a quickie in my lunch break.

    obviously i had sap on my hands from flowers.

    you could have had that kind of reaction from anything on your hands or partners.

    sometimes it could be a change of soap powder.

    that could be the explanation of how your skin looks and as for your other symptoms,maybe thats to do with your body's tension.

    ask your dr if a dermatologist could have the answer.

  • 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.

  • CronicPain1 have you found your symptoms have eleviated over the 4 years you have been suffering or stayed somewhat the same?

  • 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

  • How'd it go with the neurologist? Also, you said gabapentin was unsuccessful. What dosage were you on and for how long did you take it?

  • 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.

    Keep us updated.

    Send me a message if you need any more advice.

  • Thanks for the advice I've sent you a message to get a bit more info in what you went through.

  • The sandpaper glans thing is the WORST!!! It really upsets me a lot.

  • 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.

  • Wow 14 years sounds horrific! Thank you and I will check that out definitely. Best of luck to you in your recovery also.

  • 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?

  • Any updates from anyone?

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