Constant Penile Pain for 8 months, pl... - Pelvic Pain Suppo...

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Constant Penile Pain for 8 months, please help!

Redraws17 profile image
261 Replies

Hi everyone,

This all started for me back in February '15. Im a 24 year old male btw. I woke up one day with burning and extreme tenderness in my penis, quickly followed by burning upon urination and a penile discharge. I had what the Drs diagnosed as a prostate infection, as every other other test for std, uti, etc came back negative. All was well when I took Cipro and the next morning I awoke totally symptom free. 4 days later I had been sitting a while (I was on a long flight) and I awoke to the pain back right where it was in my penis. Not sure if this has anything to do with it but the day prior I had sex as my Dr told me frequent ejaculation would help the prostatitis, so I figured why not. I just assumed that the infection had returned but there was no more burning on urination, or discharge.

I've been tested for everything time and time again. Everything is negative. I have done blood tests, everything is normal.

Since I've been "diagnosed" with chronic Prostatitis/CPPS. Every urologist I've seen says my prostate feels pretty normal so they doubt it's the prostate causing my issues. I've had MRIs of the pelvis and lumbar spine only to come back normal.

I bought into the theory that perhaps the infection could have caused CPPS, but I've been doing physical therapy (trigger point release, pelvic floor stretches) with a pelvic floor therapist for 2 months now with very little relief. My muscles were really tight to begin with, but I think this is more of a product of the problem rather than the problem itself.

The pain hasn't abated at all since it returned back in February. I would describe my penis pain as burning/stinging/tingling. It is also hypersensitive to the touch. If it rubs against my underwear the pain is unbearable. I had to switch from boxers to briefs because of this. I have some urinary hesitancy as well. But these are pretty much my only symptoms.

I have noticed though that my urethra appears to be inflamed though, perhaps enlarged for whatever reason. If I have some leftover semen after ejaculation it sometimes dries over at the top and crusts over.

The closest thing I can find to my symptoms is Pudendal neuralgia. My theory is that the infection developed some scar tissue which might be trapping my dorsal nerve somewhere along its pathway (perhaps also causing the urethral inflammation?). I just pray that no permanent nerve damage has occurred.

Just looking for any advice or even better someone with a similar experience that can offer anything--any help is appreciated. Thanks everyone.

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261 Replies
frodofish profile image
frodofish

Sorry I am no expert in male issues, but it sounds unlikely that you would entrap a nerve so quickly from a one off infection ? There is a man called David Mcoid, he has a FB site Freedom From Pelvic Pain, I know he has used Restorative Excercise on himself, and helped lots of other men, If you get no other suggestions via this forum, as I noticed posting is a bit hit and miss whether you happen to catch anyone in the no, there is also a UK pudendal neuraligia , can't remember the exact name, but it was not the same as the US site. From what I recall it had "bladder issue people on " I was diagnosed with nerve entrapment via Nantes team, but had no infection prior to that, just a physio irritating nerves and charging me money to do so.

airplane profile image
airplane in reply to frodofish

I agree that this is a nerve entrapment of some kind. Have you had the basic exray of your spine. Sometimes if there is a vertebra out of place or a severe herniation this can cause a pinched nerve that is called referred pain. L3, 4 and 5 can possibly be the culprit. Worth checking into if you haven’t already done so. I wish you all the best. N

Konagirl60 profile image
Konagirl60 in reply to frodofish

Have you had your nerve released? Was it the rectal branch of your pudendal nerve? Was it being pinched by ligaments?

Redraws17 profile image
Redraws17

Thanks so much for your reply. I didn't mention that I had the infection for 14 days before it was properly treated. It was mistreated as an std in the beginning. So I think it's possible for scar tissue to develop, but of course I'm just speculating. When I was given the correct antibiotics the pain went from on to totally off. And likewise when it returned, from totally off right back to on as if someone flipped a switch.

I will look into freedom from pelvic pain, but I'm not sure this would help me as i had no problems prior to this seemingly ordinary infection. Perhaps this would have happened to me eventually, the infection just kicked it off.

Konagirl60 profile image
Konagirl60 in reply to Redraws17

Hello and I feel your frustration. Is it possible that you have a urethritis? Is any stool leaking out? If stool gets in your urethra it can cause an infection.

The rectal branch of my right pudendal nerve was pinched and eventually stool started leaking out. I acquired a bladder infection from stool leaking out while I slept, it entered my urethra and infected it and my bladder. Cipro cleared it up for good. I had to take my pills for a week. How long were you on Cipro?

Do you have any tingling, burning, electrocution type sensations? Do you have any loss of feeling?

I send you best wishes to find answers stat! Chronic pain is exhausting.

ainaemmily profile image
ainaemmily in reply to Redraws17

Hello,

My friend was diagnosed with CPPS with aevere pelvic pain. But fortunately, he found a herbal diuretic and anti-inflammatory pill can relieve his pain. During that time period, the most obvious symptom was that the pain relieved a lot. So he continued to take the fourth, the fifth and the sixth courses. And eventually, he was cured. He said massage was also helpful to him. Everyone's physical condition is different. Consult with different doctors for advice. Hope this can help you.

Pepper1977 profile image
Pepper1977

Look up the closed pudendal hope neuralgia Facebook group, the are men on there

rocco76 profile image
rocco76

Redraws - very similar to the trouble I had and have had no real luck in getting rid of either , be interested to know how U get on , think mine is nerve related and got sick of my gp looking at me like I was a lunatic so haven't been back in a year, just miserable n suffering .

Sarah33 profile image
Sarah33

Sound like an infection and also PN, but I'm not a doctor. I use xylocaine ointment 5% 35g tube every hour or two for pn pain. It isn't ideal and is expensive but it is the only way I can have any life. Had decompression surgery years ago, no change in pain. Trying pain clinics and occasionally systemic meds but have tried them all.

Don't use Emla, as it needs to be wiped off. I have to wear pad liners to catch the moisture from ointment but at least I'm not it total agony all the time. Good luck!

in reply to Sarah33

Hi, why not go to a special treatment clinic, don't be embarrassed. You will be screened very thoroughy and see a doctor who can refer you if the pain is also neurological. Go for it.

Redraws17 profile image
Redraws17 in reply to

I have already. Have seen a neurologist, but they're pretty much guessing with the pudendal neuralgia diagnosis. I have a nerve block in 6 weeks which will be diagnostic, and hopefully therapeutic--although it's very unlikely from what I've read.

gjax21 profile image
gjax21 in reply to Redraws17

Where are you getting the nerve block?

Redraws17 profile image
Redraws17 in reply to gjax21

At URMC with a Dr Westesson in Rochester NY.

ChronicPain1 profile image
ChronicPain1 in reply to Redraws17

How did the pudendal nerve block go?  Are you feeling better?

gjax21 profile image
gjax21 in reply to gjax21

Nerve blocks don't seem to help most people, and only last a short time if they do

Konagirl60 profile image
Konagirl60 in reply to gjax21

A nerve block is actually a diagnostic method and is not meant to last.

I had a nerve block done correctly in Minnesota. Back home, they did not listen to me and kept injecting in the wrong place. ( a physiotherapist said my nerve was pinched in the Alcock’s canal when it was pinched in my rectum.

My Pain specialist never listened to me. I never filled out Pain Cinic Intake forms. She did a nerve block into the wall of my vagina ( block failed ) and the she did another one into the lip of my labia. ( no relief whatsoever.....another failed block ). Her nerve block was a local injection of an anaesthetic. That will not work to diagnose P.N.E. She needed to use a steroid and inject the ligaments near the nerve root. As a result of these incorrectly done nerve blocks, I misdiagnosed with vulvodynia. It was always in my rectum and referring pain elsewhere! That Pain specialist is incompetent! She is also a cool liar.

In Minnesota, I was injected with fluoroscopy guidance into the nerve root in my right buttock with an anesthetic AND 80mg methylprednisone and I sat! I sat for several hours! I lost some urine but it calmed down and never happened again. This nerve block proved it was my pudendal nerve in trouble and it was the rear branch.

The doctors back home did not belive the American and they neglected me. My pain specialist did NOT follow through with my American specialist’s treatment advice and she dropped me as a patient. I had every right to advocate for myself and they dismissed all of my efforts.

Do no harm? She should have organized for three more sequential one month apart CT or fluoroscopy guided nerve blocks into my buttock. Apparently, there are cases where the blocks shock the nerve(s) back into functioning but they are rare. I needed stat decompression surgery.

They left me to deteriorate and die slowly in agony. I developed serotonin syndrome from useless medications, I acquired metabolic syndrome as my lymphatic system became black as tar from useless and toxic prescription medications and finally I developed an organic brain disease and I lost cognitive function. I have paid a local Naturopath over $15,000.00 to be detoxified, for supplements and for Myers cocktail infusions to help heal my nerve(s).

Divine Intervention saved my life in 2010. I prayed as I could feel myself dying. I met a nurse consultant three days later in a health food store. I hired her four months later and she procured my surgery. Not one of the eight specialists I saw here did what they said they would do......send me to America for life sparing surgery! They misrepresented the entire case! They are frauds.

My 17 year old immature and depressed son and I had a forced separation because I had to save my life! No one would help me......not even my family! They did not believe me either! It has been brutal. I was left in life threatening pain for three years.....no proper pain control was offered to me. My son and I have P.T.S.D.

I honestly do not know how I survived except that I love life and I had no pain when I stood. I stood all day for one and half years on orthopaedic shoes waiting for my surgery. No doctor would help me get it. They were convinced I was committing fraud and this was a personality disorder!!! I was 51, educated with a degree and two diplomas, I was a medical worker in the best and busiest teaching hospital where I live.

Personally, I feel like I have escaped a torture camp. That doctors could treat a women so badly is disgusting. Good luck. I hope you find a reputable and sincere doctor.

bettyfl profile image
bettyfl in reply to Sarah33

Hi, I know it's been awhile for this post but I would love to know where you put the cream or ointment xylocain. I have 5mg Lidocaine patches and sometimes put them across my rectal area and left side pelvic muscle, levator ani and another. I have PN and other nerve issues and muscle spasms in pelvic floor. Thank you.

Konagirl60 profile image
Konagirl60 in reply to bettyfl

Have you tried capsicum patches yet? They work!

Sarah33 profile image
Sarah33

*Sounds

Sarah33 profile image
Sarah33 in reply to Sarah33

Argh, phone not letting me edit. To clarify, I use about 2 grams of xylocaine ointment each time, not whole tube

Hi, I've had a similar but definitely not an identical problem to what you describe for what's now been over 5 1/2 years. You can read my story in this post: healthunlocked.com/pelvicpa...

A few things to consider:

Have you ever ridden a bicycle for long periods or do you spend a lot of time sitting? This can obviously put pressure on the urogenital nerves that run through your underside, through the pubic arch.

Have you tried an 'alpha-blocker' for non-bacterial prostate problems? One such medication is Tamsulosin.

Have you tried 'Cialis'? This is an impotence drug but it also used for chronic pelvic pain.

Have you ever suffered from constipation or found yourself straining too much when going to the loo? This will put pressure on the nerves down there. Also if you've ever played sports or lift weights and had a 'groin' injury.

Of course these are just a few ideas, as there are so many things that can cause the symptoms you're having. I think Urologists diagnose a prostate problem rather (too) frequently. Also there are many other things besides the pudendal nerve issues that can cause these pains.

If you really have a prostate problem there are some herbs that can help, which you can find via Google. Some people recommend taking vitamins and minerals such as B-complex and magnesium.

Are your symptoms always some kind of pain/irritation or do you ever get numbness or other worrying change in sensation like pins-and-needles?

You mentioned you can have sex, is this painful or do you get any changes in sensation on erection?

It's a miserable condition to live with. Keep persevering with trying to find a solution, but don't go into each appointment with too much hope that they'll come up with anything, as it will set you back if they don't.

All the best.

Redraws17 profile image
Redraws17

Thanks pepper1977.

And yea Rocco this is pretty brutal. I will definitely keep you updated of anything works for me.

Sarah33- thanks for your response, and sorry for you troubles. I thought an infection for a while too but I've been tested of everything time and time again and all negative. I even went so far as to having antibiotic injections into my prostate in case that was the issue. It didn't help at all unfortunately, so at this point I'm ruling out infection. As for the ointment, I'm not sure I want to put it on my penis, I think id rather live with the pain than have a numb penis always.

Socirul- so sorry you are dealing with this as well.

I actually rode a bicycle a few months later and then quickly developed a broader pelvic pain, along with some leg pain. Quit doing that immediately.

I also have been sitting a ton for my line of work, and definitely tensing my pelvic floor repeatedly as its a high dress environment. I thought this might be the problem, but the only thing that triggered this was an infection, so I think something else is going on.

Have tried cailis as I heard it might help the pain because of increased bloodflow, but no didn't help the pain. Also tried flomax, no help.

No problems going to the bathroom. I slight urinary hesitantcy that's all.

Have tried a bunch of herbs intended for the prostate for months, didn't help penis pain at all. pumpkin seeds, nettle leaves, quercetin with bromelein, turmeric, you name it.

Also taking a b complex, magnesium, alpha lipoic acid, and acetyl l carnitine currently for nerve health. Been about 45 days of that.

My sensation always stays about the same. Just a constant burning/stinging and the skin of the penis itself at times can feel kind of raw. At other times just very sensitive that it's uncomfortable. As for sex it's the same, just very sensitive. After a while it can begin to be pretty uncomfortable.

And yea I know, I knew about 2 weeks into having this pain that is likely I'll be dealing with it for a long time. I know it's pretty bleak but can't give up. Good luck to you as well. We need it 😊

gjax21 profile image
gjax21 in reply to Redraws17

Your symptoms of broader pelvic pain upon bike riding are critical. Please relate anything and all things that have had POSITIVE OR NEGATIVE EFFECTS.

Please describe in detail the pain in your penis by regain and where it is worst. What is the most painful part, glans?, coronoa?, frenulum?, circumcision scar?

Please look at the following publication with dermatomes for the dorsal and perineal nerves. Tell me if the pain follows any of these patterns.

sciencedirect.com/science/a...

Do not think that this is because of the infection just because it coincided with the onset. Anything can set off pelvic floor dysfunction from a bad sexual experiences to a prostate infection. The process takes over and is self supporting after the initial insult.

If you touch the tip of your penis in different locations, notice if your pelvic floor tenses up. This response is common in many men and can be anything from the bulbocavernous reflex to a hypersensitized response from too much masturbation.

I suspect that that the pain in your penis is causing the muscles to tense up and further entrapping the nerve.

DO NOT- TAKE ANY MORE HERBS! EXPOSURE TO AN HERBAL 5 ALPHA REDUCTASE INHIBITOR COULD MAKE THIS 10X WORSE. We don't understand the mechanism yet, but I suspect that the androgen sensitive calcium channels in the pelvic floor get permanently altered if DHT drops too low for an extended period of time.

1. Try and get an appointment with DARIUS PADUCH AT WEILL CORNELL FIRST

2. Do a free phone consult with IRWIN GOLDSTEIN and see what he says. Tell him KEVIN sent you and thinks you might be an interesting case for...

BOTOX INTO THE PELVIC FLOOR.

Once you have seen PADUCH and found out what he says....then maybe do the procedure. I think he also does botox. I thought I developed the procedure with Goldstein, but apparently he does it as well.

Redraws17 profile image
Redraws17 in reply to gjax21

First of all, thank you so much for your detailed response.

There is nothing that makes it much worse, except for marijuana which makes it burn like 10x as bad. Not aggravated by sex, foods, alcohol, etc.

However, I did ride a bike about 3 months into having this problem, and it caused an aching/burning right leg that has persisted since. This made the penis pain a little worse Id say, and has been like this for the last 5 months. I stopped riding the bike immediately.

The penis pain is from the circumcision scar up to the very tip. That is where the hypersensitivity begins. When I have no clothes on I feel a minor burning there, but when I put on underwear it begins to burn pretty intensely.

I looked at the publication abstract but didn't see anything on dermatones--I assume this is in the full publication, but it was $34.99 to purchase. Any way to view this for free?

I'm not taking any more herbs, just some supplements for nerve health. b complex, alpha lipoic acid, acetyl l carnitine, magnesium.. Are these ok?

I just googled Paduch and nothing seemed to show up about botox injections. Would this be the primary goal of seeing him? Because I've seen 2 urologists prior to this, and also a neurologist.

I will email Dr Goldstein to set up a phone consult.

Thanks again for you help 😊

gjax21 profile image
gjax21 in reply to Redraws17

The effect of Cannabis is quite weird and interesting, I will have to look into it. You should too and mention it to Goldstein.

Where is the ache/burn in your right leg? Please look a somatosensory dermatome image and see if your pain follows any of the groups.

google.com/search?q=sensory...

Darius Paduch told me he did botox, but I can give you the contact info for his office nurse if you want to ask.

Just call San Diego Sexual Medicine for Goldstein. Don't email him.

I just think Paduch is pretty smart after meeting him.

I can see the publication for free. Please look again on the left side. Send me your email and I can send it to you if you can't see it. Just look for the images of a penis showing which nerves feed what parts.

I would actually cut all with the possible exception of the bladder. High B vits actually might have irritated my nerves in the bladder.

The pain is on the surface of the skin, correct?

Redraws17 profile image
Redraws17 in reply to gjax21

Yep surface of the skin on the penis.

The pain in the right leg is mostly L1-3, with some 4.

Redraws17 profile image
Redraws17 in reply to gjax21

After having a look at the innervation of the penis by the DNP and perineal nerve, I can almost certainly take from this that its both nerves at play here. My sensation even on the part of my penis that is SOLELY innervated by the perineal nerve is still hypersensitive to touch. This is somewhat decent news id say, as the problem is likely located closer to the pudendal nerve, rather than just solely to the distal DNP.

Is there anything else you can take from this?

Konagirl60 profile image
Konagirl60 in reply to Redraws17

Be very careful with Botox. My US doctor said it harms muscle tissue close to the injection site. I do know though, we do what we have to to get some relief.

Subarusvx1000 profile image
Subarusvx1000 in reply to Redraws17

Did you ever get better?

Hi, why not get a referral to a uro-neurologist who I think may be able to investigate your problem further. Look on the inter-net, google uro-neurologists uk and choose one nearest your home. Ask your GP to refer you.

Redraws17 profile image
Redraws17 in reply to

Thanks for the advice, but I live in the US. I don't think there are many uro neurologists around, but I will search one out.

Good Luck. Let us know how you get on.

gjax21 profile image
gjax21

Also

1. Start wearing a butt plug or use an inflatable one to streach and wear it as long as possible. See what effect it has. I can give you recommendations.

2. Start walking as much as possible and stop sitting at all.

3. Find a chair that has no support in the center so there is no pressure on your perineum.

4. Use a hemorrhoid pillow

gjax21 profile image
gjax21

Try this butt plug.

Start very slow, easy and careful!

It is good for stretching because it inflates a lot at the bottom and the narrow part is short, leading to more downward stretch of the pelvic floor, which is what you want.

gjax21 profile image
gjax21 in reply to gjax21

amazon.com/gp/product/B001F...

wbeaman profile image
wbeaman

Hi All,

Similar situation here. I attribute it to oral sex being performed on me as the symptoms started days after this encounter. All the Drs I've seen disagree as they can't find any signs of infection. I've never had any problems in this area until now. Here are the details:

Symptoms:

-Biggest symptom is pain at the tip of my penis

-Penis is sensitive to friction but is constantly tender/tingling/irritated

-Urethral meatus appears slightly inflamed at times

-Perennial area is also very tender/sore (although not debilitating like the pain at the tip)

-Urination is generally fine, although there is some dribble at the end and I have to wipe myself afterwards

-Ejaculation results in tenderness in the pelvic area and redness at the tip (but also provides some relief at the time)

Treatment to Date

-Urologist #1 - thought it was irritation, possible yeast. Perscribe a steriod/antifungal cream. No improvement. Then perscribed an Alphablock which also did nothing.

-Urologist #2 - saw Dr. Nickel in Kingston, ON. Diagnosed me with CPPS after an examination and perscribed Elavil and another Alphablock. No improvement. Based on my research, this CPPS diagnosis seems to be a bucket that uros toss undiagnosible pain into

-Toronto Prostatitis Centre - this is a private clinic who combined Antibiotic Therapy and Prostate Massage. Also ordered a TRUS which came back normal. I have had weekly treatments for the last 3 months but no real improvements. We are trying a course of anti-fungals and then he will be out things to throw at it.

-Urologist #3 - told me it was in my head, suggested a Psychiatrist with experience in "Pain" and ordered a precautionary MRI. Annoying, but on the off-chance this is something chemical going on in my brain, I am going to explore this route to cross it off the list even though I highly doubt this is the cause (I've lived a blessed life, no emotional traumas, no history of mental illness).

I recently tried a product called "Candaclear4 by Genestra" and I did notice an improvement after a few days, but the symptoms crept back. I am about halfway through this treatment so I will let you know.

I am a regular user of Cannabis (have been for since age 21, I am now 30). I do not drink or smoke cigarettes. I don't notice any difference when I smoke Cannabis. I did try stopping for a few months but there was no improvement. I've had joint and muscle pain for 2-3 years prior to the onset of urethral symptoms. Not sure if this is related or I just have bad luck. The pain is so bad at times that I have contemplated suicide. Its stressful to think I could be in this level of discomfort for the rest of my life. Obviously I would like to avoid that solution, so any feedback would be much appreciated. Anyone else in Toronto? Is there anyway to organize this so we have one collective voice rather than thousands of unresolved forum topics across many sites?

wbeaman profile image
wbeaman in reply to wbeaman

Anyone have any updates?!

Redraws17 profile image
Redraws17 in reply to wbeaman

Hey sorry, I've been away for a month and just checked in. Situation is still about the same, but I did get an improvement with a much higher dose of Lyrica (600mg daily).

I also just had a nerve block so we ll see what happens.

Your symptoms sound almost identical to mine so very good chance that whatever helps me helps you and vice versa.

wbeaman profile image
wbeaman in reply to Redraws17

any updates redraw? I started Gabapentin and have noticed a mild improvement. Also starting with a Pelvic physio early in the new year. Will update if that helps at all.

Pafen profile image
Pafen in reply to Redraws17

How are the side effects with the lyrica? My pain specialist gave me the option to increase all the way to 600mg daily if I want.

Redraws17 profile image
Redraws17 in reply to Pafen

Nothing much I've noticed other than orgasm takes much longer to achieve.

The 600mgs daily only takes about 30% of my pain away which is not awesome, but any improvement is good I guess

Konagirl60 profile image
Konagirl60 in reply to Redraws17

Read about Lyrica and the problems it causes. It is one scary medication. I went deranged when I was prescribed this medication for a supposed post herpetic neuralgia. It was scary and I also gained 15 pounds in two months. I stopped cold turkey.

ChronicPain1 profile image
ChronicPain1 in reply to wbeaman

I also had muscle and joint pain for a few years prior to the onset of the penis pain.  My chief complaint is the burning and stinging of the penis right at and a little below the circumcision line.   Underwear rubbing against it is really painful.  Did you have any luck with Candaclear4?  Have you found anything else that has helped you? 

Konagirl60 profile image
Konagirl60 in reply to wbeaman

Your story sounds like my own. Doctor after doctor with no answers. What the heck did they learn about nerves in medical school! Makes me wonder?

Are you taking a good nerve pain modulator like Amytriptyline or Nortriptyline? The stress of this level of pain on your body will raise your cortisol levels, sugar levels, blood pressure and affect hormones to. Your system needs calming down with the above and magnesium bisglycanate, Pascoflaire Passion flower tablets, curcumin and perhaps Epsom salt baths.

I am in Canada. The ‘Wasser Pain Clinic’ in the Mount Sinai Hopsital has Pain specialists there that do the nerve blocks and refer for surgery. Can you get an appointment there? Your GP should make this a stat appointment.

The longer you wait for surgery the worse the outcome post op. I was made to wait 3.5 years for surgery and my pain has decreased from 15 /10 life threatening, unable to breath normally, to 7/10 pain that is 60% controlled with Nortriptyline ( I was suicidal to....brutal pain ). hydroxyzine hydrochloride ( anti histamine...Mast cells act up when we have pain ), Zopiclone for sleep, Compound suppositories with Valium and Lidocaine and legal medical CBD oil and THC oil. BTW, I am on long term disability. Had I been taken care of properly, and had surgery right away, I would have healed. The doctors blew it!

I am praying some kind doctor will help you. This injury is not well understood and when a doctor cannot diagnose you they think it IS in your head when it is not! They labeled me with a personality disorder! NOT !! Good luck.

wbeaman profile image
wbeaman

Guys,

Stumbled across this site. Think this is a great way to organize our symptoms and suggested causes in one organized database. Hope the mods allow this!

prostatitis.16mb.com

wbeaman profile image
wbeaman

has everyone solved this issue? Would love to hear what worked!!!

kaysee profile image
kaysee

@Redraws...was going through this thread and the responses + your history, any thoughts on what may have kicked this off? Your pOV? Did it just happen to start one 'not so fine day'? I had been through this and cant claim to completely sorted this off...what tests did you get to take and presume no infection was found? Is it better now than it was months ago?

Did anyone try this? uribiotic.com/

Redraws17 profile image
Redraws17 in reply to kaysee

There was an infection for sure. I had penile discharge, burning in urination, itching. That went away completely after one dose of Cipro. As did my pain. The only thing that came back was the pain, and it has stayed since then for the last 11 months.

Konagirl60 profile image
Konagirl60 in reply to Redraws17

Could it be interstitial cystitis?

kaysee profile image
kaysee

And is it a pain that waxes and wanes..very non specific..more of a discomfort actually? Sort of mimics what I have had..over 2 years now..but has been sporadic..comes in short bursts. Had the same cipro and doxy way back for 2 weeks plus. It is a bit bizarre that it is so difficult to indentify and treat. Most of the drs are a bit clueless on treating abacterial prostatitis. Btw, did any tests show anything positive??

kaysee profile image
kaysee in reply to kaysee

Is your pain sporadic too or is it almost daily?

Redraws17 profile image
Redraws17 in reply to kaysee

It is constant

Konagirl60 profile image
Konagirl60 in reply to Redraws17

Has you had urodynamic testing done of your urinary organs?

Redraws17 profile image
Redraws17 in reply to kaysee

Tests have shown nothing. MRIs totally normal. Every other test normal

Hwood14 profile image
Hwood14

Have you been checked for a UTI?

Redraws17 profile image
Redraws17 in reply to Hwood14

Yes 10 times. negative to everything

wbeaman profile image
wbeaman in reply to Redraws17

do you have hip/back/leg issuse? I have been dealing with the same BS and decided to give pelvic physiotherapy a try because i had some issues with my hip/legs leading up to this (but also got a BJ from a tinder girl which is what I automatically thought was the cause). Its only been 10 days since I started PT but i have noticed a minor difference. I'll update if I see any real results with this approach

Redraws17 profile image
Redraws17 in reply to wbeaman

Yea my leg and hip pain began months after this did. It was just the penile pain to begin with. Have tried 4 months of pelvic physio which didn't help much at all. However, I have been doing a new hamstring stretch lately where I sit down on the floor, make sure my back is well postured with absolutely no hunching over. From there I lean my torso forward to stretch my hamstrings which are abnormally and I mean extrodinarily tight (I can't come within 6 inches of touching my toes). This has seemed to help me a lot the last week since I've started doing that. I will keep you updated.

Redraws17 profile image
Redraws17 in reply to Redraws17

And lol Tinder girls-- coincidentally things started when they were around as well

wbeaman profile image
wbeaman in reply to Redraws17

What do you speculate is the cause in your case?

Redraws17 profile image
Redraws17 in reply to wbeaman

I had an infection. Uti I think but it was untreated for 2 weeks. I was given Cipro which helped immediately. My penile tenderness went away completely. Burning and itching in urethra also gone.

My idiot Dr said that ejaculation would help (without clarifying masturabtion or sex) so I had sex again 3 or 4 days after. Learned since she meant masturnation only, and that imo was a mistake as my body should have rested.

The pain came back 36 hours later and hasn't gone away at all for a year.

So I believe something happened with the infection (which was 100% there, no doubt at all) and the antibiotic maybe. Hard to say.

wbeaman profile image
wbeaman in reply to Redraws17

do you think it was an STD originally? Our symptoms sounds the same, but I have never had any discharge or tested positive for anything. Just pain and irritation. I've seen 5 urologist and all have said it has nothing to do with bacteria or something transmittable but I find that improbable considering the timing. I think its one of the following:

1.) An atypical version of HPV or HSV

2.) Myoplasma or some other bacteria that aren't covered on an STD panel

3.) Something muscular/nerve related?? This is a weird theory to me but most doctors seem to be convinced this is the most probable cause

Redraws17 profile image
Redraws17 in reply to wbeaman

It wasn't an STD. I was treated for clamydia and gonnorhea promptly and that didn't help at all. I was traveling and when I got back home I was given Cipro which worked immediately. Then 4 days later the pain came back, with no other symptoms.

Do you have a urinary hesitancy?

That and the pain are my only symptoms.

I would say in your case that it is probably muscular, if I had to venture a guess.

wbeaman profile image
wbeaman in reply to Redraws17

my urinary issues are very minor. Its mainly constant pain/discomfort at tip of penis unrelated to urination.

oligio profile image
oligio in reply to wbeaman

hey wbeaman, new to this forum. I noticed on your past post that you were put on Gabapentin. Ive actually just started Gabapentin myself & will be trying pelvic physio shortly as well. How's that working for you? Are you still on the Gabapentin? Im starting with 1 capsule/day & seeing how that goes. Not crazy about pain killers but dont have much of a choice at this point.

I've been fighting prostatitis (bacterial) for about 4 months now, its completely ruining my life. I've gone thru about 6-7 different antibiotics o far & nothing has provided any permanent results. If anything my symptoms have got worse over the last 2 weeks, hard to get a good night's sleep. I get (somewhat) regular shooting/stinging into the tip of my penis which makes you feel like you're gonna pee yourself plus constant pressure on my bladder. Ejaculating seems to aggravate my symptoms even more so I'm at the point where Im afraid to even do so anymore. Anyone else have this problem? I'm hoping the pelvic physio will help. Any feedback on that?

wbeaman profile image
wbeaman in reply to oligio

Hi Oligio,

Answers to your question:

1.) I have discontinued Gabapentin because I didn't notice any difference in my symptoms after 6 weeks and it made me dopey

2.) I just started Pelvic PT so hard to pass judgement either way so far. I'll be sure to update after I give it a fair chance (probably 4-6 months from now)

3.) I had a cysto performed. Not nearly as bad as it sounds. Might as well go for it.

You mentioned that you have bacterial, what specific bacteria did you test positive for?

oligio profile image
oligio in reply to wbeaman

Thanks wbeaman. Did the Cysto give you any further insights into what's going on in there? Was it helpful in steering you towards a specific treatment?

In regards to specific bacteria, I don't know, that's the problem. The first 2 doctors I saw when this first started did lots of tests (std, blood, urine, etc.) and everything was negative but put me on cipro anyways. I got some immediate improvements with that but after a while other symptoms started emerging. I go to a private clinic now to get the prostate massages/drainage & the doc can see pus (bacteria) in my prostate fluid but he said its not possible to determine exactly what kind of bacteria it is. Hence the multiple different antibiotics. He says you have to cover all possibilities and hope that one of them does the trick. I did do a semen & urine analysis to see if it was a Candida (yeast) infection but that came back negative. I'm now wondering if it's possible to kill off all bacteria but still have symptoms. (ie. goes from chronic bacterial prostatitis to chronic non-bacterial prostatits). So many questions, so few answers out there.

I actually just booked my first physio session for tomorrow as well. I'm hoping this helps. The shooting/stinging pains at the tip of my penis are becoming unbearable. I'm assuming these are nerve issues that are causing this which I hope they can relieve asap. Doing normal activities are becoming harder & harder. I'll update my progress

wbeaman profile image
wbeaman in reply to oligio

Just a guess - but are you in Toronto seeing Kaploun? If so, what physio are you seeing? The cysto was unremarkable - everything looked normal. Same with the TRUS.

Do you attribute the symptoms to anything specific (ie. muscle issues, sexual encounter ect)?

oligio profile image
oligio in reply to wbeaman

Ya Im see Kaploun. Are you in T.O as well? I'm going to a place called Proactive Pelvic Heath Centre. How about you? First session was interesting, I think there's definitely some muscular (and nerve) issues going on at this point which is why ejaculating is flaring up my symptoms. I can actually feel the muscles spasming like crazy sometimes.

I'm 99.999% sure that the original infection started from sex. I believe (and most of the docs seem to agree) that it started as a UTI which I left untreated for almost a month & ended up spreading into my prostate. The symptoms were very minor for the first month so I thought it was nothing & would go away on it's own (just some twitching in the muscles when I would urinate & also a strange increase in the amount of urine I was producing). Then one day, after about a month, it started becoming extreme & unbearable pain/burning in my penis & I went to see a doctor right away. All the std tests were negative but he found traces of blood in my urine so he put me on Cipro. I felt relief almost instantly and that lasted for about 4-5 days but after about a week, I started noticing more the typical prostatitis symptoms starting to emerge (rectal & testical pain, urinary difficulties, etc.). Went downhill from there & been fighting this ever since....

wbeaman profile image
wbeaman in reply to oligio

check in your messages - just sent you one

Subarusvx1000 profile image
Subarusvx1000 in reply to wbeaman

Are you better?

Wonderer profile image
Wonderer in reply to Redraws17

I have PN and extremely tight hamstrings as well. How are you doing after 2yrs? Thanks!

oligio profile image
oligio

Has anyone ever had a cystoscopy done? Even thou i have prostatits, my doc is suggesting it as a way to see if there's anything else going on in my urethra and/or bladder. The thought of having someone shove a tube with a camera into my penis sounds like a nightmare. Any experiences out there? Is it as painful as it sounds? Ive read about people having it and it didn't even find anything which is making me wonder if there's any point

Redraws17 profile image
Redraws17 in reply to oligio

If you have chronic bacterial prostatitis (proven infection that doesn't go away) you may want to consider intra prostatic antibiotic injections with Dr Toth or Dr Bahn. Google it.

Also you mentioned you've been on numerous antibiotics. What about Fosfomycin? Have a read.

medscape.com/viewarticle/85...

If you haven't been given this yet Id definitely try this before you consider the injections.

Good luck and let me know how you get on.

oligio profile image
oligio

Thanks redraws17. I've heard about the injections. Have you tried them? I've read mixed reviews and that they should only be used as an absolute last resort after all else fails. Ya, I was on Fosfomycin along with Doxy together just last month. I saw a huge improvement after a few days of being on it, I actually thought this was the cure. Then unfortunately after about a week or so I started re-developing symptoms. Weird thing is that they were different from my previous symptoms so not sure what's happening inside me exactly. I'm having more urinary symptoms lately and the stinging pains at the tip of my penis. Prior to that it was a lot of rectal, perineal & testical pains, with minor urinary symptoms. I'm on an antibiotic call Macrobid right now which is primarily for uti's (not really for prostate) but doc thinks it may help regardless. Ill update my progress......

Redraws17 profile image
Redraws17 in reply to oligio

I did try them actually. Didnt work but it seems my problem is not prostate related. I had no side effects though so I'd say it was relatively safe.

deepbew profile image
deepbew

for how long did you take cipro before it went away and then returned? can u please give out the details?

Redraws17 profile image
Redraws17 in reply to deepbew

It was 4 days of ZERO symptoms at all. I went from a pain of 8 or 9 in the penis to a 0 overnight. 4 days later the pain returned almost jsut as bad, probably a 6 or 7 though and that has been constant, and i mean constant ever since.

deepbew profile image
deepbew in reply to Redraws17

did you take any medication for treating a possible cause of trichomoniasis. It causes similar symptoms like burning, slight discharge without any fevers and chills (something the other stds cause) but with the addition incentive of coming and then disappearing.. The treatment is pretty cheap and convenient too i.e. single dose of Flagyl(metronidazole) 2g.

deepbew profile image
deepbew in reply to Redraws17

please reply quick because iam in a similar situationa nd have decided to go for a trich treatment i.e. falgyl for a week, if that works then it might have been trich the whole time for you as well as me.

Redraws17 profile image
Redraws17 in reply to deepbew

i was tested and came back neg, but i was never treated for trichs

deepbew profile image
deepbew in reply to Redraws17

well, according to doctors it is somewhat difficult for trichs to be diagnosed in men and if left untreated can lead to prostatitis as well, ask your doctor regarding flagyl i mean what is there to lose at this moment?

UnderPressure profile image
UnderPressure in reply to deepbew

Hi deepbew, did this work for you?

Cpps2yrs profile image
Cpps2yrs

had same symptoms for past two years although i also had penile numbess and thick chunky semen. at one stage for about a month my symptoms got 80% better but i think i hurt my back and they came back alot worse, anyone else here think itcould be back related?

deepbew profile image
deepbew in reply to Cpps2yrs

how did they get 80 percent better? what were you taking?

Cpps2yrs profile image
Cpps2yrs in reply to deepbew

i honestly wish i knew, i was drinking alot of water mixed with lemon and laying down alot

deepbew profile image
deepbew

have you tried any antibiotics like doxy or different varieties to rule out resistant bacteria causing the uti? and btw how long did the burning develop into pain before you started cipro.

deepbew profile image
deepbew in reply to deepbew

btw is it pain like pain pain (if it makes sense) or solely burning? please do respond, in a similar situation.

Redraws17 profile image
Redraws17

Infection caused the burning and allodynia of the penis along with burning and itching upon urination . Cipro took away the infection along with ALL of these symptoms. Then 4 days later the burning unrelated to urination came back along with the penile allodynia.

Yes I've tried doxy, didn't work.

The burning itself is pain, yes it's not horrible horrible pain but it's so uncomfortable.

deepbew profile image
deepbew in reply to Redraws17

tried any medications for a possible yeast infection?

wbeaman profile image
wbeaman

FYI queensu.fluidsurveys.com/s/...

Redraws17 profile image
Redraws17 in reply to wbeaman

Great, hopefully we can gain further understanding of this brutal ailment. 

ChronicPain1 profile image
ChronicPain1

How is everyone doing?  Did the PN Block help? Found Doxy and Amitriptyline help a little.  2.5 years now with this!  Are you guys aware there is a MRI for the Pudendal Nerve that can be done at Hospital for Special Surgery.  This MRI will reveal any PN entrapment.  

Redraws17 profile image
Redraws17

Didn't help me at all. Was numb for a day and then the pain was right back. I had the MRI done actually with Dr Potter. It came back totally normal for me. 

ChronicPain1 profile image
ChronicPain1 in reply to Redraws17

I hope this doesn't post twice.  I started writing before and something "happened" etc.

Anyway, I've had the Dr. Potter MRI, and it came back normal also.

After rereading the thread of posts, I'm convinced we have the same problem. Here are a few comments and questions in hopes we can help one another out:

Have you tried silk (or polyester) big sized boxers?  They've been a God send to me!  When this thing started I used cotton briefs, but I can't stand the tightness of briefs and the cotton still irritated the penis.

Is there one particular area of the penis which is the most painful in general and with respect to underwear rubbing against it. You menitoned in an earlier post it was from the circumcision line and up. Has that changed?  My worst area is the left dorsal side at the circumcision scar and down a little bit of the shaft (like 2cm).

I also gave up the bicycle as well, however I don't have the pain down my leg. I have had hip pain and hip bursitis. Been through PT for that as well as PT for Pelvic Floor Pain so bad at times I can't sit without a cushion.

Did this pain start days or weeks after a high friction sexual encounter and/or after sex or masterbation that resulted in tiny cut or tear on the penis skin?  

Do you find that a few Alcoholic drinks help a heck of a lot in getting rid of the pain temporarily?  A few drinks works wonders for me.

Can you recommend any Doctors or tests you think might help me?  I live near NYC, but I haven't found a doctor yet who really knows how to help me.

Thank you!  Let's try and help one another! Please!

 

Redraws17 profile image
Redraws17 in reply to ChronicPain1

I switched from boxers and cotton boxer briefs to strictly boxer briefs with VERY soft fabric. Calvin Klein is nice. I prefer tighter because it keeps everything in place. Friction hurts the most. 

Yes very interesting you mention which side hurts the most. For me it's the right side. Don't get me wrong the left hurts too but the right is much more sensitive. 

The pain started 1 day after a pretty high friction sexual encounter. 

I can't really recommend anyone, everything I tried didn't work. 

What drinks help you? 

And how long have you had this go on for? Would like to hear the specifics about it as well. 

ChronicPain1 profile image
ChronicPain1 in reply to Redraws17

Friction is what hurts the most for me too. I try to stay away from tight underwear because it can aggravate pundendal nerve symptoms when I sit down. However, some days I wear the tight briefs because I absolutely can't take anything bouncing around because of increased friction sensitivity that day. 

Both sides hurt me too. It's just that the left side is much worse than the right. I'm not sure if it's because my penis tends to hang just slightly to the right naturally .  Since it hangs to the right, it's the left side that hits the underwear constantly.  I'm not sure if this is just coincidence, but I think not. I'd be curious to know if this theory holds true for you as well.

My pain started the day after a high friction sexual encounter as well. I also had a TINY cut on my penis from that experience as well.

Any strong drink helps such as vodka, tequila, rum, etc.  Two STRONG drinks and I'm 75%-100% friction pain free for a few hours. 

I've had this for 2.5 years.  I've been to 3 dermatologists who say there is nothing wrong with my penis skin.  All three gave me a script for steroid cream, but I only filled the first script which I used for a week (and it helped a lot), but then I stopped using it because I feared thinning of the skin. The internet is full of guys saying overuse of steroid cream on the penis is an irreversible disaster so I'm scared to try again.   Also, I've tried Doxycyline from the Dermatologist, but it got me nowhere. Have you tried steroid creams?

I've gone to 4 Urologists and 2 Neurologists as well.  I've had Cervical and Lumbar MRIs and the Potter MRI.  The Urologists were utterly useless. Only one of the four said my prostate was swollen and put me on Cipro for a few months - no improvement.  The one Neurologist said it could be the Epstein Barr Virus left my nerves damaged and that could cause this (but it was just a theory of his). The other Neurologist put me on Amitriptyline. I'm not sure Amitriptyline works much or at all sometimes.  Aside from the desensitizing I mentioned in the other post to you, I'm not sure it's doing anything.

Have you gone for a Western Blot Herpes test? It's supposed to be 99% accurate picking up what other herpes tests don't. I have not gone for Western Blot, and I am unsure of my herpes status.

Okay, I've hit you with a lot of info and a lot of questions so I'll stop here and wait for your reply.

Thanks!!  

 

Redraws17 profile image
Redraws17 in reply to ChronicPain1

I was tested for Herpes (I don't think the western blot way however), but i dont believe i have herpes, never any outer symptoms. However, right around the time I had a suspected UTI I had molluscum contagium which has since eradicated itself. This is a similar viral infection which has been known to cause nerve damage Ive heard, albeit never in this area, but i don't see why the genital area would remain immune to it. 

The alcohol negates the allodynia you're saying? Thats quite remarkable. Doesn't have the same effect for me unfortunately. 

Yea Ill never use steroid anything, they're really bad for the body. I had a nerve block with corticosteroids and they gave me bad side effects for a month or so. 

I assume you have this pain 24/7? I do. This leads me to believe that it is in fact nerve damage. I think the best shot for us is the advancements in stem cell therapy. I check on it regularly and it is moving forward promisingly it seems. 

ChronicPain1 profile image
ChronicPain1 in reply to Redraws17

I have never had any outer symptoms of herpes either, that's why I doubt I have it. Just bringing it up as a thought since it can apparently exist without being visible. 

Very interesting you had the molluscum contagium. Was it on the penis and if so was it near your most painful spot?

Yes, I have this pain 24/7 and it's killed my social and sex life.  I don't know anything about stem cell or how it would help. I'll have to look into that.

Have you tried amitriptyline compounded cream and put it on your penis?  Also, does your right side hurt more because you hang to the right and it brushes against the underwear?

Any other tricks you've found to cope with this that I might try? My #1 complaint is the friction from underwear when walking. It keeps me from going out and enjoying life. I used to be non stop on the go, now I just stay at home.

Redraws17 profile image
Redraws17 in reply to ChronicPain1

I first had spots on my pubic area, then this pain started on the penis because of the infection. Later the spots appeared on my penis, around 2-4 at any given time, but then 2 months later they were gone. 

Yea I can relate to that. It just takes the life right out of you sometimes. 

I haven't tried any creams though. I have an active sex life so juggling the times where i have it on and don't because of preeminent sex would just annoy me too much i think.

I do have one trick that has helped me some, and go out much more as of late (last 6 months or so). I use these underwear: 

calvinklein.com/shop/en/ck/...

The fabric is amazing, and they are reasonably tight so i have very little movement which doesn't affect me too much. Don't get me wrong I still feel a mild burning, more so when sitting down. But the friction pain is almost nonexistent. They're really expensive online or in any retail location EXCEPT outlet stores. Think I got them for around $16 a piece. 

Now when I sleep, I use a different underwear: 

ebay.co.uk/itm/RBX-MILK-SIL...

It says silk but the purple/black ones are not. They are a VERY soft cotton and have a ton of stretchability so you don't feel trapped when sleeping, especially in the morning if you know what i mean. 

I know you said the tighter ones are more difficult to handle but I say give them a try regardless. 

I know its not much but its the best Ive got so far lol

wbeaman profile image
wbeaman in reply to Redraws17

any updates on your end Redraw?

ChronicPain1 profile image
ChronicPain1

Have you tried desensitizing techniques such as deliberately rubbing soft cotton back and forth over the sensitive parts to desensitize them.  I've had some luck with that.  It hurts a little more at first and then calms down and is better a few hours or a sometimes a few days later.

Redraws17 profile image
Redraws17 in reply to ChronicPain1

Yes I have, but it's so painful and I haven't gotten much out of it so I stopped. 

ChronicPain1 profile image
ChronicPain1 in reply to Redraws17

I've tried the desensitizing when taking amitriptyline (pills not compounded cream/ointment) and not taking amitriptyline. When on the medication, I found the desensitizing technique to work somewhat better than when not on the medication. Just something to think about if you want to try but don't expect miracles. 

wbeaman profile image
wbeaman

any updates guys?

Alexdude profile image
Alexdude

Hey guys, i hope you guys are doing better. I thought i'd help... I have a similar problem (still unresolved but had made progress). I hurt myself masturbating too much when I wss going out with a girl but was in another country and couldn't have sex. Damn. If only hadn't been so stupid. Anyways I thought i'd help a bit: There's this book that deals with body alignment. It's called Pain Free by Pete Egoscue, I realized my pain diminished whenever I did the hip and groin exercises. And being aligned feels pretty good. I'd have to say the pain in my penis almost went away completely, but then before it cured i had sex and the condom somehow made my foreskin get stuck, and I had a terrible painful ejaculation because of it. So back to square one Ha! Sucks. But the alignment execises worked nevertheless. Another thing that helped a lot was realizing that I was placing too much focus in my penis area. If you read freud you'll realize we're having similar mindsets that a hypochondriac has. It's not the same, but what you have to realize is that your focusing too much on your penis. And this causes more pain. I'm not saying not to take care of it, what I'm saying to try to put your full focus on other things so that you don't weigh in more inlammation than what your penis already has. Too much focus is like placing too much energy on one thing. And too much energy can heat things up. You get me? ;) Let it heal by itself. Be aligned, i think that's a major cause, and let it heal. Focus on other things keeping in mind the fact of caring for yourself, but without obsessing over the problem too much, after all if the problem is chronic inflammation, realize that inflammation cures itself when the muscles are functionibg properly in the site of pain, that's why having your hips and spine aligned could target this problem indirectly. Inflammation usually appears because there's a muscle doing more work than the others (it took me over 5 months to have my body better aligned so be patient with your alignment). However this is easier said than done. However it worked for me, along with the pain free book. It's tough, but you'll get out of this a much stronger person. Good luck people. I wish you wellness and pain free! Luv you all :)

ChronicPain1 profile image
ChronicPain1 in reply to Alexdude

Alexdude, thanks for telling us about the book and how it helped you. Based upon your review of it, I've just ordered the book! I believe that alignment is extremely important, and I look forward to the book arriving so I can start to do some of the exercises. I try and do my best not to focus on the pain as I'm aware that focusing on pain intensifies it and reinforces the negative effects it has on the feedback loop between pain site and the brain. It's not easy to ignore the pain, but I get where you're coming from. Thanks again for your post.

How are you doing? Still improving?

doomzeal profile image
doomzeal

Dont discount this. I know it sounds nuts, but try first, checking for mold, mold can cause similar symptoms over a long period of time, as fibromyalgia. Fibro, can be confused with spiritual attack. 32 years of laughing at it till I was in so much pain, especially , of course, Sacral area pain in that endocrine center. Biblical Lore, all religious texts refrence seals, 7 , pathways, emotion.. get it? Chakras attacked by incubus. Burns in hips, waves, like, a force that presses against you. cold spots, in the air around you.. not like cold air, but like .. cold enrgy man.. idk. look into it, if a little prayer can fix it, a little awakening the eye of the mind.. you'll be happy.

Jason86 profile image
Jason86

I'm too having issues with left perineum, base of the penis and left testicles since past 1 year. It may have started with masturbation and than continued with prolonged sitting.

I'm having following symptoms.

- Can't sit on hard surface at all. Have to use cut out cushion.

- Have pain at the base of penis and increases with direct pressure on it or rapid movements.

- Longer time erections.

- Ejaculation

As all, I have been to several urologist, neurologist and pelvic therapist. Still fighting to overcome it.

The thing that helps me is

- wearing loose clothes, underwear. RALPH Lauren briefs with 1 size bigger works.

- As someone mentioned having 2 drinks does help, not sure how though I am in my complete consciousness.

- Cut out cushion

- Always modifying my position from sitting, walking and sleeping. Won't recommend standing.

- Bucket kind of seat helps over the seat that slopes down but with softer base.

There are many more things..

I have kind of found ways to stop the pain but still working on getting improvement in mobility and get back to activities.

If anyone have overcome this please do share the steps taken to see progress..

I think body alignment sounds good. Can someone share 2-3 alignment correction that must have helped during sleeping, standing, exercising.

ChronicPain1 profile image
ChronicPain1 in reply to Jason86

Jason,

I've been suffering with sitting down pain for almost 7 years and with penis pain for 3 years. I carry around a cushion and must be really careful where I sit and for how long. Based on all you wrote, I'd say you have Chronic Pelvic Pain Syndrome for sure, Pudendal Neuralgia or Pudendal Neuropathy possibly, and/or Chronic Prostatitis. I wish i had more answers for you, but I don't.

Do you have pain when your penis rubs against your underwear as you walk?

Jason86 profile image
Jason86 in reply to ChronicPain1

ChronicPain,

No, I don't have notable penis pain on walking. But do have at the base of penis while sitting little longer even on cut out cushion. This is because when you sit your underwear gets pulled towards the penis. And you can't sit anywhere without underwear. While walking/standing the only time it hurts when I get erection with underwear.

Hope people paste some success stories here.

ChronicPain1 profile image
ChronicPain1 in reply to Jason86

This is why I wear over sized silky boxer shorts so that the underwear will not pull upwards on my goods or be too tight. Honestly Jason, I haven't heard of many success stories. I do, however, think the way to getting better is to ask questions on sites like this and to offer our own bits of advice. The things we can learn from each other will help most likely to make things less painful. Doctors don't care or understand. It's up to us to help each other.

Jason86 profile image
Jason86 in reply to ChronicPain1

Yes. True. We need to guide each other.

Oversized boxer sounds good for sitting but for me it doesn't work while walking/stairs as my testicles hurt when they bounce, may be pulling a nerve.

So I wear oversized briefs.

ChronicPain1 profile image
ChronicPain1 in reply to Jason86

Yeah, I had to buy a ton of different kinds of underwear: boxers, boxer briefs, briefs, etc. until I found what worked best for me. I spent a lot of money on underwear to try out, and nothing solved my problem. I had to choose what had the least downside. We both have the sitting pain so I know you can appreciate how having loose underwear is critical for that. But then we differ with me having penis rub against underwear pain, and you have ball pain from bouncing and need support. I'll send you a private message with ideas to help you as I don't think it would help anyone else here.

KK1983 profile image
KK1983

I found this forum while searching for information on symptoms for the problem I have been having for the last six months. Rather than start a new thread, I thought I would just reply here since your situation sounds very similar to mine, to some extent.

I am 33 years old and for the last six month, I've had a mystery pain/sensation in the tip of my penis that alternates between a sting, a tingle, and a wet/dull feeling. It doesn't hurt when I urinate, but I do have discomfort in varying degrees throughout the day. Sometimes it's difficult to urinate. Sometimes very little comes out. Sometimes a lot (and I mean a lot) comes out. I have post-void dribbling nearly every time I go to the bathroom, and I also have a split stream some of the time.

The problem has also really dulled my ‘urgency’ to use the bathroom. Very rarely am I aware that I ‘need’ to go. Now I just assume I always have to go, and try every half hour or hour to see if any urine needs to come out.

Because the internet is an endless hole of misinformation, everything you search for these kind of symptoms tries its best to convince you that you've contracted an STD. I tested myself for gonorrhea and chlamydia and the tests were both negative. I also have had two urine screenings—one done by my general practitioner, and one done by a urologist. Both screenings showed no abnormalities.

I also occasionally have a discharge that comes along with my urine while I’m having a bowel movement—it usually looks like a glob of semen along with a clear, very sticky substance.

My GP diagnosed me as having something wrong with my prostate and I tried a 20 prescription of Cipro and saw no improvement. Following that, I went to the urologist, who told me it sounded like I was doing something that was irritating the walls of my bladder—some kind of food sensitivity, he said—and that I should cut back on the amount of coffee I am drinking (I am down to 2 cups in the morning only now rather than drinking it all day) and he gave me a month prescription for doxycycline. Again, no real positive results.

The urologist also examined my prostate and told me it felt ‘small.’

The next step was to have a cystoscopy, which sounds like literally the worst thing to possibly happen and I am afraid of going down this road.

I’m at a loss on what to do next.

I don’t know if I should see a second urologist for another opinion, or what I should do. I am frustrated and losing my patience, and despite the countless forums and message boards I have seen with people having similar symptoms/problems, I have never felt more alone in my entire life.

For a while I thought it was stress related. I had a very stressful job that was taking its toll on my mental health. I recently left that job for a less stressful one and was hoping that I’d see some improvement but I haven’t really.

There are moments where it is less bothersome than others, but then there are times when I just want to cry.

The weird thing is is that in the beginning, when this all started, I felt symptoms for a week, then it went away for a month, then it came back, then went away again before being a constant problem since the beginning of May.

If anyone has any similar stories or experiences to mine, I’d like to hear them to understand more of what may be happening to me.

Elcapitan92 profile image
Elcapitan92 in reply to KK1983

Hey man i am having the same issues but it's been on going for years.

Ever since a football hit me in the testicles when I was around 17 may be (23 now) it's not been the same. Well it's really on and off but it's going on a bit now.

I'm too worried to get it checked, I do have a bad habit of holding my piss so it could be something to do with that. It feels uncomfortable.

I worry about it all the time. I don't think it's an STD (well hope not) but I just haven't had it checked yet. I had the same thing few years back and I got tested which came our negative on two occasions but I haven't checked recently. I'm scared it's an STD but I just need to push myself in getting it checked. But what I find strange is that It has been like this since that football incident and I didn't have sex till about 18.

I hate reading and checking but it's just uncomfortable. Although it's a slight consolation knowing I'm not the only one that has this unusual feeling. I feel embarrassed.

ChronicPain1 profile image
ChronicPain1 in reply to Elcapitan92

Elcapitan,

I thought I replied yesterday to you, but something must have gone wrong with the post. Anyway, my question is that football that hit you in the testicles, was it a really bad hit in the nuts or just an average hit? Because if it was a bad hit, I could see it leading to some of these problems. Also, I wanted to encourage you to seek help from a Doctor because you are so young. Don't be scared, don't put it off, you could stand a good chance of getting better because of your age. People in their 20s heal much quicker and better than older people.

ChronicPain1 profile image
ChronicPain1 in reply to KK1983

Sorry to hear you're going through all this. I don't know enough about urinary urgency or infrequency problems. Something to keep in mind is that Cipro is now being widely criticized for causing all kinds of side effects and doctors are thinking twice about prescribing it. Another thing is that stress could have been the needle that broke the hay stack, but removing the stress does not remove the problem. Stress reduction or elimination will help, but I've found it doesn't solve the problem. I know how you feel when you say sometimes you want to cry. In fact, just the other night I lost it and cried. I've been having sitting down pain for 7 years and pain in my penis when it rubs against underwear for 3 years. It's enough to drive a person crazy. Also, there's no problem going for a 2nd or even a 3rd opinion with Urologist, but I would caution to keep your expectations low. Doctors know very little to help us. They might help you more because urinary problems are more common than penis pain problems.

Have you looked into going to a pelvic floor physical therapist who will do internal massage work on you? Your muscles around the prostate and bladder sound tight or in spasm.

KK1983 profile image
KK1983 in reply to ChronicPain1

to my knowledge there is no pelvic floor physical therapist in the area and i don't really feel like commuting somewhere to look into that as an option.

i do have an appointment next month w/ a local urologist to see what he thinks and maybe get an additional opinion. currently my symptoms have changed yet again and overall i guess i am feeling better than i had been, but still not 100%. i guess all i can do is take it one day at a time.

ChronicPain1 profile image
ChronicPain1 in reply to KK1983

Pelvic floor physical therapists are difficult to find, but honestly it's worth the effort to go to one for at least a few sessions even if they're not in your area. If you're in the NY or NJ area, let me know. I can recommend some people.

OhHey profile image
OhHey in reply to KK1983

Hey KK1983, kinda having similar issues. Wondering how you got along with yours. Early last month, I just got home from the gym and decided to masturbate, and in doing so, felt a dull ache on the side of my shaft, almost like someone was slightly pinching me. I immediately thought it was cancer, since I have a nodule there in the same area and it felt like that was the source of the issue. I sought no treatment however and never went to see my doc, but I did ask him his thoughts, and he suggested that frequent masturbation might've caused a blood clot to form in a small blood vessel, and cause an issue there. He said to wait a month and see if anything changes. The pain has reduced quite a bit, and I occasionally feel a small pinch maybe a handful of times through the day instead of naggingly. As of 24hrs ago though, I started having that urgency feeling though, and a feeling of urine caught in my urethra. I think this is a tense floor response or psychosomatic as if I don't think about it, it'll go away, and I recall having this sensation before when I was scared shitless about my testicular cancer about 8 years ago. It's some sort of fight/flight response since we don't understand what's going on. Anyway, what did you find out, if anything? Did you ever notice a change in position, frequency, or sensation of the pain/ache you were feeling?

KK1983 profile image
KK1983 in reply to OhHey

truthfully, since so much time has passed since i first posted here, i kind of forgot how i used to read message boards like this one, and other places, to try to find answers or more information. in some cases, the things i read just made me feel worse, or worried.

i'm in a better place, overall, than i was 2.5 years ago, or whenever all this started and i began looking for answers. the constant discomfort and pain i was in is long gone, and my urinary problems (dribbling, split stream, difficulty going, et. al) have also disappeared. part of it may be because i was working a job i hated and literally wanted to die. i got a different job, and within the first few months, the actual pain i was in started to go away, but i was still having some symptoms here and there.

the second urologist i saw put me on medication for a year, and i saw some improvement, but i still have discomfort occasionally after i urinate, and some minor strange feelings down there off and on. after that first year, he put me on something else, and maybe there's been a little more improvement? i don't know. it sucks and sometimes i get frustrated and upset that this is happening to me but, like, the really serious and severe problems are gone now so i'm wondering if this is just how it is now, and i did some kind of irreversible damage to my bladder or something else because of stress. it may also be something i'm eating/drinking, but i think that'd be hard to track.

OhHey profile image
OhHey in reply to KK1983

Oh wow, man, great to hear! I'm glad things are almost entirely resolved. Do you recall the meds you were placed on?

KK1983 profile image
KK1983 in reply to OhHey

right now i'm on Detrol

ChronicPain1 profile image
ChronicPain1

Has anyone found the answer yet? Any medications that help? Anything at all?

wbeaman profile image
wbeaman in reply to ChronicPain1

No updates here. Started a diazepam / diflucan suppository today. Will let you know if they help.

ChronicPain1 profile image
ChronicPain1 in reply to wbeaman

Look forward to hearing how it goes for you. Good luck.

wbeaman profile image
wbeaman in reply to ChronicPain1

so far so good with these suppositories. Its 10mg Diazepam / 10 mg Baclofen. Hasn't solved the problem, but has reduced symptoms a bit. Worth a try if you have a compounding pharmacy in your area and a willing doctor.

ChronicPain1 profile image
ChronicPain1 in reply to wbeaman

I have read that the valium suppositories work best when you know your rectum is empty because more of the medicine can absorb into the muscle and tissue. Something to keep in mind. I'm glad to hear it's helping you.

wbeaman profile image
wbeaman in reply to ChronicPain1

quick update - the Valium/Baclofen suppositories have not been effective in my case. Going to continue them for another 3-4 weeks but if there has been any impact, its been very minor. Wish i had better news, but back to the drawing board.

ChronicPain1 profile image
ChronicPain1 in reply to wbeaman

Sorry to hear that!

c1989 profile image
c1989

I've been having almost the exact same symptoms, for the last 6 months. I've been to the doctors numerous times, but describing my symptoms successfully is difficult, as I live in Thailand. This is the first time, that I've actually listed my symptoms to English speaking people, as I'm too embarrassed to tell my friends in Thailand about it.

So, my penis was feeling fine. I had just arrived back in Thailand, late May, this year, and I got with a girl. At one point, she was playing with my penis, with her hand, and she tugged it to hard and too far down, pulling the skin of my penis down too far down. Luckily, nothing ripped, but it hurt like hell. About 5 minutes later, I got over the initial pain, and I thought I'd be alright.

The next day, or 2 days later ( I can't remember, but one of these days) my penis was burning, on the outside of my penis head, around the rim, but only in two different places. It came in waves, but was always there, and would often become unbearable, especially when laying in bed or sitting down. Standing up, seemed to relieve it a bit, and still does.

To this day, the pain still remains, coming in waves, and still sometimes really hurts. Standing up relieves the pain. I've also noticed that when I urinate, after doing so, the top side of my head of my penis seems to brighten, so that it's a brighter shade of pink. But then the colour subsides to normal. The discolouration after urinating doesn't happen all the time, but frequently.

Also, as I'm not circumcised, the upper skin of my foreskin, when my foreskin is over the head of my penis, is often more tender to touch than usual.

I ride a motorbike in Thailand, and often, when I ride it, my anus, and the area around my anus, stings too and this is accompanied by the stinging on my penis. In fact, the area around my anus stings most of the times when I'm sat down anywhere.

I've always assumed it's nerve-related. Thai doctors have never diagnosed me with that. They've guessed things like inflammation in my penis, herpes and maybe something muscular. I've taken medication for all of their diagnoses, but the symptoms still remain. I hope someone here will find the cure soon.

ChronicPain1 profile image
ChronicPain1 in reply to c1989

These things are so hard to figure out. Sorry to hear about your situation. Your symptoms sound like Pudendal Neuralgia. The anus pain from the motorcycle and the penis pain are most likely related to one another. Does your penis hurt when it rubs against underwear? Or do you think your foreskin helps to protect you from more pain? Or does the foreskin make it worse?

dubs profile image
dubs

hi guys... thought id add my two cents

First up, Im a medical doctor.

Second, and more importantly, your stories resonated with me. some of them sound like testimonials i could have written about my experiences.

In short - after a regular masturbation in 2005 i developed allodynia and glans hypersensitivity that really affected my life. I coped by drinking to get through sexual encounters. I spent too much time searching for underwear that caused the least amount of friction. I had most of the tests described above, with no progress. After a few years, I was told to stop worrying about it, and that nothing was wrong. I must admit, after this, it resolved. I could have sworn that id seen redness and skin changes, and that my pain was all too real, but after this it subsided, and didnt bother me from 2007-2016.

Then in the last few months its returned. Back to worrying about underwear, avoiding sex and masturbation, being angry with the world and frustrated about it all. I cant think of a precipitant at all.

An aside - I've had nerve problems before, and elsewhere. Ive had a nerve condition in my brachial plexus and lateral cutaneous nerve of the thigh. I also get a numb penis when i ride, which I've recently stopped. Ive also had multiple pelvic problems - three hip operations, as well as severe osteitis pubis. Interested to hear above that some of you have had similar. Not sure if they're related, but entirely possible.

Im not sure whats going on, but symptoms such as mine are classic neuropathic pain - principally allodynia and hyperalgesia/dysasthesia. (id describe it as small shards of glass being rubbed into the glans with any friction at all) Chronic and neuropathic pain, like all pain, is clearly made worse by ones mental state, preoccupation with the pain, coping skills... etc etc. The truth is, once a "biological" (read medically diagnosable) problem is excluded, the limits of western medicine have been reached (which can be surprisingly quick to arrive at) and were left with anti neuropathic meds (namely pregablain/lyrica, amitriptyline, gabapentin) and lifestyle/psychological and alternative therapies.

I write this out of solidarity with you guys. Its effin hard and I'm struggling with it big time. Just knowing others have it (especially when the medical world, as per usual, dismisses you because it can t explain what youre experiencing) can be very helpful.

I wish you all the best. Be gentle on yourselves. Accepting the pain, even without a diagnosis, is extremely hard, but can be the door you need to push through to get to the other side. Submitting to things (which id love to be able to do) and accepting that this is how life is (with a hope, but not an expectation, that things will improve) is a worthwhile pursuit!

ChronicPain1 profile image
ChronicPain1 in reply to dubs

Dubs,

I enjoyed reading your post. You describe your pain as "small shards of glass being rubbed into the glans with any friction at all." My pain is right below the glans on the left side of the anterior shaft. I'd describe my pain as sandpaper being rubbed against the shaft when underwear makes contact with it- on good days light sandpaper and on bad days industrial sandpaper. On really bad days, it felt like a stake knife was being slid over the skin. I managed to rid myself of the stake knife type pain by doing the following:

About 1.5 years ago, I pinpointed a tiny area (about half the circumference of a pencil eraser) that was the epicenter of the pain producing area. I tried desensitizing it by rubbing fabric against it in all directions (criss-cross, etc), but the results were immediate increased friction irritation for a few days, followed by a few days of mild to moderate beneficial relief of friciton symptoms, followed by a return to ground zero. Then one day, I daringly decided to squeeze the heck out of that tiny little area like one would squeeze a pimple with their fingernails. My goal here was to kill some nerves or a neuroma (if it was there). Immediately after and for the following one week, the pain was pretty bad, but then by the second week I had significant permanent improvement. This very daring procedure I did to myself helped me. I am not a Doctor like you are. I am not recommending this to guys out there to do. I'm simply sharing what I did, and the results of it.

I absolutely agree with you that the more you think of it, the more you're going to feel it. I have suffered from what has been diagnosed as "chronic pelvic pain syndrome," coccydynia, and/or pundendal neuralgia. These diagnoses precede the penis friction pain by 4 years. What I'd love to know is if these things are absolutely related, or if I got the penis pain from a bad cut from bad oral sex and that the penis pain is a separate issue from the pelvic/pudendal/coccydynia problem. Knowing which caused the penis pain would help put my mind at ease.

What could have caused your symptoms to disappear for years and then suddenly return? Could it be stress? Weight lifting? Sex? Excessive sitting or cycling? Your case intrigues me because you were in "remission." Also, you're a medical doctor, and I can sense from your post that you really do "get it" with respect to this problem.

Amitriptyline was useless; lyrica/gaba/etc. ueselss. Cymbalta made me airhead but helped the symptoms. Valium suppositories seem hopeful. Anything opiate, I would imagine helps but I wouldn't know. Sears sells boxers that have silky like material that is actually polyester. Those boxers have been a gift from God. I highly recommend looking into it. The brand name is covington.

Look forward to hearing what you have to say about anything or everything I just wrote.

Thanks!

Dehregret profile image
Dehregret

Its been 6months since the penile tip pain started. After receiving oral from a random 40year old woman. The pain started immediately after the encounter and has not stopped since.

I had other symptoms such as foul odor, constant urge to urinate...which cleared with antibiotics. I've tried a lot of medicine (azitro,doxy,macrobid, sporanox(fungal),pregablin,amitryptiline, cortiosone creams) and nothing seems to work.

My penis looks normal but the constant penile tip pain is always present. At one point I had a tender prostate (dre exam) but I dont anymore. Dr says prostate feels normal. He wants to do a cytoscopy to be sure its prostatitis and not IC but I'm so afraid of further damage and by what I've read most people dont find anything by this exam. Also, I dont have the urge to urinate, so why would I have IC?

I also took a PCR semen test, after 3months which showed + for chlamydia and I got a large dose of doxy with azitromycin. The pain never went away. Retested in different lab and it showed negative for chlam/gon/ureaplasma.

Really confused at this point. Im currently on amytriptyline and Prosta-Q(2months) with no real improvement. Pain is present since I wake up till I sleep 24/7.

I want to think I have something like a fungal infection due to the abuse of broad antibiotics for the past 6months but nothing shows on cultures. From what I've read, cultures are terrible and dont grow anything most of the time.

Im taking sporanox again at my own suggestion (thinking it might be fungal) 5 days in with no improvement.

Has anyone tried coconut oil on their penis? At this point I'll try anything to feel "normal" again. Any suggestions?

Also, how can this be "non bacterial prostatitis" if my symptoms started after unprotected oral sex

Sorry for the long post

wbeaman profile image
wbeaman in reply to Dehregret

poorly understood condition. It could non-bacterial in a few ways:

-it was a rough BJ that caused some sort of physical damage to your penis

-the BJ triggered guilt or some sort of negative emotional response (consciously or subconsciously) that is causing inflammation and is causing your nervious system to become hyper-sensitized. You think something is wrong, and your brain is sending signals to "protect" the area you think is affected, which causes tightness, inflammation, ect. I know this sounds weird, but the more I read about this theory, the more it makes sense.

Bottom line is that you've taken a wide range of ABx over a long period of time, and haven't seen any improvement, which is pretty strong evidence that your problem isn't bacterial.

ChronicPain1 profile image
ChronicPain1 in reply to wbeaman

With all due respect wbeaman, I think your theory is complete Horse Crap that "the BJ triggered guilt or some sort of negative emotional response (consciously or subconsciously) that is causing inflammation and is causing your nervious system to become hyper-sensitized." I've heard this theory before, and I am telling you it's wrong 99% of the time. I have suffered with this problem for 3.5 years, I've been to all kinds of doctors, taken all kinds of meds, been through pelvic pt, tried other alternative desensitizing techniques, etc. Of all the doctors I've seen, only one had the balls to tell me what you're saying. Trust me when I say, you might be right 1% of the time and I'm being really super generous with the 1%. I have absolutely no guilt whatsoever about the BJ I got.

Bottom line here wbeaman, unless you've been through this yourself and know for a fact your pain was caused by guilt or shame brought upon yourself, then please stop wasting everyone's time and throwing guys into more anguish by making them think they're doing this to themselves. Shame on you!

Doctors don't know everything! And few guys get this problem so there's little money or purpose in the medical profession figuring it out. The pain is real, and it's not stemming from the head. I do think that getting out there in the world, trying to not think about the pain, trying to enjoy life, do the things you like doing - that all helps to lower the awareness of the pain. But the pain is real, and we're looking for answers here, not unlikely theories.

wbeaman profile image
wbeaman in reply to ChronicPain1

You're entitled to your opinion but you can say that exact same thing about any of the other common treatments for this condition. Your pulling out your "99%" numbers out of nowhere. Have antibiotics, internal pelvic physio, or anything else done anything for you?

If they haven't, I don't see a problem with looking at all possible factors including looking at the mental side of this condition. He asked about theories about "non-bacterial" and this is one of them (whether you like it or not). Up to you whether or not to explore this option but I don't see a problem with it.

There are plenty of studies that show that the brain plays a major role in many chronic pain conditions. If you choose not to accept that research, that's your choice, but the alternative is to just do nothing except go on the internet and complain about the medical system which isn't a productive approach in my opinion. I am not saying to completely discount other causes, and I'm not calling any of us "crazy", but in the absence of any tests showing a physical problem combined with a lack of response to physical treatment options, I don't see a problem with looking at mental approach. Worst case scenario you'll pick up some coping strategies for dealing with the stress this condition causes, best case it helps.

So, shame on YOU for being so closed minded and discounting an approach that could possibly help some people. I've talked to more people who have taken this approach and found success than any other approach.

Dan2017 profile image
Dan2017

Did you ever find any relive ? Been going through this for a year and a half ?

ChronicPain1 profile image
ChronicPain1 in reply to Dan2017

Sorry man but still not real relief from this. What are your symptoms exactly?

wbeaman profile image
wbeaman

Hey all, there is study being done by a network of colleges in the US. If you live close to one the sites, I suggest you get in touch and participate.

"Do you or someone you know suffer from symptoms of Urologic Chronic Pelvic Pain Syndrome (”UCPPS") ? As with many chronic pain disorders, UCPPS, which includes both interstitial cystitis (IC) and chronic prostatitis (CP), is poorly understood and treatment is often not helpful. Patients with lC or CF are being recruited for a new study called the ”Trans—MAPP Study of Urologic Chronic Pelvic Pain: Symptom Patterns Study (SPS). ” The goal of this study is to better understand why certain treatments work in some patients, but not others. If you qualify and agree to take part in this study, you may help doctors gain a better understanding of how IC and CP affect individuals’ overall health. To find out more about the Trans—MAPP SPS please contact the participating MAPP Clinical Center nearest you:

University of Michigan - Ann Arbor, Ml

Contact: Megan Halvorson (734)998-6839

meganeb@med.umich.edu

Northwestern University - Chicago, lL

Contact: Darlene Marko (312) 695-3898

d-marko@northwestern.edu

Washington University in St. Louis - St. Louis, MO

Contact: Vivien Gardner (314) 747-6192

gardnerv@wudosis.wustl.edu

University of Iowa - iowa City, IA

Contact: Mary Eno (319) 384-9265

mary—eno@uiowa.edu

University of Washington - Seattle, WA

Contact: Kelly Robertson (206) 708-8678

Stephanie Richey (206) 708—8672

mappuw@uw.edu

UCLA / University of Southern California - Los Angeles, CA

Contact: Suzanne Smith (310) 206-0310

srsmith@mednet.ucla.edu

Cara Kulbacki (310) 206-1757

ckulbacki@mednet.ucla.edu

"

ChronicPain1 profile image
ChronicPain1

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?

elvirr profile image
elvirr

Have had the same thing.. Thought for a while that I cured it with swimming which gave relief but had oral sex with a girl and the thing came back again...

swimming was a big surprise and still ask myself why it gave me relief... I know that while swimming I pee a lot. 4 5 times.. maybe because of that

ChronicPain1 profile image
ChronicPain1

sounds like either the chlorine was helping you (I don't know what that would indicate exactly) or that the increased blood flow from swimming was helpful.

Dgm5186 profile image
Dgm5186

I have a very similar story to many of you. It's late now so I will post my story tomorrow. This is so frustrating!

ChronicPain1 profile image
ChronicPain1 in reply to Dgm5186

I look forward to hearing your story!

Prostateprobz profile image
Prostateprobz

New to the forum and experience some of the same issues as most of you. I'm 22 years old and in January my problems started after receiving oral. My symptoms were a sting in my penis that wasn't always there and eventually after about a week I was feeling some burning sensation in my penis after urination. I was then tested for all STDs through specific urine tests, blood tests for HIV and hsv and urine culture. My initial urine analysis was that there were white blood cells and nitrates found which I was told was common for infection. I was placed on bactrim and things started feeling better but I still felt as if I wasn't 100%. I then was put on a single dose of an antibiotic I can't remember the name of in case the culprit was trich. After this I saw a urologist who after fingering my butt said my prostate felt a little mushy. He put me on the bactrim again and told me to avoid caffeine alcohol and spicy foods. I took the antibiotic and followed the diet for a month and I was symptom free. That was in March. Now after receiving oral about a week ago and I also must add that I masturbated around 10 times in 3 days before the oral. Now I'm starting to feel a slight sting here and there and I'm worried my condition has come back. I'm not totally against the anxiety factor as I do have constant anxiety and worry related to this problem. From what I've read receiving oral sex is pretty low risk and I can't seem to think that a blowjob could of caused this especially after all the negative tests.

OhHey profile image
OhHey in reply to Prostateprobz

Probably know this by now, but you experienced skin irritation from frequent masturbation followed by oral stimulus. The saliva and sucking action attributed probably. Saliva can help destroy proteins (guess what your skin is made up of?) as it is used to help break down food. It's like a slow acting acid almost. Saliva on raw or irritated skin is not helpful at all, and with the sucking action, it's like leaving a hicky on a sunburn, instant irritation. Give it a few days, don't touch it, hit it with some aloe or Balmex and it should be fine. It would appear your initial issues were completely related to a UTI or infection, so you should be all good by now.

camilooo profile image
camilooo

I might have a solution to all your miseries. I actually read this post during my suffering and found my symptoms to be pretty much identical. I never really write any of this kind of stuff but this post may end your suffering by Jesus' grace.

I had a penile pain last year which prompted me to visit Urologist. He took a urine sample and told me I had HSV-2 in an instant. I was confused as the test was a urine test and I have never had an outbreak of any sort. He put me on anti viral drug for like a week and I thought my life was over.

The pain worsened, like when penis was rubbing against my underwear I was so much in pain and the pain in general would be very spontaneous. so the Urologist started to test my prostate on its functionality. When he tested the urine flow he said that the strength of urine flow was of a concern and started to check my prostate in detail. To detect a virus or bacteria in prostate, he squeezed my prostate gland by sticking a finger in my anus and produced "prostate gland pee" so to say. And what do you know? He detected non-STD bacteria in my prostate gland and determined it "prostatitis". He put me on antibiotics for about 6 weeks and did another 2 check ups on my prostate fluid to ensure i was virus/bacteria free. And voila, the virus was gone and gradually the pain was gone in matter of weeks. The urologist however said, the symptoms of "prostatitis" could come back in minor form but your prostate should be just fine. It has been more than a year I haven't had a problem, but since I have had the symptom for like 6 months previously I seemed to feel phantom pain occasionally but all is good. So there you go! check your prostate for "PROSTATITIS", it's hell of a bastard.

If you have any questions do let me know.

JohnnyMarket profile image
JohnnyMarket in reply to camilooo

Which antibiotics did your Dr prescribe for the 6 weeks, camilooo?

jjbfitness profile image
jjbfitness

I can feel your frustration. I am in the Health and Wellness field and been dealing with this mystery penile pain/hypersensitivity for 3 years now with no definitive diagnosis. I have been to 4 different Urologists who all say normal exams. PSA low, prostate fine, about 15 urinalysis no infection, Lower Lumbar MRI, CT scans, and a cystoscopy which I never want to get again. I have been to a Neurologist also including my PCP many times. They said no nerve entrapment however my professional opinion is that it is coming from my back due to tight pelvic muscles. Some times it is hard also to wear underwear especially by the tip is where the sensitivity is. Pain can go away for months then reappear. No yeast infection either. So after probably about 30 appointments/tests still no answer.

JohnnyMarket profile image
JohnnyMarket

First time on here. It's crazy how everyone's story is so alike. Mine is pretty much the same, but I had sciatica for 2 months prior to the penis pain. My penis pain has been going on for a year now. Started with rough unprotected sex. Never tested positive for any STDs or infections. Been to 4 urologists, a couple pelvic floor therapists, a couple PCPs. Nothing has helped EXCEPT for my first round of doxycycline. That cleared it up for about 3 days. After that, it was back to normal. CONSTANT urethra/meatus burning. Going to get a pudendal nerve block soon and start taking Cymbalta.

ChronicPain1 profile image
ChronicPain1

I'm wondering if anyone has had relief from the pudendal nerve block?

Susan1-2 profile image
Susan1-2

Yes, I have. It reduces my spasms. All the nerve blocks react differently.

jimgart profile image
jimgart

I tried everything for pudental nerve entrtapement

pain and it did not work. Where can I get surgery? Desperate!!

wbeaman profile image
wbeaman in reply to jimgart

Have you tried physio? Diet change? Surgery is an extreme option so make sure you've done everything else possible

bill_and_ben profile image
bill_and_ben

hi guys - just joining this thread.

I have a five year history of severe penis pain. It's obviously an embarrasing condition by most social conventions. To be honest my own family dont know where the pain is and talk about my back pain. I usually talk to other people about sacral nerve damage. Back pain is socially acceptable - pain in your johnson not so much.

pain has been steadily worse over last three years and levelling out in the last two after a change in job and lifestyle to help manage the pain

it is debilitating. I still cant sit in an ordinary chair - not meals out with family or air flights. i can drive for around 20 mins in an adapted car and i cant really lift more than 1kg and use a handheld grabber to pick things up as bending down is painful. I struggle to put on my own socks.

I have used a wide variety of meds

my understanding is that i got a nerve injury following an accident after double hernia surgery and that nerve pain ( to the pudendal nerve) has been very slow to heal and has prompted a pain disorder where my brain has become hypersensitive to anything resembling reinjury.

As part of this pattern I have developed a very specific lower abdominal muscle imbalance where my internal obliques along with induration of tissue around the pelvic area creates an effective body armouring to compensate for my transverse abdominus muscles which have switched off and become chronically tight.

I expect the nerve injury will gradually continue to heal ( growth rates in damaged nerves are exceptionally slow) - my challenge now is to attempt to lengthen the tight muscles ( through stretching and breathing exercises) and develop the beginning an increase abdominal muscle tone.

I am 45 and hope to make an improvement over the next five years in an attempt to gain some quality of life as i age.

I still use meds occasionally - tramadol once a week and if i have an exceptional flare up i combine this with diazepam. This does two things - it reduces general pelvic spasticity and it helps reset the pain centres in my brain. Cannabis doesnt work for me and daily meds use produces too many side effects for me to keep up my job.

I have had steriod injections into the inguinal and pudendal nerve areas and although these have had a generally benefitial effect the assosciated tissue damage in the area means i will not repeat them - the general sedation use in the pudendal nerve block helped me understand how much pain feedback can escalate and needs to be periododically calmed. I refused all medication in the early stages which was probably a mistake looking back.

i also use cialis once a week and will either have sex or masturbate while taking it- this helps with blood flow and as long as i dont overdo sex can help a little - i found viagra too dramatic. I also tend to climax less during sex ( about once a month) as i find although i get some immediete relief it can take a few days for the burning pain that follows climax to settle down.

My understanding is that pelvic pain is a multi modal complaint and that a careful history from a physician can allow anyone to apply general principles to the problem. The pain is so excruciating at times that i can understand why everyone wants instant relief but I am going to attempt a patient approach with private journalling each day as a way to focus my efforts.

The best approach i can muster is

1. switching to an non-inflammatory diet - reducing calories/ sweet snack etc and living off organic fruit and vegetables and bone broth soup as my main intake - recording food intake - as since the injury i have put on 3 stone.

2. swimming 3 times a week to improve abdominal tone

3. trigger point massage over the area nightly five days a week along with breathing exercises and some gentle kegel exercises along with a prostate massager

4. stretching exercises monday to saturday

5. time limiting painful activities - standing to an hour at a time - walking and driving to 20 mins at a time - this means seeking out a reclining chair or toilet to take a break on

6. painkillers after sex at the weekend - not using condoms to reduce the duration of sexual friction and approaching sex with a gentler and more tantric attitude

7. self needling acupuncture in any trigger point areas

8. pain hypnosis twice weekly

9. walking for 20 mins 3 times a day

will let you all know how i get on - thanks for the tips on a butt plug - i will try this

i may also try and find a good masseur

good luck to you all - hope dies last :) so don't give up everyone

dougo1807 profile image
dougo1807

About 15 months ago I started to have pain in the head of my penis after sex. The urologist did a prostate exam and made white stuff come out of my penis. He said I had a prostate infection. I took doxycycline for 2 weeks and it cleared up. A few days later I masturbated and all the pain came back. I've had the pain ever since. Tried taking more doxycycline for 2 more weeks, then took cipro for 2 weeks. No improvement. I started researching and saw people recommending direct injection into the prostate. So I did an antibiotic direct injection, don't know what antibiotic the urologist used, but it didn't work. The urologist then said I may have chronic prostatitis and that it may go away in a few weeks or months. I think he just wanted to get rid of me and my constant complaining about pain. It's been about 13 months now and still no improvement. I went to another urologist and he wanted to do a cysto. I reluctantly agreed. He didn't see anything. He then sent me to a CT scan. That didn't show anything either. Since having the cysto, my pain has increased.

I have since been doing a ton of research. I found this below regarding mycoplasma genitalium. They say it is hard to detect and often doesn't show up on cultures and tests. I showed the urologist it and he said we can give it a shot. He gave me a 6 day course of azithromycin. I started to feel a slight improvement on day 2, but today is day 4 and the pain has come rushing back. Still looking for a miracle. Maybe this will help you those.

en.m.wikipedia.org/wiki/Myc...

wbeaman profile image
wbeaman in reply to dougo1807

If this course of AbX doesn't work, stop chasing the infection and move on to CPPS treatment asap

dougo1807 profile image
dougo1807 in reply to dougo1807

Just a quick question... Has anyone tried antifungal treatment like Fluconazole?

wbeaman profile image
wbeaman in reply to dougo1807

Yes, tried fluconazole, no change.

Hi,

I've been in this boat for the past 3 months. What I'm reading here is not encouraging. :( I'm 40 and married, no chance of STDs.

It came on suddenly, manifesting as a burning sensation along my circumcision scar. I went to a clinic and they gave me an antifungal prescription cream and powder to use on it. The burning went away, but a slight amount of irritation persisted over the next two weeks. The burning then came back and never went away. I doubled up the antifungal medication, which was dumb, because it only caused more skin irritation. After a months of this, my anxiety was pretty high due to the constant irritation and I went to see a dermatologist. She saw nothing wrong.

The irritation persisted, as did my anxiety, for another month. I went to a PCP (I was a new patient and it took a while to get an appt), who also saw nothing wrong and suggested that it was somatic, i.e. my anxiety was causing the symptoms. She did a full set of blood and urine tests (even STDs, lol), and they all came back negative. She referred me to a therapist, and few weeks later started me on nortriptyline (similar to amitriptyline) for the pain and anxiety.

So here I am, 3 months into this and it sucks. Here's a summary of my symptoms:

- Constant rawness/irritation on right side and the front of my circumcision scar. The pain seems to move between the two areas. No bumps, sores, legions, etc.

- I've been urinating frequently, but this may be due to anxiety.

- No urethral pain with urination or ejaculation.

- Skin appears red and raw. Any rubbing associated with sex or masturbation sets off a flare-up that lasts for a day or two. Anxiety over this has pretty much killed my sex drive. :(

- Contact with my underwear irritates it.

- Pain is almost non-existent at night, but gradually gets worse over the course of the day. Sitting irritates it, standing makes it fade.

My new theory is that this is prostate-related, and I have an appointment with a urologist next week. I've been reading about pelvic/prostate problems and how penis pain is often a symptom. My symptoms seem to line up almost perfectly. I have to say that I'm deeply worried after reading through all of these comments. I'll keep you all posted as I learn more.

ChronicPain1 profile image
ChronicPain1 in reply to

It's been 10 days since your post. How are you feeling? Any changes?

hrenly1311 profile image
hrenly1311 in reply to

Hi, I'm new to this and found your post extremely relatable. Can you provide an update from your Urologist?

Pelviccrusader profile image
Pelviccrusader

Have you had pudendal nerve blocks?

ChronicPain1 profile image
ChronicPain1 in reply to Pelviccrusader

I haven't, but I'm considering it. Have you?

ChronicPain1 profile image
ChronicPain1

Has anyone tried using prednisone?

wbeaman profile image
wbeaman in reply to ChronicPain1

Tried it for a month. No change.

Magix profile image
Magix in reply to wbeaman

I read this whole post and find out that my symptoms are EXACT as yours.

Have you felt any difference with physio therapy?

Any relieve?

wbeaman profile image
wbeaman in reply to Magix

nothing sustainable. Still working in it.

ChronicPain1 profile image
ChronicPain1

Bummer

dougo1807 profile image
dougo1807

My urologist prescribed me Uribel to try. Been taking it for almost two weeks. It helped with the pain a little bit. The pain is definitely still there but it's a little less severe. Might want to try it if you are in a ton of pain.

Magix profile image
Magix

I am doing Yoga since 2 months, and feel Some relieve afterwards.

dougo1807 profile image
dougo1807

So I am happy to say I think I found a solution for the issues I was having. I went to another urologist and told him about my problem and what I have tried so far.

HISTORY-------------------------------------------------------------------

My wife had a UTI and was on doxycycline for 2 weeks. her symptoms went away after about 7 days. On day 10 we stupidly had sex and I got a UTI that turned into a prostate infection. A doctor gave me doxy as well for two weeks. I took it and my symptoms went away, but about 2 or 3 days after finishing doxy my symptoms and pain came back after ejaculating. They gave me more doxy and it had no effect. They then gave me ciprofloxacin, for 2 weeks, which had no effect either. Then they gave me 2 weeks of bactrim which had no effects. I then suggested doing a direct injection into the prostate with antibiotics because I ready that is the most effective way of getting antibiotics into the prostate. I don't know what antibiotic the doctor used.

The doctor then said I probably have chronic prostatitis and that I should give it a few months, watch my diet and see if it goes away.

13 months went by with no improvement. I went to another urologist and he did a cysto and looked at my badder and did a CT scan. He didn't see anything abnormal. After the cysto my pain increased even more. I think I got another infection from the cysto. I ended up taking some doxy that my brother had left over from a few years back for something. It stopped the increased pain I was having since the cysto but my old pain was still there. The urologist said he didn't see anything wrong and there was no infection detected in my urine. --------------------------------------------------------------------------------

SOLUTION FOR ME

I went to another urologist and described everything to him. He said the main reason antibiotics often fail with prostate infections is because of the poor absorption rate of the antibiotic into the prostate and poor blood flow to the prostate. He also said it is possible for an infection to be present deep in the prostate and it not be detected in the urine. He told me that there are certain antibiotics that have higher absorption rates than others. He prescribed me 6 weeks of levofloxacin (500mg once a day). He said levofloxacin is a strong antibiotic that has some of the highest absorption rates into the prostate. I'm on week two and a half now and I have to say I am definitely seeing an improvement. My pain on a daily basis was about a 4 or 5. Couldn't walk on some days with pants on because it hurt so much. My pain now is about a 1. Also he told me it wouldn't hurt to ejaculate occasionally to clear the prostate out. Before, if I ejaculated my penis would hurt more for a day or two afterwards. After being on Levofloxacin two and a half weeks it doesn't hurt after ejaculating. I'm hoping a few more weeks of Levofloxacin and I'll be back to 100%.

The first week on Levofloxacin I ejaculated and it did still hurt, but the doctor told me to take AZO's urinary relief tablets after ejaculating and see if that helps. I'd take it for 2 days afterwards and it did help.

So I'm not saying this will work for everyone, but if you haven't tried Levofloxacin and your issues started from a previous UTI or prostate infection you may want to try it.

Good luck everyone.

ChronicPain1 profile image
ChronicPain1 in reply to dougo1807

Doug, this is great news you're sharing! It's terrific that you're down to a pain level of 1. I look forward to you posting again and letting us know how you progress!

ChronicPain1 profile image
ChronicPain1 in reply to dougo1807

Was the pain inside the head of your penis? Or was the pain on the skin of the head of the penis?

dougo1807 profile image
dougo1807 in reply to ChronicPain1

The tip and the head of the penis hurt. The tip was red and the rest of the head looked pretty normal but if anything touched the head it would be painful. I think my urethra was inflamed because of the infection in the prostate which caused the whole head to hurt because all the nerves in the penis go all the way back into the urethra. At least a urologist told me something along those lines when this first started.

Update: I will note that I have held off on ejaculating. My pain continued to get better but after ejaculating 4 times in a week I think I may have overdid it. I started to have some pain increase again. I stopped and the pain went away. I think I cleared the prostate out enough... I'm going to finish up the antibiotics without ejaculating, but so far feeling much better than before since taking levofloxacin. I have about 2 and a half weeks left.

ChronicPain1 profile image
ChronicPain1 in reply to dougo1807

So the tip was red because of the underlying prostate infection. This is different than you having a penis skin problem. My problem has nothing to do with the tip or the head. It's the skin on the shaft and nothing to do with infections.

dougo1807 profile image
dougo1807

UPDATE

Well the levofloxacin was doing good. I was down to about a 1 on the pain scale. Today though the pain is about a 5 or 6. Has anyone tried a steroid to reduce the inflammation of the urethra? I was reading about auto immune diseases out there. I'm wondering if maybe after the infection the immune system is attacking the urethra. Doesn't make since how there is no infection yet inflammation.

wbeaman profile image
wbeaman in reply to dougo1807

lots of things cause inflammation without infection. Injury, nerve issues, autoimmune issues ect.

OhHey profile image
OhHey in reply to dougo1807

Any updates?

dougo1807 profile image
dougo1807 in reply to OhHey

I had an advanced bacteria test done on my prostate fluid. No infection was found. So they have deemed it chronic prostatitis caused by a previous prostate infection. I took gabapentin for a while and I think that helped with the pain a bit but the pain is definitely still there. I stopped taking the gabapentin because it was giving me bad acne though. Right now I'm not on anything. Pain has improved but is still there. About a 3 on a scale of 10. The gabapentin may be something worth trying though.

OhHey profile image
OhHey in reply to dougo1807

Can I ask what your initial pain threshold was at, as you mentioned it was a 3 now? Curious to know how you developed prostatitis. Normally it requires reversal of urine via kegel recess during urination, like to stall the stream, or incontinence. Any previous issues or occurrences of this?

dougo1807 profile image
dougo1807 in reply to OhHey

My pain level back when it first started was about a 7 out of 10. It hurt to walk. I didn't want to leave the house, but I had to go to work. I had a UTI that I caught from my wife that spread to my prostate and became acute prostatitis. But the doctors believed after the infection was killed off from the many rounds of antibiotics I had taken, chronic prostatitis remained as a result from my past acute prostatitis.

davches profile image
davches

Hi everyone,

For the past 5 months I’ve been suffering with:

• Constant penis tip tingling & irritation (more on left side, left dorsal nerve) - worst symptom

•Urge to urinate sensation (likely mimicked by the penis tip tingling as it doesn’t feel like a bladder related urge)

• Later on down the road, penis pain after sex and painful erections (pain comes and goes, unlike the highly discomfortable penis tip tingling which hasn’t gone away)

• Strange sensatations in penis (I.e feeling a cold type of pain and loss of feeling) - this comes and goes

• Red penis tip, can often look like there’s a purple bump on the left side (changes throughout the day)

I’ve gone through all the conventional urological tests, STD checks, prostate checks and had an internal pelvic muscle exam - nothing. Taken antibiotics - not one iota of relief. Prostatitis has been ruled out.

Now being referred on to a neurologist for checks, as it’s likely nerve related (as ‘tingling’ relates to nerve issues). It’s possibly pudendal nerve entrapment or Neuralgia as the dorsal nerve that tingles branches off from the PN and could be the main culprit.

Does anyone else share the same/close-similar symptoms to me? Especially the penis tip tingling?

I’ve done quite a bit of deep research into this and have some avenues left to take (and are currently taking), which could provide hope.

shaq07 profile image
shaq07 in reply to davches

Hi Dave. Did your std test include herpes?

Shannonr35 profile image
Shannonr35

My Dad is experiencing frequent urination and burning and pain in penis he was semi paralyzed from a back surgery in 2012 he has a neurogenic bladder and bowel but his frequent urination feeling and pain and burning is penis all started after a bad UTI and kidney infection but he says it feeling like hot coals in his penis

shaq07 profile image
shaq07

Hi guys. Just wanted to add that i have been having the same issues for around 8 months now. Timeline -

- met a girl off the internet and recieved a body to body massage. No insertion but there was alot of genital rubbing. Frottage i think they call it.

- exactly a week later i was on the sofa at a mates house just relaxing and started getting testicle pain. Couple of days later i went to a walk in clinic (uk) and he said i possibly have epididymitis as it seems tender. Prescribed me cipro and told me to hand in urine test to my gp.

- week later, i hadnt been taking the tablets as i reserached it and alot of reviews were negative, handed in urine sample to gp and they said it was all normal.

- was still only getting testicle pain a few weeks later til i started getting irritation in the penis and i saw white dots coming out of the hole. I went back to docs and sent me to std clinic. After checking urine and doing a swab the nurse said there seems to be something there so gave me a course of doxy and said ring back up on future for my results. 2 weeks later rang up and they said everything was clear. The doxy hadnt improved my symptoms amd neither had the cipro which i had before then.

- months since my exposure now. Testicle pain wasnt as bad but it was more my penis. Irritation and redness, seemed sore and weak. And the odd twinge like pain.

- Reffered to urologist who checked my prostate and said it seemed fine. Urine and semen test came back normal.

- so 8 months on my doc said the irritation could be thrush from the courses of antibiotics and the pain could be guilt stress as im married

To this day i still get the odd itch pain twinge. When i masturbate which is rarely it sometimes aggravates it but not all thw time. I can see changes in the penis with its colour and last time i masturbated i got what i believe is called lympohcele and i have never had that before. Penis seems slightly curved to one side.

Have any of u ruled herpes out? Its the only thing i can think of and i know it gives atypical symptoms alot of the time. I have been holding out having sex with my wife as i dont want to infect her. Have any of u been havinf regular sex with a partner? Have they had any symptoms since?

BruceLeethal profile image
BruceLeethal

Hello everyone,

First of all sorry for my english i'm 31yrs old and i'm from Italy, and i will try to write it down at my best.

My problem is mainly a CPPS case, going on from 2 years,started after having occasional sex with a random girl, causing disconfort while sitting in the perineal area, testiculars pain, and some times similar disconfort at the side of my penis.Recently i had some similiar patters with most of the stories i read here.

I won't write down a wall of text about 2 years of my life, i will just give you my 2 cents of stuff that i didn't read in others post, that helped me kind of.

The first thing, is the uva-ursi or bearberry extract, i don't know how it exacly translate in english i just used google.

For me even if my problem seems mainly cause by nerves inflamation and my prostate is small and there aren't synthoms of infection, i still got prescibed the cipro for 10days back then and it did nothing.

then i tried the using uva-ursi extract, following the right dosage for 10 days, and it really reduced my disconforts and synthoms, expecially while i sit, in my pelvic area.

Another thing,the major one, I WONT SUGGEST YOU TO TRY, but that worked for me for the whole 2017, was about using cold water ONLY in my perineal area, on my groin area,testicles and penis for about 40sec, after a full body hot shower.

And i would use the same cold water procedure after i ejaculate, since usually i felt a kind of swelling in the perineal area after it, and the cold water, reduced/ totally took it away 5-10mins after using it.

BE VERY CAREFULL if u want to try the cold water thing, every one suggest you to use HOT water, but for me it dint' work at all, i think the cold water worked as a kind of anestetic for my nerves.

BUT back on February 2018 i had a flare up of my synthoms after a sexual intercourse, i used the bearberry extract again, and it worked the first 4 days,it was going away, and i was feeling really good. Sadly i eat some bad food and i had an intoxication with diarrhea and it basically inflamed a lot my perineal area. The bear berry worked for the next days, but some sort of nerves inflamation, separated from the prostate, builded up, leading some big disconforts/pain in perineal-penis area.

I tried with the COLD water, and it didnt work, istead it made my penis head and my anus wors with a painfull sensation for 10-20 min after i used the cold water. I think that's because the nerves inflamation was at his peak and made my penis by far more sensitive.

That's why i tell you to be very carefull while using cold water.

In my case i noticed is best to ejaculated every 48 hr, if i do it more often, my synthoms flares up same if i stay 4 or more days without ejaculating.

The Cold water really helped a lot before,i was able to ejaculate everyday and spent a lot of hrs staying sit again without so much disconfort. So i tough i had a good solution working for myself, sadly i have to find another solution.

After a couple years, i'm pretty sure the problem is in the nerves, aside of what the starting problem is. A prostate infection, may in some way cause an inflammation that with time can damage a different type of nerves close by, and basically you can feel pain on your penis,your testicles, on the pudendal tract,in your groin or your anus and perianal zone.

I will try some CBD oil without thc next days, in my country it's extremely expensive, i ordered a 15% ones, it cost 100€ for 10ml.

I saw some youtube videos where people with fibromyalgia and others types of neural pains, find a relief using this CBD oils.

Most specific,many people got good results using the charlotte's web advanced, it cost $149 for 30 ml..., but it's the one with most %.

I can't order it from italy... ,But if you are in the us... and u are going

through this miserable condition, please give it a try and see if you see any benefit with our type of problem.

After reading a lot of stuff arround, i read that the maryuana that is usually sold for smoking is very high on thc and low on cbd. so if smoking didnt do anything for you, still give that oil a try.

Jimmyjomps profile image
Jimmyjomps

So I have a very similar thing going on. About 4 months ago I received a blow job from a girl I didn't know, with a condom on. After 3 weeks after my penis started to feel sore, but not to bad. Also I noticed lumps that were UNDER the skin on the right and left side of my penis. SO a 2 months pass and I had an STD test which came back all negative, and my penis was sore but again not to bad. Then around 5 weeks ago I was masturbating, and my penis started to burn badly. The then noticed a small bump under my penis head on the shaft, on the left right near the really pleasurable area. It also had a small back and blue mark. Well all that week it burn bad all day, and it burned when I urinated. The next week I saw a Urologist and he felt my penis and said it looked healthy. He said my sugar was really high in my urine and I could have Pre-Diebaties. I'm working with my primary doctor on that now, but I will say that over these last five weeks I've been eating extremely healthy and been keeping my blood sugar in a decent area and my last urine test taken yesterday came back with no sugar in the urine. Anyway back to the story, the urologist gave me a week worth of Doxcy and Cipro. When I read the huge warning label on Cipro I decided not to take it, but I took the Doxcy About 2 weeks after wards I was feeling better, as long as I didn't touch the penis. If I touched it it burned, but if I left it alone it felt good.

Well yesterday I saw another Urologist, and again he checked my penis and felt around which caused a lot of pain. He said it looks healthy, but he testing me for herpies. He also tried to prescribe me Cipro but I told him I didn't want to take it, so he switched it to something else. I don't remember what it is, but when I pick it up today, I'll check it out.

He said that he really doesn't know what it could be. He thinks it could be prostatitis.

Now today it burns like crazy because of all of the touching yesterday. It's like it's ALWAYS sore. If I touch that spot where it really started to burn five weeks ago, it really starts to burn which makes it very difficult that I can't even masturbate. The burning starts in that area then goes around the entire circle of the shaft. Then my pee hole becomes super sensitive, which leads to burning going dow into my left foot.(Sometimes right) Like when you ejaculate you feel good feelings in your feet, well it's those nerves I feel that flare up. I just have no clue what to do. It makes me sad because I can't even masturbate.

The burning kind of feels like my dick is on fire, but not screaming pain, but very uncomfortable pain. If I touch it it get so much worse. So after reading everybody's post, how do you guys masturbate if it's painful? Many of you said it's painful when underwear rubs against it, so how do you have sex and masturbate?

shaq07 profile image
shaq07 in reply to Jimmyjomps

I havent had sex since i started with the symptoms as i dont want to infect my wife. I really want to get a herpes but its so difficult in the uk without blisters.

Have your herpes results come back?

Jimmyjomps profile image
Jimmyjomps in reply to shaq07

No not yet. I should have them by next week.

shaq07 profile image
shaq07 in reply to Jimmyjomps

Hi jimmy. What did your test results reveal

Hey guys, new on this post but not to the penis tip pain. I have read almost this whole thread and wanted to briefly share my experience with this pain. I am 58 years old and the penis pain started in 2008 like a lightning bolt hit me. I remember it like yesterday. I was in the urinal and all of a sudden the pain from urinating became unbearable. After that the pain never stopped. It was incapacitating every waken moment. The journey began to find some relief. I went to many urologists, proctologists,neurologists,chiropractor, and they performed every test and scan and probed every orifice in my body. They found nothing. I was in unimaginable pain day and night. Sometimes after taking narcotics to fall asleep I would wake up in the morning and try to pretend to myself I was still sleeping! Once I moved an inch the pain would come back with a vengeance. I was prescribed every medication on this thread and more. None of them even made it more tolerable. No one was able to determine the cause of the pain over a period of two years of relentless testing and research on my own trying to find some relief. One urologist went so far to tell me it was all in my mind and most gave up on me. Told me there was nothing more anyone could do or try to help me. I was sent to a pain management clinic weekly where they dispensed serious painkillers. I was given everything from Tramadol, Vicodin, Hydrocone, etc. and later even Morphine. Not one of these pain killers even brought down my pain level at all. Obviously, this whole nightmare took its toll on my family and wife of 28 years at that time. I missed out on two years of watching my daughter grow up and never attended any family event and eventually even lost my job due to abscence. This caused a further downhill spiral due to doctor bills and no more health insurance. I was contemplating suicide.

After extensive reasearching online (full time since now I was enemployed) I found an article pertaining to this penis pain. It was an article about how Diazepam (Valium) resolved this for a few people. This is not a painkiller but the pain management center was more than happy to dispense 5mg three times a day. Said it was worth a try and better then all the painkillers they gave me and the side effects of severe constipation. In one day the pain was totally gone!! I was skeptical that it would come back but kept taking them as prescribed and it didn’t come back. I took Diazepam for two years and eventually got over the drowsiness it caused. I started tapering the dosage down after that to two and then one and them none per day for about a year. I always had them on hand because I am an extremely high anxiety person and it was a security blanket to me. I took one when needed for anxiety and stress and the pain never came back..

Fast forward six years....the pain came back a week ago. Nothing unusual happened physically. I am under a lot of stress and still trying to recover from the financial nightmare this caused 8 years ago and now finally going to lose my house. I started back on the diazepam and it takes down my pain level where it barely tolerable but better than nothing. Hopefully I can get it under control again soon.

I am sorry for the book I just wrote instead of being brief as I said in the beginning. For those of you who are at your wits end. Maybe this can help you as well. Best to you all that silently suffer.

Dgm5186 profile image
Dgm5186 in reply to

Why can nobody figure this out!!! There has to be something causing such intense pain! Have you had an MRI of your sacral spine? Look for Tarlov Cysts or other disorders of the nerves? It’s definitely something!

shaq07 profile image
shaq07

Can you add images on here? I have now got a pimple on my bum cheek that has been there for weeks and wont go away. I think its herpes

dougo1807 profile image
dougo1807

Has anyone tried Diazepam like the one guy above said he tried? I've been trying to get my doctor to give me it but he wants me to take gabapentin instead which hasn't really been helping and it has also given me bad acne.

warrior7 profile image
warrior7 in reply to dougo1807

How have you been are you still in pain?

dougo1807 profile image
dougo1807 in reply to warrior7

Actually my pain has slowly been going away. It's been 2 years now since the pain first started. It's definitely improved but it's not 100%. Great thing is I can actually have sex again and not be in enormous amounts of pain the next day. I took 1050mg of Turmeric and 500mg of Bromelain every day for a couple weeks and that seemed to give some relief. Now i just take that dose after sex to help make sure I'm not in a ton of pain the next day. But all in all good news is it's gotten a lot better. I think time just really healed it. Slowly mind you, but it has gotten better. One thing that I think extended my pain and made it worse was having a cystoscopy about a year ago while the pain was only a year old and still very present. I think if I hadn't had the cystoscopy my pain might have gotten better sooner.

wbeaman profile image
wbeaman in reply to dougo1807

tried Diazpam - didn't help much.

Superhoon454 profile image
Superhoon454

Omg, I just stumbled across this and believe I have the same condition. I too have urethral pain which came about after sexual intercourse and have been suffering now for almost 10 months.

(Although in my instance there was no discharge and I must stress there were brief earlier instances of pain which were vaguely diagnosed as prostatitis)

After running around like a headless chook getting blood and urine tests done (which came back Negative) I eventually presented to an emergency department who informed me I most likely had Gonorhea and/or chlamydia and after more blood and urine samples (which also came back negative) was administered ceftrexiaone and azythromycin with a follow up tablet to be taken in a week. Almost overnight the pain disappeared only to return a week or so later. So I went back to the emergency department, who this time told me I had HSV and possibly HIV. Again bloods and swabs were taken and again results were negative. So after a 3rd visit I was informed I had a "pain condition" and needed to see a urologist. 2 Urologists (who were very thorough) and an MRI later I was given Augmentin duo forte and later Ciprofloxacin. Both of which worked to remove the pain completely at first, but only for a few weeks at a time, then in diminishing time frames before not really working much at all. Along the way I have also been given lyrica, mertazapene (fuckin evil) do not try!!!!!

And of course a heap of panadeine.

I am now in the care of a specialist pain clinic in Melbourne, who have put me on gabapentin. At first this worked but I am on increasing doses and at the moment the pain has returned. I began on 300mg a day then 6 then 9 then 1200 now I'm at 1800mg in just over a month and it doesn't really work so I am having to resort to things like Emla gel.

The only other variables I can think of are that I am an on again/off again smoker. And work as a mechanic so am constantly in and out of cars, I have noticed a difference in pain levels when I am seated however if Im not in pain at the time it makes no difference. Has anyone had any benefit from pelvic floor exercises ? Btw how do you do them ?

Has anyone made any progress with this?

Mike0425 profile image
Mike0425

Hi all,

Just wanted to share my situation... Very similar to a lot of the people's on here. I am currently 29 years old. This issue first started about 3 years ago, I was traveling Europe for several months. One night I received oral sex, and the next morning I had a sore with a lot of pain on the side of my penis. The sore went away, but the burning pain remained. On this trip I was on a boat for long periods of time, so I had to get a box of bandages to cover the area with the pain on my penis, because it was so painful to walk in swim shorts.

I made it home and tested negative for all STDs. I saw a dermotologist, and he said it didn't look like anything and to use Aquafore on it. It didn't work. Then Lomotrine Anti-Fungal, which also didn't work. I did some research online and bought Man1Oil and thought that would help, and it make it drastically, drastically, worse. I saw another dermotologist who prescribed me Elidel cream and Ciclopirox Olamine .77%. I used both for several weeks and it went away 80%-90%. Fast forward several years, the pain still lingered, but only on a tiny tip of my penile head. I could never run or have sex or any other chaffing without being in a lot of pain for several days afterwards, but it was manageable for a while. I tried using Aquafore to hopefully get rid of it completely, and that seemed to make it come back as worse as before. I went back to the dermotologist and got new prescriptions for Elidel cream and Ciclopirox Olamine .77%, and used them for over a month and they didn't do anything. It's been almost a year now, and it hasn't gone away. Even the most comfortable underwear is painful, every step I take. I've been wrapping my penis is gauze bandage wrap and taping it, several times daily, which allows me to walk, etc.

I went to a new dermotologist who specializes in unique issues like this, and said he knew what it was. I have been alternating between different dosages and combinations of Gabepentin, Amtryptolien and Doxepin 5% cream over the past 3 months. Nothing has worked. I have another appointment with him at the end of the month, hopefully there are other solutions.

One more thing to add-- I do have a condition called Pelvic Floor Dysfunction. This has caused me so much pain over the past year and a half and a have gone through so, so, much to get through it. I couldn't run, do exercise, sit for too long, stand for too long, have sex. My balls were just a constant pain/discomfort. Some doctors thought these two issues could be related, but didn't know for sure. I'm not even going to get into everything involved for this, I think I'm already way over my posting limit, haha. Luckily, I finally have overcome a majority of my Pelvic Floor pain/issues, but this skin/nerve pain is still here.

I will update with any developments if I think they would be helpful, I would appreciate anyone else to do the same.

Thanks dudes for all your input, and I wish everyone happy recovery. :D

Dgm5186 profile image
Dgm5186 in reply to Mike0425

Hey man, I’d be interested in talking more or hearing more about your story. Are you still active on here?

Mike0425 profile image
Mike0425 in reply to Dgm5186

Hi! I am. Feel free to shoot me a chat message

ChronicPain1 profile image
ChronicPain1 in reply to Mike0425

MIke, what other pelvic floor problems have you had? Any pain when sitting?

Dgm5186 profile image
Dgm5186

Hey everyone, is anyone still active on this post? I know some people have had lumbar MRIs. I had one and the neurologist said they found an “incidental finding” of a Tarlov Cyst at S2 on my spine. These are much more common in females and can cause major pain issues when they compress the nerve roots. A lot of doctors brush them off and say they dont cause issues. If you’ve had an MRI, get the actual report from the doctor and see if they found any Tarlov Cyst. Do some googling on them... I think they may be what’s causing or problem. Please report back.

in reply to Dgm5186

Would they show up on an X-ray?

Dgm5186 profile image
Dgm5186 in reply to

They would possibly. The tried and true method is for a sacral/lumbar MRI. I really feel like this could be something causing our issues. Would be nice if anyone followed up with their findings.

Painaway13 profile image
Painaway13

Similar story, 8 months ago penis tip pain. Was prescribed fungal creams then bactrim and cipro then doxy and then physio. Physio has seemed to helped the most with controlling things but pain is still there. I find that sitting makes it worse and i am ok with sex and masturbation as long as its not for too long. I am currently trying massage therapy and waiting for an appointment at the hospital pain clinic.

As a side not i suffered from tmj disorder for about 5 years. I thought i learned to deal with chronic pain after that but seems like i overestimated myself. That was a lot worse than the penis pain but i have learned that any chronic pain effects brain similarly and ultimately changes your life. Leaves you more isolated and less willing to do things. Suicide crosses all of our minds. I have learned that being very social and excercising regularly helps in general even if it can aggravate the penis pain sometimes. Not thinking about the pain and doing anything that helps is also necessary.

After reading this thread i will be trying to get the pain free book. Anyone had any luck with that book? I am also currently trying massage therapy due to the fact that i also have had chronic back pain. The penis pain is much worse though.

The reason that i wrote all this is because i have found something that helps but doesnt cure our issue. If you have penis tip pain like me i initially tried soft underwear which helped the sensitivity and also being naked seemed to help a lot. So i looked for soft material to wear for the penis. After a suggestion from my physio i stumbled on this: manhoodcanada.com. although the pain is still there (especially when sitting) it is greatly reduced and i can lead more of a normal life. Would love to hear what everyone else has to say :)

Thanks and good luck everyone. Will try to keep everyone updated on my pain clinic and massage therapy. May also try psychotherapy eventually

OhHey profile image
OhHey in reply to Painaway13

The pain in your penis could be due to some sort of nerve entrapment. The penis is acting as either a trigger or a deferred pain sensation. What's your age?

Painaway13 profile image
Painaway13 in reply to OhHey

I have been having some relief with excessive pelvic floor muscle relaxation, massages and physio. Although the pain is still there when i touch the tip. Im wondering if its genital dysaesthesia or some sort of nerve entrapment?

michbertabs profile image
michbertabs

This is the only thing I've found on the internet that comes close to describing what I have. started about 2 weeks ago. my girlfriend was away for a week so I was masturbating quite a lot. Also, a few weeks before I had pinched my penis somehow while sleeping, rolling over on an erection. it started feeling irritated for a day or two, then i had sex with her. no noticeable effect but the irritation just kept increasing and for the past two weeks I've had a ton of irritation and some pain/discomfort on the tip of my penis, which also is red sometimes. huge problem with underwear and it brushing up against it. more frequent urination, and sometimes it takes another second or two to keep going. seen 2 urologists and an urgent care doctor in the last two weeks. prescribed doxy. on day 7, no help. i did see a urologist a few days ago who checked my prostrate and gave me a shot of antibiotics in the butt cheek, and that seemed to have helped. but today it's back full force. i haven't ejaculated in two weeks. I'm really scared and don't know what to do.

in reply to michbertabs

Same thing happens here... it could be a skin condition or allergy. My doc is putting me on kenolog, we will see if that helps. Have you ruled out jock itch, stds?

ChronicPain1 profile image
ChronicPain1 in reply to

Be careful of anything like kenalog because it is a corticosteroid and will thin out your skin. You don't want penis skin getting thinned out!

in reply to ChronicPain1

Have you tested for Lymes?

in reply to ChronicPain1

I stopped the kenolog; did little for me but irriate the skin. It seems avoiding masturbation helps considerably. I have ruled out STI's a long time ago. I can only think it's nerve damage (pudendal neuralgia), fungal infection, parasite, or skin condition.

ChronicPain1 profile image
ChronicPain1 in reply to

I found that avoiding masterbation helps a lot unless i use a lot of lube and get to ejaculation quickly. Even then, I have to wash the lube off and the soap can irritate.

ChronicPain1 profile image
ChronicPain1 in reply to michbertabs

Is your pain only on the head of the penis? What about the shaft - does that hurt when it rubs against underwear?

michbertabs profile image
michbertabs in reply to ChronicPain1

only thing that hurts for me is the tip. it went away for a bit, but I'm again away from my gf and have masturbated a few times the last week and now it appears to be back.

OhHey profile image
OhHey in reply to michbertabs

On a scale of 1-10 what's the pain threshold at? 10 being a stabbing pain you can't leave the bed for, and one being a dull ache or pinch.

ChronicPain1 profile image
ChronicPain1 in reply to OhHey

Mine is a burning pain like a sunburn, and when I walk my underwear feels like sandpaper rubbing against it.

OhHey profile image
OhHey in reply to ChronicPain1

could be a fungal infection

ChronicPain1 profile image
ChronicPain1 in reply to OhHey

I've been to several doctors about this. None of them said it was a fungus.

OhHey profile image
OhHey in reply to ChronicPain1

Is there a noticeable redness, maybe dry, flaky skin? If so... better fungus or eczema

ChronicPain1 profile image
ChronicPain1 in reply to OhHey

nothing noticeably different! That's part of the frustration.... and mystery.

OhHey profile image
OhHey in reply to ChronicPain1

Any other pains in the general area besides the penis? Seems like there'd have to be some nerve issues. When erect, is there still pain?

ChronicPain1 profile image
ChronicPain1 in reply to OhHey

Erect: no pain! I do have a general pelvic pain issue and pain with sitting. However, my penis pain is 100% skin related. It's Genital Dysaesthesia in my case

warrior7 profile image
warrior7 in reply to ChronicPain1

I think wer in the same situation, its been 6 mos for suffering have ylu heard about tje diuretic anti inflamatory pill?

ChronicPain1 profile image
ChronicPain1 in reply to warrior7

Have not heard about the diuretic anti inflamtory pill. What is that?

warrior7 profile image
warrior7

Been reading your stories here and i feel the same penile pain but its too painful it feels like a pinch or it stings, antibiotic didnt work.. checked on diffrent urologist but nothing changed.. have anyone heard about diuretic anti inflamatory pill? I saw some feedbacks from those people who are suffering the same condition with us ang got relief from this herb, im looking forward to give this a try.. anyone have tried this?

wbeaman profile image
wbeaman in reply to warrior7

That pill is a scam.

warrior7 profile image
warrior7 in reply to wbeaman

Have you tried it?

wbeaman profile image
wbeaman in reply to warrior7

Nope, but it's a well known scam. They spam Reddit and health forums constantly. You can find a warning about it stickied to the Prostatitis Reddit page. Don't waste your time or money.

in reply to wbeaman

I suffer the same pains on and off for almost a year now. I am starting to wonder if it's related to some sort of food allergy; everything else checks out fine - I can't explain the pain/heat/itchiness I feel in my entire groin area and penis.

shaq07 profile image
shaq07 in reply to

Did it come on after a sexual encounter Dan?

Pieter21 profile image
Pieter21

I have basically the same issues. Penis tip pain, some discharge, more pain after ejaculation. I have been tested for all stds, all negative. Have been for 2 cystoscopes, all normal. I am on lyrica (300mg/d) and tamsulosin 0.4, little improvement. Not sure how to beat this thing.

Dgm5186 profile image
Dgm5186 in reply to Pieter21

Can you provide more details about what led up to this starting? Sexual history, all tests done, ect.? We have to work together to narrow down the commonality between all of us.

Mike0425 profile image
Mike0425

Hi all,

I have had Pelvic Floor Dysfunction for several years now. It has taken me a long time to figure our what my condition was / get on my road to recovery. I have been having similar issues with a burning and nerve sensitivity pain in my penis (as well as some other symptoms) for over a year now, and have done so many different things and have tried so many perscriptions, etc, but nothing had worked. I have to wrap my penis in gauze every day, in order to be able to even walk.

I did a lot of research, and came across this book—Pelvic Pain Explained: What You Need to Know by Stephanie A. Prendergast and Elizabeth H. Akincilar. I would strongly advise reading it. It is a very comprehensive book that educates and describes every aspect of Pelvic Floor Dysfunction for men and women.

It includes stories from different people with the condition, which helps exemplify the complexity of the condition. It also outlines the steps you can take to get to recovery and includes a ton of resources. Just reading this will likely put you a little more at ease by calming you through understanding the condition. I wish I had found this book before going to dozens of specialists and wasting thousands of dollars trying to figure out what / how to fix my pelvic floor dysfunction.

I read through and discovered that this specific symptom seems to be linked to “loose connective tissue” restriction, putting pressure on my nerves (in my case, in my legs).

The book showed me how to find a proper physical therapist tp help me. Just after several sessions with her (as well as muscle rolling, cupping on my own), I am starting to see some noticeable improvement. I am able to walk some days without wrapping my penis is gauze, which is pretty amazing for me. I am confident that after several more weeks, I will be able to significantly improve with this symptom (as well as my other ones).

Takeaway from my long post— read Pelvic Pain Explained, and find a good physical therapist to help you get started on your recovery.

Good luck everyone, and I’m happy to answer any questions you may have!

Dgm5186 profile image
Dgm5186 in reply to Mike0425

Hi there Mike. Glad it sounds like you’re on the road to recovery. How did all of this start for you? At least what triggering event started your penis pain issues? How did the pain start? Gradual or all of a sudden? Sexual history including testing for STDs (including HSV1 and 2), testing done thus far? Have you considered getting a lower lumbar/sacral MRI? I have a strong feeling tarlov cysts may be the cause of some of our issues. These have been implicated in vulvodynja that happens which is the female equivalent of our issue. These also are under reported and routinely stated as not a cause of pain or dysfunction which is false.

Dgm5186 profile image
Dgm5186

Anybody have any success? Update posts are always helpful to see how all of you are getting along. I’m so sick of dealing with this! It’s ruining my life!

cotto007 profile image
cotto007

Going through this 3 years now. Seen countless doctors, had 2 MRI of pelvis, every antibiotic, physio T, creams, you name it I have been on it. My symptoms are:

Pain in perineum area when sitting down

Cold ( ice cold ) penis and testicles worse when seated

tingling/prickling on skin of penis, tip of penis and around buttocks and back of upper legs

Wet sticky feeling on penis skin ( only on one side and the area is red )

Ice cold feet, even when its not cold in my home with heating on

Erection problems and loss of sex drive

Anxiety and feeling of hopelessness

Bowel problems - loose stools that burn, also roasting farts

Red blotches on face after ejaculation or bowel movement

Sleep problems ( keep waking up through night )

Penis when deflating from erection is an odd shape ( bit curved but noticeable to me )

Penis when soft feels like its hollow inside and the tip a bit red

These symptoms come and go indicating something that isn't permanent. When waking everything seems fine then kicks in once I'm up and about or really increase upon sitting, especially leaning forward.

I have narrowed this down to either PN which my physio has said, or entrapment, but my MRI has shown no entrapment. Another possible cause is a disk problem in lower spine.

I don't believe this is any STD or herps, I've been tested and all clear 3 times, plus I have come across young virgins with this problem on other sites without sexual contact.

Another possible cause is chronic inflammation somewhere in the tubes,uretha or prostate but again apparently mine was fine on testing.

My next plan of attack is seeing a chiropractor and getting my lower spine checked out.

This is horrific and hard to live a half decent life, especially when no one knows what is going on or what to do. The thing is people who post disappear and its the same across all sites I visit, you read to the end and there isn't an answer.

Forgot to mention I have done a lot of bloods and hormones, thyroid etc are fine.

29292929 profile image
29292929 in reply to cotto007

Hey mate,

I’m dealing with a similar issue, it’s been ongoing for 9 or so months now. Started as testicle pain (left side only) then a sharp pain in the glans of the penis. The pain has gradually shifted around the general vicinity of the head of the penis and the base.

I have had many tests done with everything coming back negative. I have seen two urologists, a derm, had multiple scans done - and no results back to indicate an infection or anything somewhat obvious.

I have been seeing a physio who specialises in the pudenal nerve and treating it and I see mild results however likewise to you, the pain might go for a day but then it will sure enough come back. I also have no pain upon waking and then either shortly after getting up and moving around the pain will resurface gradually over the course of the day/into the evening.

3 years is a long time to deal with this and I emphathise with you greatly, living with this is certainly a constant battle and depression and anxiety are often residual symptoms due to the constant stress the body is under. I will not stop looking for a solution and when I do I will update this thread. Feel free to drop me a PM if you want any further details to assist in your research and recovery.

All the best.

CPPS_sucks profile image
CPPS_sucks

Hey everyone I just wanna say I’m really happy I found this thread I’ve been searching for someone that has the same issue as I do and I’m relieved to know I’m not the only one suffering from this issue. I have similar issues as everyone else, testicle pain, penis irritation, perennial pain. I have irritation on my glands that’s worsened by underwear. Tons of antibiotics, went to 6 different doctors, 2 urologist, and a derm. All of them didn’t see anything wrong and said it was all in my head. All std test negative, after my most recent urologist told me I could have sex with my wife I’ve been having frequent sex without a Condom for over a month and she hasn’t had any symptoms so I’m assuming it’s not an std. I’m going to physical therapy and it’s helping with the testicle pain but the penis tip irritation hasn’t subsided. It feels like sandpaper as was mentioned. If anyone has any other advice I’d love to hear it and also just know you guys are not alone we are in this together.

PPiTT profile image
PPiTT

So I've been suffering from a similar problem for over 20 months now. The area is continually sensitive and painful to touch or put pressure on, and has never once subsided in intensity. It is a burning type of pain and the source seems to be just inside the urethra (roughly 1.5 cm), and I mainly feel it on the left side of the penis head. The skin on the left-front side of the head and around the meatus is hyper sensitive to touch to the point that even lightly touching the skin in this area is painful.

It started when a rash formed on the foreskin (I'm uncircumcised) and the head of the penis (I was not sexually active at the time). I went to the doctor and he thought it was balanitis. He gave me some anti-fungal medication but it got worse over the next week with little reddish sores forming. It was painful where the rash was but also inside the urethra. I went back and then he thought it may be herpes. He did a swab test, and gave me acyclovir. Another week passed and still no improvement. The herpes test was negative. After 3 weeks of no improvement I went to a dermotologist and he wasn't sure either, but suggested using some cream for dry skin. After a few days of using it the skin healed and was fine again - however, the pain in the urethra was still there, and hasn't left.

I've seen two urologists and also had a cystoscopy with the first one. All basic urine tests are negative for bacteria, and nothing came back from the cystoscopy in regards to the bladder. The first urologist just did the cystoscopy, and after the results seemed out of ideas. He suggested a MRI scan, but the cost is prohibitive. I therefore saw a second urologist who was even more useless. After a 10 minute session of her checking my urine and prostate and a quick visual examination, and hearing that nothing came from the cystoscopy with the previous urologist, she said she didn't know what it was, so it's likely that it's in my head and I should see a psychologist. I'm not opposed to the idea, but I can't understand how she can come to the conclusion that it's not a physiological cause in 10 minutes with only the most basic tests done. Also, if I get soap into the urethra it causes it to burn, and if I drink a strong alcohol like Vodka, when I pee afterwards it irritates it and makes the area more sensitive and painful (I stopped drinking for 6 weeks, and it helped a little in reducing the skin sensitivity, but the intense pain was always there if I applied pressure to the penis head). Seems really odd that if it was caused due to stress or similar that these things would irritate it. Also, stress or lack therefore has no affect - the pain doesn't change in intensity based on my mental state.

It's worth mentioning I've tried changing my soap, washing detergent, fabric softener to sensitive products in case it's the cause, and also I generally don't use soap on the penis head to avoid irritation, but this has had little affect if anything at all.

I've also thought about it being a nerve issue, but again, based on the irritants above, that seems unlikely. I do ride an exercise bike often, but I stopped riding for a few weeks and there was no difference. Also, sitting for long periods makes no difference and doesn't make the pain worse. I don't have pain anywhere else other than in the tip of the penis.

I did a full blood works a few months ago, and it came back negative for everything except HSV-1 (have anti-bodies, but it's not active in the system), however, I have had a cold sore on my mouth before, so this isn't that helpful. The only thing I can think of is that the initial cause was HSV-1 (maybe it was dormant for a long time), and that has caused some kind of infection or nerve damage that's not going away.

I'm really out of ideas, and the limited knowledge and willingness to help by urologists is incredibly disappointing - the only thing they want to do is cystoscopy's, and their knowledge outside of that is extremely limited. I'm thinking of maybe doing an MRI, but not sure whether that will show anything, and just end up being a massive expense (medical aid doesn't cover it).

So will be watching this thread to see what things to try.

Maxchoe profile image
Maxchoe

Hey, have very similar symptoms to you guys. I had sex with my girlfriend and few days later got severe stinging in my meatus 1.5 cm down. It was horrible. This is not the first time, 2 years prior I had sex with this girl and got the same pain. Took me a month to go to the doctor. Had an infection took 4 pills and it was gone. Now 2 years later slept with my girlfriend and got the pain. Constant burning. Went to the doctor got tested. Everything was okay he still gave me 4 pills of azithromycin and it was gone. Small infection maybe. 2 weeks later came back and for the next 6 months the pain was horrendous. Couldn't sleep, eat or think. Went to 8 doctors 2 urologist, did all test, prostate exam and cystoscopy. Nothing could be found. I been through all type of medication ( azithromycin, cipro, levaquin Lomax. I was in so much pain doctor were giving me everything. Nothing helped. Pain felt like a stabbing, burning going from my left side to my right of my urethra I also had pain in my dorsal nerve. Like throbbing in my penis shaft. Reading some of the post here. I have had lower back pain for years. My l5 spine is compressed causing me to have sytica. Got multiple cortisone shots. I was getting dorsal and toe stabbing pain at the same time. Like it would throb at the same time. The pain would switch over from urethra to the shaft. It did this for next 6 months at pain level of 10. It now has been 14 months and I still get pain. There is times where pain goes away for a few weeks but eventually returns. The throbbing has stopped but burning still occurs. In my case the penis doesn't feel irritated or sensitive. Its just burning. I do see some white small patches in my shaft. Did some research and it very most likely my nerve is damaged and is not supplying proper blood. Been to a pelvic floor specialist and it was kinds nice to hear why this happens. But she really didn't help. Some of the things I do to help me are hot yoga, baths, supplements such as cranberry, flower extract, vit c d b. Book headache in the pelvic. Smoke damn cigarettes. Pain is alot better. There is times I dont feel it anymore. Alcohol kills me. I drink I feel great next morning burns the urethra. Honestly to stay positive about this is hard. This has broken me down and I think I'm a very mentally strong person but when you sit there and are in pain and realize no one can help you. It's hard not to freak out. The book I recommended is great. Finger your ass and release pelvic floor muscles. I wish I was kidding. Sorry my story was everywhere. End of the day you cant do shit about it. Stay healthy and live through the pain. Your body will just get used to it. I believe it eventually will go away. It sucks when your 27 and going through this. Oh buy panadol and azo standard helps numb urethra. Ask me questions I'll try to help.

Finnfm_qp profile image
Finnfm_qp

Hi there, I’ve been having the same issues for a while with literally the exact same symptoms. I had chlamydia and got rid of it with antibiotics but the symptoms persisted and never have since gone away. Did you ever figure out what was wrong?

Maximus234332 profile image
Maximus234332 in reply to Finnfm_qp

Hey man your not alone. I was like you went away and then came back and now it's kinda stuck. Keep your head up. Try the supplements maxchoe recommended. I also just bought on amazon quercetin supplement. Read online that this helps to eliminate the pain in a week or so. I'll let you know how it goes. Try to get another around of antibiotics. If not your nerve is irritated or damaged start healing it. Stretching yoga hot baths . Massage pubic bone. Good luck. I noticed that it is getting better. Jt will take some time tho. It fucken sucks tho.

AlexTX profile image
AlexTX

How are you doing now? Just ran into this online and seem to be having exact same problem :(

Shadz00 profile image
Shadz00

Hey guys, I stumbled across this thread when searching online for any kind of answers. I’m feeling hopeless and alone as well and have read just about this entire thread and can definitely relate. I feel like I’m strong person but this has brought me to breaking point. Some days I wish I just wouldn’t wake up so I could escape the pain and anxiety I have.

I’m 36 and this all started back in 2012. My wife was pregnant with our first child and I had no issues prior to this. There wasn’t really much sexual activity until a few months after the birth. We went to startup again and all of a sudden I had pain in my penis and was bleeding. Of course i was freaked out and hoped it would just fix itself.

Finally went to a doctor and he said it looked like balanitis (I had white patches on head of penis). Went on oral antifungal and creams.

Basically i have been through everything like many of you. I’ve been on just about every cream out there. I’ve seen a few different doctors and two different urologists. Everyone feels useless to me. They just say it’s recurring balanitis.

I just saw another Urologist last month and he said I have adhesions where the skin adhered. I am circumcised but foreskin doesn’t really retract when I pull back. So he prescribed clotrimazole / bethamethasone for six weeks to see if the adhesions will break up. Otherwise he said he needs to cut them apart and circumcise me again to get rid of the bad/damaged areas. You can imagine the look on my face when he said this. He said it won’t be pleasant and I would have to be put under.

I just don’t understand why this is happening to me. It’s been over 7 years and I could feel ok for a few weeks then all of a sudden my penis tip will burn and feel irritated. I’ve been tested for all STDs and negative. PSA test was normal. Urine tests are negative.

I do have low back pain and have had for about ten years. Reading these comments I’m wondering if any correlation. I’m supposed to have a facet joint block in the next week or two. All of my back pain is in lumbar area.

I just started hemp CBd oil a month ago. I’ve been desperate for anything to help. It has helped my anxiety and mood but hasn’t really helped my pain.

I’m so over this as I’m sure all of you can relate too. I feel like rest of My life will be spent dealing with this. I would give anything to be normal again.

This isn’t really something I talk to people about. I suffer in silence and I’m so angry inside that I just blow up. I’m hoping to find some comfort by being able to talk about it with other guys experiencing the same thing.

If I find any solutions that help, i will be sure to share.

Maximus234332 profile image
Maximus234332 in reply to Shadz00

Hey man keep your head up. Yours sounds like more of a problem with your urethra and skin.Keep going to doctors. Try the surgery. It will eventually get better. It's just pain man. Research alot and begin healing your mind and body. Being sad and angry wont help. Trust me. I'm starting to feel way better. I also think your brain will make it worse than it actually is.

MEHWI123 profile image
MEHWI123

Hi,

I am by no means telling you to stop all your treatments and do this, but PLEASE TRY THIS

I am a female and have suffered with chronic pelvic pain and want to tell you something that can help with pain. Do be optimistic when trying it and do not underestimate the power of the mind. It is the practice of mindfulness, a specific book to be exact:

amazon.co.uk/Mindfulness-He...

Please try to USE THIS BOOK and follow what it says. It is very powerful. I hope it works for you

ginz4uuu profile image
ginz4uuu in reply to MEHWI123

Hi d link doesn't work

MEHWI123 profile image
MEHWI123 in reply to ginz4uuu

Hi, try this: amazon.co.uk/Mindfulness-He...

Antonio333 profile image
Antonio333

Hi so I’ve been on a couple of threads and I have been dealing with this for a little over a year. Please let me know how this all started for all of you guys. Mine started with a sexual encounter with a woman for the first time. The next day the burning started in the left part of my glans. It has stayed steady for the year and I got back with my girlfriend of a longtime afterwards being told it’s not contagious but it seems like this is something sexually related.

Anyone find a cure or something to help out? I have been to 3 doctors and they have no idea but I am about to go to another doctor in this area. I have a herniated disk in my lumbar area but that’s been there for a long time and it seems like this has been happening to many after a sexual encounter.

Let me know what you guys think and would love to hear some feedback. I have also be assured by two neurologist that my disk issue isn’t affecting nerves that come to the penis.

ginz4uuu profile image
ginz4uuu in reply to Antonio333

Hey mate as u mentioned u went back to ur old gf? Did she got any std from u? I mean in this way did u rule out it was sex related or nerve issues

qumrur profile image
qumrur

Burning penis pain for last 8 months. Except hsv 1, all std report come negative. Take medicine for herpes, but no improvement of penis pain. I am taking amitriptyline 12 mg + Chlordiazepoxide 5 mg. It relief some pain.

Subarusvx1000 profile image
Subarusvx1000

Have you found relief?

LemonadePain profile image
LemonadePain

Finally decided to participate as ive been having similar symptoms for nearly 2 years. Mine started as an std. Anyibiotics worked the first time. But my dumbass got infected immediately after being cured. They then stopped working. Been living in pain for the past 2 years. Its definitely gotten better tho. Im from south africa by the way.

Painforawhile profile image
Painforawhile

Maybe it's not the right thread. But has any of you been tested for allergy og hypersensitivity towards semen? I am a male.

ActiveLife profile image
ActiveLife

Hi All,


I came across this thread early last year and it was involved in my inspiration to explore treatment options for my bilateral glans pain/discomfort that has been consistent for years and that came on rather quickly and before I was sexually active. I, obviously, welcome any advice that might help me continue to get the pain to zero, but more looking to contribute some of the things I've tried with positive effect.


For the first few years, my only treatment was learning how to sew and sewing a "sock" that hangs from my boxer waistband. My stuff slips into the pouch and that substantially cuts down on the daily friction. I am obsessive about finding the most comfortable fabric, but have been having success with NextLevel pure cotton tees.


After a few years, I found the courage to talk to my new doc about it. After seeing, in the beginning weeks, urologists and dermatologists with no helpful advice or treatment, I had just admitted defeat. However, my new doc, after going over what had already tried and not worked, asked if I thought it could be nerve related, which had never crossed my mind. He prescribed me small dose Amitriptyline and Gabapentin. Amitriptyline helped enough to say conclusively that it was nerve pain and Gabapentin was what cut the pain by a little more than half. I went a few more years with this as my treatment.

Over the last year, I’ve seen some pain specialists and got a couple of nerve blocks in both Pudendal nerves. They numbed the pain (and most every other sensation) for about 48 hours but it did eventually come back. I was happy to have it done for diagnostic purposes. This is a long-term project for me and I like having conclusive data. Now we at least know the problem lies somewhere in the path of the PN. An MRI didn’t turn up anything the docs could associate.

The BIGGEST breakthrough this year came from a random experiment I did applying Lidocaine cream to my glans. That has had FAR AND AWAY the biggest affect. I apply twice daily (sometimes three times if I’m active or want to enjoy myself a little more). That in combination with the other treatments, all of which I still use, bring my pain from a 7/10 to about a 1-2/10. Multiple doctors affirmed that it was a great idea and had so significant side effects. I’ve been using it for close to a year and believe it has been consistently helping. I take breaks from it for a couple weeks every few months just because I get nervous it might lose its efficacy, but it seems to be dependable so far.

Just thought I would post to show some good karma in appreciation for the improvements my treatments have offered. I’ll try to check back every couple months on this forum and use it as part of my quest for a better life.

And one last word of encouragement: though I kick myself for not pursuing a solution earlier, I have to say that some of the knowledge and treatment I came across this year just wasn’t available when my symptoms began. Science continues to move forward and the study of pain is still in its infancy. There is more and more energy being put into it every year. I plan to keep revisiting the issue every couple of years to see what new science the medical world has to offer. All the best!

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