Extreme pain in penis: I was dx with... - Advanced Prostate...

Advanced Prostate Cancer

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Extreme pain in penis

22 Replies

I was dx with advanced PC two months ago. It is apparently aggressive, with bone scan, CT scan, and two MRI's indicating metastases at several sites on bones including pelvic area, and external to areas around prostate. No organs involved and apparently no lymph involvement. I had a Lupron shot and began Casodex in early November, then switched from Casodex to Zytiga a week later.

A couple of times (days apart) before the treatments began, I had a burning pain in the inside tip of my penis that lasted about 3-5 minutes then went away. I was checked for infection but it was negative. Then a few days ago (about two weeks after treatment began), while driving the car, I had that same pain for thirty minutes - - at a level off the charts! I screamed the entire time, and was just about to go to ER when it subsided as quickly as it came on. That was a week ago, and no repetition.

My MO, pharmacy reps, and nurses are stumped as to cause.

Any ideas?

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22 Replies

TreeDLeader - I have had the same exact problem off and off for several years. Seen two urologists, neither had an answer. Had a MRI of my lower abdomen which showed nothing. Also had an extensive urine analysis which ,yes showed nothing. More blood tests performed than I thought existed, nothing! They (urologists) determined I don't have a UTI or any visible cancer growth from my kidneys down to the tip of my penis. My MO has a hunch and the hunch is that the head of my penis has some sort of nerve damage due to past chemo treatment.

The solution? Live with it! Finally; my pain comes and goes at the drop of a hat. I go to sleep in pain and wake up feeling great.

in reply to

Wow. Thank you. At least I'm not alone. The beauty of this group! :)

de-luke profile image
de-luke

ADT can have some unexpected side effects. Black Cohosh -herb seems to help. I also take several anti inflammatories.

in reply to de-luke

Thank you!

in reply to

The first two brief, less intense episodes were before ADT began.

Tall_Allen profile image
Tall_Allen

Does pyridium help? If not, it may be due to nerve impingement - maybe see a neurologist.

in reply to Tall_Allen

TallAllen, are you referring to the penis pain or sciatica I mentioned in a separate post? I don't know what pyridium is, but my most recent MRI does show some nerve impingement that might be causing the sciatica.

in reply to Tall_Allen

I just looked up pyridium. I did take AZO for a while before PC dx, but stopped when the ADT started.

Chugach profile image
Chugach

I had some soft tissue metastasis at the base of my penis that were causing me pain. My uro didn’t know what the lumps were (and wasn’t interested in figuring it out) so I got another URo who ordered an MRI that found the masses. My first time with chemo eliminated all the soft tissue metastasis. It hurt and I was pissing blood. I hate cancer!!

in reply to Chugach

I don't have any lumps that I know of, and have had two MRI's of that area that didn't show anything in penis.

Chugach profile image
Chugach in reply to

It’s good to know you have no soft tissue tumors. Those do cause pain when they ‘break new ground’. You know what’s worse than prostate cancer? Penis cancer!! I mean seriously … no man deserves that. I hope you find a solution

londoncyclist48 profile image
londoncyclist48

You've tried the obvious I take it. Like, wearing very soft underwear, changing underwear a couple of times a day, not using any soap in that area. I have used a product called Timodine on my foreskin but this sounds like more an internal problem. Have the doctors been poking around down there while they investigate your prostate cancer? There are obviously many myths around cranberry juice but having a couple of glasses a day may or may not help.

in reply to londoncyclist48

Hasn't been any poking there. Pain was inside tip of urethra. Don't think underwear would affect it. (I've been wearing adult diapers.) Also been drinking Cranberry juice and pomegranate juice.Every once in a while I still feel a quick jab of minor but similar pain there.

katartizo61 profile image
katartizo61

maybe a long shot??? The piriformis muscle can refer pains to the groin penis area. Get your wallet out of your back pocket and try a deep massage therapist, can't hurt

in reply to katartizo61

Stopped wallet in pocket years ago. I have gotten periodic massages in the past, and tried to get insurance to cover therapeutic massages, but won't be covered. I will just pay for some and see if it helps.Thanks!

katartizo61 profile image
katartizo61 in reply to

Try this. I used this and a much larger massage ball through out my last 6 months, very effective and inexpensive: shazenmassage.com/how-to-us...

in reply to katartizo61

Thanks! I have used a ball in bed under my hip just to sleep on, but have not tried the actual massage/rolling. Will do! (My sciatica has seemed to be improving over the past two days, but it still comes back after periods of relief.)

katartizo61 profile image
katartizo61 in reply to

There are certainly several factors to set muscles into spasm or symptom expression to consider. The massage described I do on carpeting every day. I take Trace Minerals No More Spasms as well. + some additional nutritional supports.

dadzone43 profile image
dadzone43

Yes. Invasion by the tumor of the deep or superficial perineal nerves. [google.com/search?q=perinea...] My brother had that from bladder cancer. His physicians kept ordering tests instead of thinking and remembering their gross anatomy lessons. They never figured it out. He died in agony. It is neuropathic pain and can be very intense and then go away.

j-o-h-n profile image
j-o-h-n

My ex-wife was a pain in the ass.... come to think of it she also was a pain in the dick... She left, pain gone....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/09/2021 7:08 PM EST

in reply to j-o-h-n

LOL! 😜 I, too, find humor in just about everything. It has healing powers.

j-o-h-n profile image
j-o-h-n in reply to

You're just not whistling Dixie............

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/09/2021 7:23 PM EST

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