Continuing “Un-explained Event” – Urethra Pain

Lostnthought,
Reading your description sounds so familiar and I can not provide an easy answer however feel compelled to share a similar experience. For me these symptoms you describe have been there for just over 2 years post prostatectomy surgery for prostate cancer.
Many tests and doctors’ visits and still the condition persists.
I’m 67 years of age now. I have had 2 cystoscopies each showing some scarring but my bladder empties completely on PVR tests. Infectious disease Docs have tested me for everything that can cause uti and found nothing. Mayo urology suspected lichen sclerosis and dermatologists have said it’s nothing.I did 10 weeks of intra urethral clobetasol, a strong steroid(Mayo urology prescribed)which did help a little although it was torturous. My new urologist at home says he does not suspect lichen sclerosis but wants to continue monitoring me for the scarring and said my symptoms are more in line with stricture problems. You say you have no scarring so that is ruled out. I’m not convinced that my scarring described as mostly mild is what is causing my symptoms.
The latest suggestion given(Mayo) was cystoscopy with biopsies to rule out urethral cancer “ or anything more sinister “ I am very hesitant to agree to that torture so like you I am hoping and praying for healing as there are times when it seems considerably better mostly early in a day and then worsens by days end. Definitely do not give up and 2 or 3 opinions can’t hurt. I hope you find an answer or The Great Physician heals you in time. Please let me know if you figure it out and thanks for sharing your experience,
Brice

I started to have pain in my penis many years ago, it felt if it was at the tip but when you felt it was not coming from the penis. I now believe it is coming from the urethra or external sphincter. The pain makes me feel like I have to pee all the time even just after going. It lessens the pain when I am actual peeing(muscle relaxed) I had high antibiotics treating for infection and prostatsis. I even had a surgery to unblock some things. It did not work and I learned to live with the pain which came and go. I was having more urinary frequency, urgency issues as time went on.
Two years ago I got an MRI of the prostate it showed a high probability of cancer. I was extremely stressed because I had ignored the pains in my pelvic area. The pains in the pelvic area became constant and I was getting burning in the rectum area. At one point just before my biopsy I got pain throughout my pelvic area, it was inflamed. The urologist said it a nerve issue. This started for the first time that my issues could be the pudendal nerve.
I had the prostatectomy and the pain in the perinium area disappeared (I believe it was the seminal vessels which were clogged due to prior surgery to shrink my prostate) and for one week when I had the catheter in I was sleeping through the night. I was extremely happy and thought the pain at the tip of the penis was the catheter and the rectal pain feeling I had to go giving me pain and feeling I still had to go. When I actually had to go the pain became unbearable and I would have accidents. I ended up having sitting pain and penal pain. I started physical therapy and stopped doing Kegels. The therapy helped lessen the pain and relax the external sphincters for rectal and urinary. I started the Kegels and the pain came back in intensity. I stopped doing Kegels, avoid sitting, sit on a doughnut. I am on Cymbalta for pain and depression, and oxybutin for urgency and have both urinary stress and urgency.
My two priorities is lower the pain to a tolerable level so it does not stop me from seeing my grandkids and to be able to sleep. The urinary incontinence is secondary and I can manage it by wearing protection.
I have gone to pain management and am going to get a pudendal nerve block. This will give me a better idea if it is pudendal neuragia and it may also lessen the pain for a period of time

I am not a doctor but you should look into pudendal nerve pain. I wish someone had mentioned it to me many years ago. But back then it was not looked at.
Best wishes and wishing you happiness always

I'm wondering if wrapping a penis with soft padded dressing might help the pain, especially with it rubbing on underwear. I'm dealing with pain right now post implant surgery. I'm wearing stretchy, snug boxer briefs, which hold everything in place, so nothing rubs.

I have chronic pain in my feet and ankles from peripheral neuropathy (CIDP), and use 5% lidocaine cream to numb the pain enough to go to sleep. The cream I get is Base Numb, on Amazon for under $20. Prescription is over $100. The packaging says it's used for tats, and for anal rectal pain. Maybe it would give at least some temporary relief.

I wonder if a neurologist or a physiatrist might be able to figure out a diagnosis. Anyone tried those avenues?

Chronic pain is harder to deal with that people realize, and it has a definite effect on mental health. That's certainly my experience.

Jim

Are you having any problems with your low back? S2 and S3 nerves feed to penis and testes. Since this seems to be a nerve issue could it be spinal complication?

I have always feared being that anomaly suffering from something, where tests and scans brought no conclusive results yet the pain was persistent. Medicine has come a long way, but seems very barberic in a trial and error sense. Still a lot of things about the body that are un-known. If you are having pain that cannot be determined by the usual methods, you become atypical.
I did not have a good experience with my cystoscopy. I was already fearful to have the procedure performed with the pain I was already experiencing. I opted to include nitrous oxide so there would be no pain. I am not sure if the nurse was new or not, but she turned on the machine, gave no instructions, and then stood there looking at her phone. She then asked if I was ready, after a few minutes, I explained that I was waiting on you to instruct me. I began to take the nitrous, but I am not sure how long I was under. It seemed as though the doctor walked in shortly after, but I am not sure if it was the effects of the gas that made the time go buy. It was really painful for me, the doctor said when he reached the pelvic muscle, it was extremely tight, which would make sense because of the normal pain, but it possibly could be because I was not given enough nitrous. I will definitely be looking for a second opinion. I am thinking of one doctor in the Medical Center. I really appreciate the feedback. I hope to update on my progress and any new treatments that I find.

It definitely feels good that I am not the only one feeling some of these symptoms such as the feeling to pee most of the time. I keep asking myself what exactly have I done to bring on such pain with no explanation of why. It has to be such an anamoly and cannot be easily diagnosed. I am definitely not trying to ignore the pains. I mentioned to my wife this morning, "when I get up in the morning, **normal** should not be any pain (except for the occasional back pain). For me this pain I am experiencing is slowly starting to become a normal thing." That scares the shit out of me, because my hope is that I will wake up and the pain will 100% be gone since it 100% came out of no where. As I mentioned earlier, no surgeries, no illness, no injuries. That thought of being pain free is what is getting me through the day on to the next. To have no cause and no true diagnosis does not sit well with me. I cannot believe that it is all in my head and that I am willingly forcing my mind to concentrate on this pain. I do believe that something physical is causing this pain. There are times that I have been sitting still and all of a sudden I have had a short wave of increased pain in my tip. I normally just re-adjust myself and it goes away.
I am sorry for the long-term pain that you are experencing and seems for you has unfortunately become a norm. I had another user mention the S2 & S3 nerves. I wonder if this is the same as the pudendal nerve pain. I will continue to research these and mention it to my Urologist. I really apprecate your input. Hope this coming New Year will be less to no more pain for you.

That is actually a good idea. My wife mentioned the same changing my underwear to something with more padding, more supportive. She mentioned she saw this one underwear that gives more support to the scrotum. Not sure if that will work, but I guess is willing a try. I also read that adding petroleum jelly to the tip may help with the daily tip rubbing against my underwear. I havent tried this yet, so I am not sure if this a good idea.
Something tells me that I will be eventually seeing a neurologist or psychiatrist if the pain does not subside. I am actively seeking a second opinion to see if I go down the same rabbit hole. The pain is definitely not on the high threshold, but dealing with the same pain on a daily basis runs you down mentally. I try to express to my wife how much I need her support during this time. I do not have the drive to leave the house just because I know it will involve me moving about. I am definitely depressed and finding it harder to concentrate on things that would normally free me of thought.

It is not abnormal for me to have back pain in my lower back. I tend to sleep really bad, tossing around at night so I may have back pains at least once or twice a week. I did a little research on the S2 & S3 since you mentioned it. I did see a few other extremes that come along with it. Gladly I am only expereincing the pain in the groin.
- Loss of control of your bladder or bowel.
- Breathing difficulty.
- Pain in the lower back.
- Pain extending down the back of your legs.
- Spasms of your muscles.
- Loss of ability to feel heat or cold.
- Pain in the groin and buttocks area

I will definitely keep this in mind if I end up speaking with a neurologist. I do feel like 99% of my problems will be weight related. I would like to lose weight and see if this solves my problem, I know that is easier said than done. I am 5'10 300 lbs and would like to lose about 75 pounds. Before this issue I was excercising 5 times a week daily and since it started, I stopped entirely. It is hard to excercise especially with the issue I am having. I hope to find somekind of middle ground so I can continue to work out. Seems excercise is the solution to a lot of things in my life.

Once I retired I and stopped traveling weekly and began to center on myself I improved. I went from 206 to 160 in about a year by cutting out bread type carbs and pasta, I walk 2 miles daily and go to gym 2x week. Retirement allows me the freedom now. Once you’re motivated you’ll find another exercise that works for you. The weight may play a big part in the symptoms as you pointed out. Go achieve your goal.

The pudendal nerve goes through S2-S4. It can be damaged here or other places in the pelvic area. My feeling is the some of the sensory nerves have become hypersensitive and minor problems which should not be painful are. I feel I am extremely sensitive to tightening the external sphincters and pressure. When my penal pain is high and I cough I send electrical shock pain down my calf. Being stressed which tightens muscles only slightly in the pelvic area causes the pain to rise over a period of time. One branch of this nerve feeds the penal area. Pain further up can be felt at the penal tip. My nerve damage if it is at the point of all three branches since I have rectal pain and perinium pain. Good luck to you