Am I on the right track?

[code-writer]

Hi, I’m new here. I’ve been suffering with pain in my scrotum since I was 21. I turn 25 next month. It has been pretty horrible. I have never had sex in my life or a positive UTI test to my knowledge. My epididymis is very tender, and just touching it a couple times can trigger swelling and a flare up of pain. Sometimes touching it will trigger some semen leakage or clear discharge. I also see it happen after a hot shower or leaning over. I often feel heaviness with my scrotum.

I have been to a hospital many times, because doctors worry about torsion whenever someone mentions testicle pains. I have been referred to many urologists, but most tell me I’m too young for problems and don’t take me seriously. Unfortunately, I have had 11 scrotal ultrasounds. None showed any serious problems, except a 3mm epididymal head on the left side and a mild increase in blood flow once.

I have taken many antibiotics over the last few years: ciprofloxacin (at least once for 2 weeks, I think), doxycycline (twice for 14 days) and trimethoprim-sulfamethoxazole (once for a month). I thought that I started to improve towards the end of the course of the last antibiotic, but I’m not sure it just didn’t take its course. I found that sometimes pain gets worse after an ejaculation. Sometimes it doesn’t. I do not ejaculate regularly. It mainly happens in my sleep and wakes me up.

For the last month, my entire pelvis has hurt really bad. I can’t wear jeans anymore, just sweatpants. I saw two urologists. One wanted me to start another month long course of antibiotics. Another specializes in CPPS. She says I should pursue pelvic floor physical therapy, anxiety treatment, ibuprofen and take a baclofen/diazepam suppository when the flare up is significantly bad. She seems very knowledgeable and kind.

I recently learned my uncle has chronic prostatitis. He started with testicle pain at 18. He has been on antibiotics for years, and he told me that he goes on ciprofloxacin for a month every two years. He says it helps him.

My flare-up is really bad right now. I’m worried, because I don’t know who to trust. The kind CPPS urologist said that she does not suspect an epididymitis or infection, because I have no risk factors (never had sex). My urinalysis are clear. She has done a digital rectal exam and palpated all of my muscles and nerves. She found some painful. She suggested that I may be suffering from a nerve entrapment, but she told me not to google it due to the worrying surgeries that are described.

Am I on the wrong track? Is there some tests that I should insist upon? Is there anything I can do?

[webslave]

CPPS is common in programmers, due the the tense sitting. I got it when I was still working as a systems analyst with a team of programmers under me. Orchialgia is one form of CPPS.

Avoid antibiotics. They only help for complex reasons (see page on our site about it), not worth the risk.

Nerve entrapment (pudendal nerve entrapment) is a fringe theory you should avoid (see our page about it).

In your shoes I would read the main site, all pages, then come to the forum and read all the Best Posts, then ask more questions if you need to.

[code-writer]

Hi, I had the weirdest event last night. I sat down on my chair to listen to an audiobook. All of the sudden there was a severe pain in my right testicle. I took of my pants to find it swollen with a bad redness at the top, near the epididymis. All of the sudden, entirely flaccid and unprovoked by any stimuli, semen started coming out of me. The pain and redness subsided afterwards.

I irritated the testicle the other day b/c I kept trying to find where a pain was. My doctor says it’s like an eyeball. You can touch it once without issue. If you keep touching it, it overreacts even with the mildest of trauma.

I have no idea what is going on, but I am scared out of my mind. My doctor says it is not infectious. I have clear urinalysis. I have never had sex, so she says my risk for epididymitis is ridiculously low and isn’t worth considering. Please help me and advise what can cause this. It’s not continuing to hurt, although I get the occasional lightning strike of pain.

[webslave]

Like many men with CPPS, you are neurotically over-focused on your symptoms. Handling the testicles again and again, like worry beads, can cause a reaction, as you have found out. It could be that you have provoked a mild case of "testicular torsion" (Google it).

[code-writer]

@webslave I do think that I have found I can irritate it, but I don’t think it’s torsion. There’s no twisting. It’s generally a swelling of epididymis after I touch it a couple times. I’ve stopped. Learned my lesson. I’ve started physical therapy for CPPS and therapy for my anxiety. My anxiety is usually not about my body, but it’s been so weird lately.

I’m not trying to be neurotic. I went all yesterday without excessively touching or dwelling. I felt okay, and there was no swelling all day. That’s why I became concerned last night.

All I did was sit on a recliner and turn on an audiobook. I feel extreme pain, pull down my pants and they are swollen. The right one is red around the epididymis/spermatic cord. I do nothing. Touch nothing. Grab my camera to take a picture to show my urologist I’m not crazy. Was completely flaccid and spooked. Then, semen starts coming out of me unprovoked. It wasn’t bloody, but had an off-white, light yellowish hue.

I’m panicked because I have never seen myself swell up, redden and start ejaculating unprovoked. I didn’t know this can happen. Is this normal? What can cause this?

[webslave]

Not sure. It's a first for this forum. My guess: either an inflammation caused by over-manipulation (epididymitis), or a touch of varicocele, or a temporary, evanescent torsion-like episode.

[code-writer]

I can’t take this anymore. I have read all the materials, I have gone to pelvic floor physical therapy 2x/week for 4 months and I have changed my life to get more exercise. I still have these pains. I wake up every day with a severe pain right above my penis. I’m tired of this nerve or muscle theory. Every time I took antibiotics, I felt better. I’m 25, and this is ruining my life.

[webslave]

I'm confused. You had testicular pain, now it's above the penis?

[code-writer]

Yes, it has been worse than prior experiences. It went from testicles to my perineum to now above my penis. I feel it where the bladder is. I keep falling into flares of misery. I’ve been tested for every std under the sun; everything is negative. I don’t have sex and never have.

[webslave]

Classic. CPPS is migratory in many men, and in most over time.

[code-writer]

I’m not recovering. My doctors (6 urologists) have never helped me or ordered tests of EPS or semen. I have been fighting since October with the worst flare up. No antibiotics this time. Every time prior, it was fixed in 2 weeks. I have been to physical therapy twice a week since november. I’m not better.

Today, I feel the pain in my butt. I pooped and milky white fluid came out of my penis. It’s prostate fluid. I’m done.

[webslave]

After 6 uros, 11 hospital visits, and many courses of antibiotics, I think it's safe to say that there is probably no physical problem. Too much sitting, no sex life, obsessing about your poor old testicles and touching them all the time ... really, you need to change your lifestyle completely.

[code-writer]

But that’s the thing... I have changed my life completely. I don’t just sit all day. I average 9,000 steps and 45 minutes of exercise. I’m often filling my rings on the Apple Watch I splurged on for my 25th birthday. I have a new ergonomic chair from my employer. I have been to my physical therapist over 30 times and it costs $500/week. Add to that therapy where I have been told that I’m doing everything right for $225/week more. Insurance just started to kick in after I reached my out of network deductible. Now I owe $200/week.

The first 3 urologists I saw said I was too young for problems, and they ushered me out the door. The 4th wouldn’t answer my questions at all. The 5th tried to put me on antibiotics for long periods of time, and I was not comfortable with that. He said I may have a genetic variation that causes bacteria to accumulate in my prostate. The 6th just accepted the diagnosis of the 4th without any testing.

Yes, I have been to the hospital many times. But, I haven’t been since October. Nobody knew what I was suffering from. The ER doctors instructed me to return in case I was suffering from intermittent torsion. Whenever I’d have a bad flare, Telehealth would advise me to return to hospital. They’d tell me I should not risk my testicles and it can’t be evaluated online.

I have tried to engage in other things. I’m a traditional guy, so I don’t have a sex life. I’m proud of that. I’m waiting for the woman I’d marry. No doctor believes that has anything to do with my problem, and I’ve found that ejaculation can sometimes exacerbate the issues. I tried going on three dates. I didn’t feel a chemistry and ruined at least two of them. I have not been obsessing. I’ve been trying to live. If you look at the backlog, I’ve had a few posts: 11/17, 12/02, 2/28, 3/03, 3/07. These had fairly long stretches of discomfort with no posts by me.

Finally, I do not rule out a genetic component. My distant uncle started having the same pains when he was 18. He suffers on and off to this day. He is wholeheartedly convinced it is bacterial, and he takes Cipro for one month every year or two. He keeps telling me that my decision is misguided.

Here are the facts for me:

1. I’m struggling to function; to even sit and do my job as an engineer due to the pain.

2. I’ve been to physical therapy more than most men, and I have not seen a substantial reduction in pain.

3. I have had to forfeit many behaviors I enjoy, including running, or learn to do it with the pain.

4. I’m horribly depressed, alone (family 2k miles away b/c I moved for a new job in San Francisco Bay before the pandemic), no friends on this side of the world, nowhere to go since lockdowns are strict and I feel like I have nobody who cares.

[webslave]

Depression and isolation are probably exacerbating this. Sounds like you don't have much of a social life. Have you tried saunas, hot baths, amitriptyline, quercetin, pollen extract, breathing exercises ... to name just a few?

[SoraStar]

Hey code-writer. Man, that's really tough. I'm sorry to see all that you have been going through. I do have to agree with webslave, I bet the isolation and depression definitely play a big role in this as crazy as it may sound. Like webslave also mentioned, Quercetin would be some thing I would recommend trying if you haven't already done so. It worked wonders for me when I was dealing with all this back in 2017. Give it a try! Keep fighting!