Am I all alone?

[lancer]

Hello,

I'm new here but have suffered for years. I'll start by saying that I'm just a terrible person, and this is no doubt my punishment.

I've suffered now for 3 yrs with terrible urinary and prostate troubles. It started after an out of town drunken stupor and a one night stand with a bar slut. My marriage had been rocky and things just happened, no excuse though I know. I never had any STD before but the burning the next day was an obvious indication. Went to Dr and was tested and treated. The tests all came back negative. The symptoms subsided and I thought it was over. I felt bad enough and told everything to my wife, she forgave me, something I didn't deserve.

Soon after, the symptoms returned and more testing and medications ensued. All tests have always been neg, but antibiotics always help. At one point it turned into a horrendous acute prostatitis infection lasting several months. I was borderline suicidal at times. I finally beat the prostatitis with a 2 week Levaquin/Flagyl cocktail.

The whole thing almost faded away a couple times, only to come back again.

So here I am. I've seen several clueless doctors, 5 Urologists who all gave me completely different diagnoses for the same exact symptoms, none of which helped. I can't find anyone online with the same symptoms. I'm in agony and falling into a depression over this.

My current symptoms.

1. Constant urge to pee, even when bladder is empty.
2. Constant tingle in tip
3. Urethritis, from tip to bladder, I can feel urethra burning
4. Bladder pain when full
5. Pain is less when standing or after urinating
6. Pain is magnified for days after ejaculation. It gets a little better if no ejaculation for a week
7. Antibiotics always help.
8. It always returns after sex.

We have both been tested and taken courses of antibiotics. She has never had any symptoms whatsoever

About a month ago, we both took the Lev/Flagyl course together. My symptoms were nearly gone for a month, using condoms. But instantly came back after unprotected sex.

She has never had any symptoms, tests are all negative, I have no visible indicators. Everyone thinks I'm crazy or making all this up. It is very painful and depressing. I wish I had just an ounce of hope. Does anyone have anything similar going on?

[webslave]

Symptom #6 indicates CPPS. Antibiotics, even though they seem to help, should be avoided.

This is not an infection, but may be the aftermath of an infection.

[lancer]

Thanks webslave. The one time that I avoided antibiotic was the time that it turned into the devastating prostatitis infection. I can't afford to let that come back. The antibiotics do work for me. #6 doesn't actually apply if I have just taken a round of abx. I can ejac daily with little or no after effects. It's only after unprotected sex that the symptoms come back and gradually increase until it's excruciating. I've gone for 2 months without sex or symptoms, then it comes back after sex. I'm so confident that this is something that is transmitted sexually, but all the tests have always been negative, and Drs seem to be limited to only textbook knowledge. One Dr told me I might have sensitivity to normal vaginal bacteria. That's just great! I'm allergic to vagina? What a freakin curse! The Levaquin/Flagyl treatment works good but the side effects are terrible. I'm at a point where the pain is getting unbearable again, I know I can ease it by taking the abx again.

I think I'm gonna try doxy this time and see what happens. Its so frustrating because after abx I feel great. Even though I know sex will bring it back, I always get overconfident and let my guard down. Then I'm right back in pain again. I haven't heard of anyone else with this problem.
We can land a spaceship on a meteor, but Drs are clueless. In my experience, the Drs don't really seem interested in helping. They only know what the pharm companies want them to know. I know I've spent about $20k on this already. Why would they want to stop the money train?

[webslave]

You said:

The one time that I avoided antibiotic was the time that it turned into the devastating prostatitis infection.

but also

All tests have always been neg

You need to understand that there is no infection, and accept what I am telling you about how antibiotics work.

One Dr told me I might have sensitivity to normal vaginal bacteria.

Absolute nonsense.

[lancer]

Thanks webslave. I understand what your saying. I just can't help but think that there's some unidentified bug in there. It only makes sense. Why does the antibiotics make it go away? If I don't take antibiotics, the pain gradually gets worse until its unbearable. But taking the abx will reduce symptoms within a few days. Its so frustrating.

I've tried all kinds of herbal remedies, diet changes, exercise. But I always have to revert to the abx to knock it back down. One thing I haven't done is a semen culture. The uros around here don't want to do it. I just feel terrible, At least when I had prostatitis I had others to talk to with similar symptoms. This is only urinary and bladder pain. I've been told it may be IC, but that seems to be what they call it when they don't have a clue. I joined this forum hoping to find other men with IC so I could compare notes.

Thanks webslave it helps to just talk about it. Its not something you can just go talk with friends about.

[webslave]

I just can't help but think that there's some unidentified bug in there. It only makes sense.

It seems intuitively right, but it's not.

Why does the antibiotics make it go away?

Read the whole page:
https://ucpps.men/antib ... ry-agents/

One thing I haven't done is a semen culture. The uros around here don't want to do it.

I agree with them:
https://ucpps.men/eps-s ... itis-CPPS/

[lancer]

Interesting reports, makes sense. I've been reading through the posts and trying to relate to them. In the mean time, I just got some more test results back, this was the most thorough testing I've ever had. And...once again it was all negative. So you convinced me to not start another abx course.

Somehow I just realized something. I'm not sure how long I've been doing this. I noticed that I was involuntarily clenching my butthole muscle. Like I was trying hold it all in tightly. I had to forcibly unlock those muscles, but when I quit thinking about it, it would go back to clenching. Its amazing that I never noticed this. Have I been walking around like this all year?

So, instead of the abx, I took some diclofenac and flexeril and focused on keeping those muscles relaxed all day yesterday.

Its only been one day but my symptoms have significantly decreased. I can't believe it. Its too soon to say this was the whole problem but I'm gonna keep working on this.

It would explain why it was worse with stress. I'll keep you posted in the next few days if it keeps getting better. Thanks.

[lancer]

This is really crazy. I've been to a dozen doctors, eaten jugs of antibiotics, and I've suffered for eight months just this year. Webslave, I didn't take the last script I got thanks to you. For the last week, I have focused on relaxing my pelvic muscles. I've been taking flexeril and diclofenac for inflammation. I feel amazing after a soak in a hot tub. For the last eight months I have had major discomfort every single day. Today, I had almost no symptoms. For most of the day, I had forgot about it completely. It's been getting better every day. I still think it started with some kind of infection. But they docs could find anything, and wife never had any symptoms. I'm so confused. It's just sad that we pay thousands to these doctors and they just don't have a clue. This is such a terrible condition, but you just have to keep trying new things and don't give up. I know that I'm not out of the woods yet, but I'm hoping this will continue to get better and hopefully it won't come back.

[webslave]

It's just sad that we pay thousands to these doctors and they just don't have a clue.

That's the only reason I keep this site going.

[Cree]

Try and get an appointment with a physical therapist that specializes in pelvic pain. The fact that you get so much relief from hot baths points to hypertonicity in your pelvis or even trigger points. You have to address the mental stuff at the same time. Calling yourself a "terrible person" as you did in your first post may be one of the reasons the pain is lingering. Look into Alan Gordon's work, he talks about the "inner bully" and how the brain reacts to those kind of self-defeating mental assertions by sending the body pain. There a lot of posts on Alan Gordon. Also, guilt is a VERY powerful and COMPLEX emotion, you may need to explore that theme as part of recovery.

[MajorSky1]

I second all of what Cree says.