Prostatitis going on 2 months. My story, your advice.

[cam3roni]

Thanks Sky, all good advice, and you're def right about the internal massage can be too much sometime and it's about finding the right balance.
I don't think I have an infection anymore by any stretch but my main conflict is determining if this is in fact muscular or an immune issue. Going the muscular route really hasn't helped and I've been quite dedicated. The recent MRI finding that suggest that its just plain old mild inflammation of the peripheral prostate that won't go away. So I am lost in knowing how to approach it from here but I am going to continue to just live life and try different things and hope I get better. Thanks again!

[cam3roni]

Hey guys,

Just wanted to check in. I still have symptoms, but nothing new. Pain on left side of perineum, weaker ejaculation, weaker urine stream. If I don't ejaculate my pain can be barely noticeable, a 0. 5/10. But if I do ejaculate, I usually see a spike in pain for 3-5 days afterwards being at a 3-4/10.

I've been taking amitriptyline 25mg every night before bed for the last 3 months. I think it helps with morning pains but I don't think it has a huge effect. I've also been taking Meloxicam to potentially help with inflammation, I'm not sure how much it helps, definitely not a cure. I've been taking it for a month and a half. I have stopped stretching, I haven't noticed my symptoms get better or worse from stopping stretching. I've recently starting using a TENS unit on my left bulbo muscle/ perineum as another shot in the dark. I will report back on results from it.

Wanted to give an update to anyone wondering. Thanks.

[ddd]

Hey cam3roni, I've been following your page closely. Any updates? Hoping things became better for you.
I too have a similar experience. In my case I'm 100% sure what triggered my case was receiving unprotected oral from a prostitute. I tested positive for ureaplasma urealyticum, which is one that has been commonly isolated from symptomatic male/female and known to be associated with a variety of urogenital conditions. Over the course of the last 40 days I've been on three different antibiotics (doxycycline, azithromycin, moxifloxacin). Given this onslaught of antibiotics you would think the bacteria would be completely eradicated by now (and statistically speaking this should be the case). But my symptoms have mostly persisted and they come and go. I haven't achieved any long term relief. My main problems are slightly aching right side testicle and constant feeling of burning in the lower abdomen/base of penis/urethra. I don't have any urinary problems nor the "golf ball" anal pain nor ejaculation/sexual performance issues that some chronic CPPS sufferers tend to report. Really really confused by what's going on.

My guess is that in some cases like ours, everything can start with a bacterial infection which induces a whole host of changes in the system. Even after the bacteria is gone symptoms don't return to normal given what could possibly be a persistent residual inflammation, changes in nerve/sensitivity, or other complicating factors. So, this might be a long recovery process for us...

[Avyar]

Hi ddd, after you took the antibiotics, did you do another check and everything was negative?

[ddd]

I was on antibiotics until two days ago, so need to wait for at least 2 weeks to get tested again. Whats your story Avyar?

[guido]

Did you do the full std testing, including Mycoplasma genitalium?

Did they found any wbc’s in your urine or swab?

[ddd]

Yeah got tested for the four genital mycoplasmas. But didn't get WBC test (I should next time). What a fruatrating ordeal. You just have to keep peeling the layers until you get to the truth. Based on my experience the hardest part about all of this isn't even the treatment, but managing my psychology/emotions. Trying hard to find joy in life again. Its been truly destructive emotionally.

[Avyar]

I was on antibiotics until two days ago, so need to wait for at least 2 weeks to get tested again. Whats your story Avyar?

At first they found nothing, then they found e. Faecalis and mycoplasma hominis, I took antibiotics, then they found e.coli and ureaplasma, again antibiotics, after that again e. Faecalis, antibiotics, now the last three cultures are completely negative.. but in the last days pain has increased a lot, I’m feeling so bad and worried. Also WBC‘s have been found regularly, also blood, but only after prostate massage, normal urine is totally clear. Prostate has quite a lot of calcifications.
A mistake was it that I took ciprofloxacin by myself when it started without going to the doctor first.. that’s why it’s possible that the first culture game back negative and the doctor didn’t want to give me antibiotics.
Right now I have a stinging pain in the bladder that I haven’t had for two/three months, I have no energy, I feel upset and worried.

[ddd]

I'm not of the "everything has to be bacterial" camp, but I do feel for those of us whose suspected initial trigger was bacterial (sexual encounter), that we need to initially try to rule out bacterial causes through extensive testing (and appropriate course of antibiotics if needed). In many cases PCR tests are preferred over culturing for pure detection purposes given higher sensitivity. Also, best to test for both urine + semen/EPS. In my case they detected ureaplasma, but antibiotics has not provided me any lasting relief. Infectious disease specialist seems to believe there is no way the bacteria could have survived all three antibiotics. Plan on getting tested again in 2 weeks. So the most likely case for me, I'm guessing is that, bacteria was a trigger point but even in its absence the issue has morphed into a multifaceted thing of its own. I'm seeing many on this forum that suffer from a similar case so at least it's somewhat reassuring...

[cam3roni]

Hi ddd,

I am not better unfortunately. But I have more good days then not good days, so I am for sure better than I was. My current symptoms remain the same. My pain is still completely isolated to my left perineum area. My ejaculation strength is still weaker. Urine stream is still weaker. Those are my main 3 symptoms.

Ejaculation helps 50% of the time, the other 50% causes a flare-up. No signs of obvious infection. I've been having unprotected sex with new girlfriend for 5 months now and she is fine.

Moving about makes the pain a lot better. Hiking, walking, etc...

Let me know if I can answer any questions.

[throwaway91]

Hey cam3roni,

Do you have any update? Has your girlfriend been tested since you have started having sex? I'm in a similar boat to you, as had a confirmed chlamydia infection (urine PCR), treated successfuly, but then had issues around a week after my initial symptoms had disappeared (pain in groin) which has continued pretty much non-stop for 2 years with no improvement (now its localised to my testicles though). Done a number of Semen PCR tests, all negative, and had two rounds of Azithromycin and one round of Doxycycline.

Pretty confident there is no infection anymore, but now am focused on trying to get rid of the testicle pain and move on with life. Given we have very similar histories, have you tried anything that has worked? I've done physical therapy with no real change in symptoms. 2 years is a long time with no change... My urologist is helpful, and I think he takes comfort that I don't believe that I have a hidden infection, but he understands the mental barrier that you have to get over and how hard that is.

For me now its about getting the courage to have unprotected sex with a partner again - I'm 80% of the way there, but would love to see some improvement in my pain first. But that's life. It would be great to be able to discuss with someone in a near identical boat as me (that's part of the problem - it's so difficult to find any people with the same fact pattern).

[cam3roni]

Do you have any update? Has your girlfriend been tested since you have started having sex?

Hi

Sorry for taking so long to reply. I frequent the forums less than I used to. I'll start by answering your first 2 questions. I can give a condition update below. As for the girlfriend getting tested, yes she has been tested a couple times and has had no infections, nor any symptoms. I have ejaculated inside of her probably 120 times since we started dating last year, so she would most certainly have caught something. For the record, I also dating another girl before my current gf for a few months, ejaculated inside of her as well a bunch and she never tested positive or had symptoms.

As for an update on my condition. I am doing really well. I’ve learned ways to manage the condition. For example if I ejaculate while sideways, I really don't have post ejaculatory pain. Sometimes I do get a flare up after ejaculation but it doesn't last more than a day or so and I can even cut it short by ejaculating again (I know weird, sometimes ejaculation actually makes it better). Pain is still localized to the left side of my perineum. My nocturnal erections that were non stop, seemed to have gone away. Sometimes I still struggle to urinate but most of the time its fine if I sit and pee. I am at a point where I am content with my quality of life.

Physical therapy never did much for me. Stretching helps a bit I think though. I have discontinued all medication, they didn't seem to help.

Webslave is right when he says the healing process is a up and down graph that hopefully trends upward over time. I still am vigilant when it comes to trying to keep symptoms at bay and hope within the coming years I am eventually 100% symptom free. ( knock on wood )

If you have any other questions feel free to let me know and I will say a prayer for you.

-Cam

[mfg0325]

Hello throwaway91 and cam3roni, my condition is very much the same as you both, same trigger and same age of onset. Would you guys be willing share some words by email to share advice and experiences ?

[cam3roni]

I am always willing to help. My email is on my profile.

[cam3roni]

Hi guys,

Wanting to check in and give an update and some hope.

I have been pretty much symptom free and 97% better for the last 8 months or so. The only thing I avoid is ejaculating into extra tight things, mainly a super tight vagina as that can possibly give me a little flare. I also make sure I stretch every day and especially after sex.

Struggling with my OCD these days which probably has something to do with my CPPS in the first place but I'll get through that too. There's always something isn't there?!