[Question #6423] Epididymitis case still not solved

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68 months ago
Hey, im back again, some new things has come up, but i dont know what to do really (im sorry if i posted this question too fast to my last one, i think my last one was 5 months ago, so i hope thats okay) But i might have figured out the cause, and then again i might not, thats why im here.
I started reading about people who couldn't get UTI's diagnosed, and that some new test called (DNA NGS/DNA Next generation sequency) i bought the test over sea, and got it send to me, took it, and in my 3 years with this stupid pain, i've never had any test show anything, i then got the test back and it showed (85% stapholycoccus saprothyticus. and 13% stapholycoccus epidermis) when i saw this i litterally felt to the ground and broke down, finally i got answers, but after that i went to the doctors they didnt really know what to do and what this bacteria was, then i got in contact with an urologist, he didnt really know either, but prescribed me (Dicloxacillin) for 2 weeks, sadly, that didnt work at all, and i felt straight back into deep depression. Right now im waiting for a call back in about 3 weeks to the hospital, but i have some questions that i hope you can answer that apparently no doctor i met here could answer. Ohh and another thing, i wanted to take a test at the hospital in my region before the medicin, but the test came back without anything, which was a huge letdown aswell.

Is this transmittable through sexual contact? should my girlfriend be treated for this aswell? according to him he was pretty sure she shouldn't but i dont understand why i would have it and not her, maybe you know?

is this new test reliable? You might have heard about it aswell

how bad is this, if i had gone around with this bacteria for so long and will it actually ever be fixed?

(Dr. Edward Hook. Is the doctor who followed up on my case for the last 2 years, for whoever of the doctors who read this)


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H. Hunter Handsfield, MD
68 months ago
Welcome back to the forum, although I'm sorry you found it necessary. Be aware that the intent and focus of this forum is to help with STD problems (and HIV), but you clearly have no STD -- which was Dr. Hook's conclusion in at least the most recent if not all three of your previous threads. Non-STD genital symptoms are not part of our domain. That said, I'll do my best to help. But please do not expect conclusive answers and perhaps not very much help at all.

This whole business is complex and I imagine other questions along these lines will come up on the forum. So I'm using this as an opportunity for a blog-like reply to use in the future, about DNA next-generation sequencing (NGS) and the urinary tract. It might be more than you're expecting, but please bear with me. Much of this is based on a brand new scholarly review -- so new that so far it has only been e-published ahead of print, with the printed version coming out in a major journal (Journal of Clinical Microbiology) sometime in the next few months. It's by one a research group experienced in DNA next generation sequencing (NGS):  https://jcm.asm.org/content/early/2019/10/10/JCM.00204-19 

Let's put DNA NGS into context. This is a new technology that has begun to reveal a lot of surprising information for human physiology and infections. NGS has shown that urine and the bladder lining are not sterile, but (like all other body cavities) have their own "microbiome", i.e. a whole bunch of bacteria that often, for a variety of reasons, don't show up on standard culture or PCR. Unfortunately, NGS in general, and in particular for the urinary tract, is best described as not yet ready for prime time:  the research has not resolved most of the mysteries about unexplained genital symptoms. It doesn't surprise me to learn that some labs are offering it in hopes of diagnosing such problems, but so far just about the only clinical entitites that have been researched are overactive bladder, the condition called interstitial cystitis, and recurrent UTI. Among other things, finding a particular organism by NGS and then treating it with antibiotics known to be active has, with perhaps rare exceptions, made any difference in patients' symptoms.

Even more pertinent to your situation, there has been no research at all on NGS in nongonococcal urethritis, epididymitis, prostatitis, or chronic pelvic pain syndrome (CPPS) -- notoriously difficult clinical problems in STD clinics and on this forum. Equally important, NGS tells that the types of staph and strep found in your test are part of the normal bladder/urine microbiome. They are found in most healthy adults have them by NGS urine testing, and their presence cannot be assumed to explain any particular symptoms. Therefore, I'm not at all surprised that treating the staph and strep found in you by NGS made no difference in your symptoms. I'm sorry you got your hopes up that it would. Like many anxious and worried persons, you may have been misled by internet searching; or perhaps by a doctor or lab who don't fully understand the technology.

I haven't read your previous threads with Dr. Hook in detail, but in scanning them, and from the information you provide in yor question, I agree with Dr. Hook in being confident your problem is not due to any STD. I'll also point out that epididymitis does not cause bilateral testicular pain without obvious testicular tenderness and swelling. And epididymitis is not know to last for years, even without treatment. Your symptoms seem much more consistent with CPPS, mentioned above -- previously called nonspecific or nonbacterial prostatitis. Consider googling CPPS (spell it out) for more information. Good places to start are the quite good Wikipedia article and information you can find from the Stanford University Department of Urology. CPPS is not believed to be due to infection, and it does not respond to antibiotics of any kind. (I hope it won't be too long that CPPS will be studied with NGS.) The good new about CPPS is that no matter how severe the pain or discomfort, it has never been know to lead to anything serious:  no cancer, infertility, or health problems of any kind in affected men's sex partners. It's an issue of comfort, not disease.

That's the best I can do. I hope the information is helpful. Let me know if anything isn't clear.

HHH, MD
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68 months ago
Ahh okay, so i should take the results with a grain of salt, i did read something about the test sometimes show alot of things that might not even be the cause to someone's problems.

I did read alot about CPPS last year but i find my symptoms to be a bacterial problem, i just wanna point out that i don't have bileteral pain either, when i got this in 2017 i got it in the left testicle, but it got cured after a round of antibiotics (Doxycycline) if  i remember correctly then after a month i got it back but it was in the right side this time, all this time i had unprotected sex with my girlfriend that im still with now, so i naturally thought that okay since it came back in the otherside it must have been cured and given back to me, i agree with you that this is not a "Classic" STI case. I have some questions i've been thinking about the last couple days, i hope you wanna answer them

Do you think i could have gotten this "thing" from my sexual exposure (unprotected vaginal sex) with another girl 2 months before the pain started in 2017, like could this just be a bacteria that isn't classified as STI such as chlamydia, mycoplasma etc.. but would it be possible that, that was what gave me this - and if yes would that explain why it can't be cured cus my GF has it aswell (Keep in mind i know this is not a STI like chlamydia and such - but more like a natural bacteria that my body just couldn't handle)

about CPPS i have a clear discharge aswell, that makes my urethra shut in the morning, which i find more to the bacterial side of things than pelvic problems, i have tried pelvic therapy though, and found some relief, but it was hard for me to tell if the relief was from me being tight as hell cus i walk around with pain, or if the pain actually did fade abit from it, gonna give it another try, since my uncles wife has a chiropractor place so i can easily get started up again.

I've been really open about my fear for what this might be to my GF, and she tells me she has no symptoms and never had, but i still can't connect the dots - like how i was cured first and then it came back in the otherside, and why can't it be cured again. 

Thanks for the nice reply about the tests and stuff earlier though. And like always, im happy i could come in here and talk about this these are just some questions i can't find answers on, but you might.





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68 months ago
Ohh and i forgot something, if you have unprotected vaginal sex with 2 different people like in a couple hours after the other, without showering would that be able to cause something like this? this is something that has been on my mind for a long time
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H. Hunter Handsfield, MD
68 months ago
"i did read something about the test sometimes show alot of things that might not even be the cause to someone's problems." Exactly right.

"I did read alot about CPPS last year but i find my symptoms to be a bacterial problem, i just wanna point out that i don't have bileteral pain...." Thanks for clarifying the story. It sounds like you indeed had epididymitis. Many cases are not due to STD; indeed, if you're over 35 years old, the chance of an STD cause was very low. OTOH, the timing of your initial episode and its response to doxycycline suggests you may have had sexually acquired epididymitis at that time, perhaps with false negative tests for chlamydia and gonorrhea. But that doesn't imply a continuing infection, STD or otherwise. When any body part is injured, whether from trauma, infection, or anything else, it is common for pain or signs of inflammation to continue long afterward. Think of the sprained ankle that still hurts long after it has healed by all objective criteria. Perhaps something like this, rather than CPPS, explains your problem. Whether or not you had an initial STD or other bacterial infection, I doubt that's the current problem.

As for a bit of clear urethral discharge in the morning, this isn't necessarily abnormal. Most men have this from time to time, some more than others. The usual explanation is pre-ejaculate fluid remaining from natural nocturnal erections, which occur a few times a night in most men, most often during dream sleep. And completely clear discharge rarely indicates infection.

Men with nonsexually acquired epididymitis, CPPS, prostatitis, or anything else are not at increased risk for any serious health problem:  no infertility, cancer, urethral stricture, or other serious outcomes. And they carry no danger at all for their sex partners. Indeed, many experts advise increased sexual activity, believing it might help improve symptoms. You should not be at all concerned about giving anything to your girlfriend. Your best approach may be to just live with the discomfort, secure in the knowledge that you have symptoms but not necessarily any disease, and that nothing bad will happen.

And no, frequency of sex, no matter how many partners, could not cause anything like this (except maybe symptoms attributable to anxiety or guilt).---
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68 months ago
But if i did obtain lets say Chlamydia back then, how would i not have given it to my Girlfriend, since we had sex on a daily all the way till my symptoms started and that could also explain why it came back, but i just had so many STI tests done, and all was negative, im just so confused, cus if i did obtain it, there would be no way my girlfriend wouldn't have gotten it aswell, and still would have it, she's never taken any medicine and never had any tests done since all of mine came up negative she didnt find the need to, like i said we were having sex daily at the time of where i should have been exposed to it. What do you think about all that?
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H. Hunter Handsfield, MD
68 months ago
If both your and her chlamydia tests were negative, probably you never had it. Same for gonorrhea. At any age, non-STD bacterial epididymitis occurs, and so do cases with no known infection at all. Even certain drugs can cause it as an occasional side effect.

And although not apparently pertinent to your case, you misunderstand a simple, basic fact about STDs:  they are not transmitted all the time. It's not rare for chlamydia or other to never be acquired by a regular sex partner. Some people may be naturally immune; others may have previously been infected and now resistant; and in still other cases there's just no explaining it. But it happens quite frequently. (Don't get me wrong:  probably you never had chlamydia or gonorrhea either.)

However this started, I don't see that it matters now. At the present, you have no STD, whatever the cause of your testicular pain or any other symptoms. If symptoms continue and you remain uncertain, find a urologist, preferably one who understands these somewhat complex issues (e.g. at an academic medical center). Or just go on with your life and don't let this bother you so much. Life is full of mysteries, medical and otherwise.

That completes the two follow-up exchanges included with each question and so concludes this thread. I hope the discussion has been helpful. Good luck.
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