Back in February, in the midst of a lot of traveling and stress, I felt a tingling in my groin/testicles after ejaculation -- to that point, I was ejaculating so once or twice a day for a week or so, so I thought the initial discomfort might be just overuse. However, the tingling persisted and in two days soon developed into full-fledged bilateral testicular pain, which at its worst nearly bowled me over. My doctor ruled out torsion, and gave me a course of doxycycline just in case -- all STD tests, urine tests, etc. were negative. I felt immediately better upon taking the doxy, but maybe a few days after the testicular pain/discomfort returned. Ultrasounds indicated nothing abnormal except for a varicocele, which has since been ruled out as a source of pain; similarly, MRI of lower back (to look for pinched nerves, etc) were fine. Over the next two months I had another course of Doxycycline and a Oflaxacin before being referred to Urologist #1. This one told me "testicular pain is normal; deal with it," and essentially chastised me for taking antibiotics when there was no infection.
I sought a second opinion after a few more weeks of pain. Urologist #2 finally gave me a prostate exam (my first), said "aha! it feels tender" and promptly gave me a scrip for Levaquin in April. 2 doses were all it took to cause me significant joint pain (which still lingers to this day); I stopped that immediately. However, I felt fine in the testicles for a while (interestingly). I went back in May when the pain returned to Urologist #2; he recommended putting me on a 4 week course of Bactrim/Septra, but I resisted, hoping to avoid another allergic reaction to antibiotics. I asked him, "is it likely that I have an infection after all these antibiotics?" to which he responded, "probably you don't have an infection, but antibiotics seem to help patients with your problem."
Well, my pain got to be pretty bad again sometime in July/August, at which point I saw Urologist #3. He also just gave me a prostate exam, said "huh, your prostate is really tender," and prescribed me Macrodantin. Well, again, lacking evidence of a bacterial infection, I resisted; however, this time after the prostate exam, I started feeling internal rectal soreness, lower back pain, and found myself occasionally getting urinary urgency.
Finally, in August, I made two discoveries: one, a urologist who seemed to know what he was doing: Urologist #4 gave me a prostate exam, found it tender, but couldn't extract any fluid to culture; regardless, he put me on a 3 week course of Septra DS, again "just in case." This time I took it; it seemed to help initially, but symptoms came back soon after finishing the course. A month later, in September, another prostate exam actually excreted prostatic fluid (EPS), which was cultured. Lo and behold, after all these antibiotics, the culture of the prostate fluid came back positive with Strep B; they did sensitivity analysis, and due to my allergic reaction to Levaquin/fluroroquinolones (which would have been the first choice), I was put on Keflex/Cephalexin for 3 weeks. Took it, felt somewhat better, but immediately after the course ended, I started feeling in pain again. All throughout, I was trying Tylenol, Ibuprofen, Quercetin, etc, but nothing seemed to really help except time and perhaps hot baths and stretching.
The second discovery in August was finding Headache in the Pelvis, which led me to realize maybe it wasn't bacterial (although the culture seemed to indicate otherwise), and I started going to PT. Initially the skin rolling and internal work were extremely painful, but since then (going on a weekly/biweekly basis), it's been much easier. All throughout, my pain has subsided considerably, but there still are occasional 3-7 day periods of relapse in which I feel pretty terrible.
Anyway, I felt fine for a few weeks, but had a followup prostate exam and EPS culture in November revealed that I still had the same Strep B infection. So I was then prescribed a 10 day course of Azithromycin, which also seemed to help during the course, but immediately after finishing, led to a recurrance of symptoms and pain -- a spot I find myself in today. I'm waiting for a followup in January to see if the Strep had cleared up, which if it was the source of the pain, probably didn't.
In summary, I have taken several courses of antibiotics over the past several months including 2 courses of Doxy (1 wk, 10 day), oflaxacin (10day), Levaquin (2 doses), SeptraDS (3 weeks), Cephalexin (3 weeks), and Azithromycin (10 days). For some reason, up until last month, I still have apparently Strep B in my EPS, despite all urine cultures and other tests showing up negative.
My questions:
#1 - Is it possible that the Strep B in the prostate is innocuous, and perhaps always was there? That is, I don't have chronic bacterial prostatitis, but rather the same non-bacterial chronic prostatitis / chronic pelvic pain syndrome everyone else does, and the Strep is just a red-herring?
#2 - Anyone else have positive cultures in their EPS, but otherwise standard chronic prostatitis / chronic pelvic pain syndrome symptoms? Or, if they did have positive cultures, any luck clearing it up? I've read it can be pretty difficult to clean out prostate infections...
#3 - If I do just have non-bacterial prostatitis/CPPS, would the fact that I feel okay on Antibiotics, but soon after don't, just be due to the anti-inflammatory properties of antibiotics? Ie, as soon as I'm off them, I flare up?
#4- My urologist has been pretty hesitant to use anything other than standard OTC NSAIDs (ibuprofen) or Tylenol for me to handle the pain; he did prescribe me Ansaid (which is pretty strong anti-inflammatory), but my stomach immediately got upset and I had to stop. Any suggestions on bringing up the possibility of getting muscle relaxants prescribed?
#5 - Recently, PT has been getting less effective as fewer trigger points are found in each session, and I'm still in pain afterwards; any one else find the same thing happening?
#6 - Any other suggestions or thoughts or feedback? I apologize for the length of this post, but I really had no idea I'd still be suffering over 10 months later; I've been praying for a solution by the New Year, but perhaps I won't be lucky after all...
Thanks to everyone who made it this far.
