One thing I forgot to say was "congratulations" to TempName on the new, upcoming addition to his family.
I am still gobsmacked that it takes 6 months to see a urologist over on that side. That is absolute bollocks! I think this is an instance where you have to raise hell by being loud with your GP and being extra inquisitive with the specialist(s). If I were you, I would bring someone else along to these doctor visits if at least for moral support and as someone else who will advocate for you in getting better medical treatment.
Is your doctor the same one who took too long to give you the medication initially two years ago? I'd drop that SOB fast and get a new doctor (which is what I ended up doing). This is a tough disease to treat and it's most likely why they have been blase about it this whole time with you. Honestly, though, you cannot take a back seat and expect these guys to read your mind. You have to actively participate in these visits by bringing up your options (if they fail to mention them to you).
This is what I'm in the process of doing:
1. Scheduled a new patient visit after doing thorough research about who is a good, local GP.
2. Next, run through a whole battery of routine tests again - urinalysis with culture, maybe a urethral swab, prostate check, prostate fluid check, sexually transmitted disease check, auto-immune disease check, and request another testicular ultrasound (this time with emphasis for the radiologist to look at the epididymes and spermatic cords for any abnormalities).
3. This whole time, I'm telling the new doc I'm in extreme pain (and exaggerate!).
4. I'll discuss pain management with him or her and ask about steroid shots and nerve blocks, as well as physical therapy and accupuncture or how to go about obtaining those if they're not available.
5. I've already requested to see another urologist and I may possibly ask to see a neurologist (in case this is nerve-related), but, this time, I'll have all the new tests and everything I want to discuss outlined, so that he or she doesn't blow me off.
6. If the specialists tell me they have no clue as to the cause and treatment, then I'll ask if they can refer me up the line to someone who might, which is how I am now scheduled to see academic urologists from UC Irvine/UCI and UC Los Angeles/UCLA... and if they fail, then I'll request someone from UC San Diego/UCSD or Cedars-Sinai in Los Angeles.
7. My goal is to exhaust as many of the conservative treatments as possible and trying to see some of the best specialists (or those associated with the best) before I go under the knife (or in this case... get cut up by a robot).
If none of this works, then I might have to take that leap of faith and have the epididymes removed. This will in effect end any possibility for me getting married and having children of my own, at the very least. Although, now seeing how f***ed up I ended up being, it's probably for the best.
-JCA
I think it's just the psychological aspect of being sterile is what gets me, TempName, but be assured I have looked up those alternatives for the worst case scenario. I've even looked up what testicular prosthetics look like hahah!
BlueTaylor, there is no contraindication to taking cipro with ibuprofen. The cipro is the antibiotic that is supposed to target the harmful bacteria and the ibuprofen is to reduce the swelling and pain. Still, be careful with any other side effects from cipro, such as rashes, joint pain, tendon pains, etc. As soon as you see something like that, contact your doctor and see if you might need to discontinue taking it.
As far urinary frequency, that might be the result of you drinking more liquids and being less active. It shouldn't be too much of a concern unless you're waking up more than once per night to urinate.
I was in so much pain that's exactly what I had to do Had my testicle removed
Holy sh!t, man. I hope you're not experiencing any of that severe pain anymore.
I just came back from seeing the UCI Medical Urology doctor aaaaaand... nothing! Hahaha. This urologist and his nurse practitioner were stumped by what I have. He honestly could not tell what the hell is wrong with me. On paper and ultrasound scans, I am perfectly fine, but one look at me and he knew something was really wrong with my testicles. He did the usual physical exam, had a feel around them, made me cough, and he said, "There is something wrong with the positioning of your testicles."
At one point, he even brought up the idea I might have intermittent torsion on my right testicle! Oh man, I actually chuckled at that because I told my previous urologists I think I might have that and they totally blew me off. Hey, so it turns out I can make pretty good guesses at this, too. I'm not here to rip on the guy, though, because his frankness about the whole thing is what made him seem a little more trustworthy than the usual specialist douchebags I've dealt with before and I trust his surgical expertise a hell of a lot more than most anyone in the field.
He said he would have a pain management clinic get in contact with me to schedule a... drum roll, please... a nerve block! I'll go along with this because I'm genuinely curious as to what it will do. I'm hopeful they can at least get to the bottom of what is wrong with my right testicle. I'm not as hopeful about the left one, which just sits there, hanging really low and looking all menacing, as if it's warning me that it will tort and kill me with pain. The specialist said that if the nerve block works, then he might be able to do exploratory surgery (I should have pressed on this issue more). He did warn me that a blocking a nerve will feel really weird... numbness galore! Some guys can't stand that sensation. A surgical denervation makes that annoying numbness PERMANENT.
Anyway, it was interesting to see the people at UCI Medical Urology being genuinely perplexed by what they were looking at knowing they are at the top of their field. He said, "It's not a simple solution." See? I KNEW this wasn't some simple, BS "epididymitis" diagnosis. This guy would rather put it into the more general, all-encompassing diagnosis of... CPPS (chronic pelvic pain syndrome). In other words, similar or the same as prostatitis, although I doubt my prostate is the cause of all of this (this is another thing I should have pressed more). However, I think I might hold off on seeing the UCLA Clark Urology guy until I've exhausted UCI Medical Urology's ideas and alternatives.
I'm gonna go back to my GP to see about getting accupuncture and physical therapy for pelvic floor muscles.
JCA, Here is my latest ,on March 11 2014 my Dr gave me some Gabapentin to take 3 times a day they do ease the pain off slightly BUT my Blood Pressure is now high ,one of the side effects of taking Gabapentin is high blood pressure ,so next week I have to see a Dr for him to decide what he's gonna do,the Doctor that I will be seeing is a NEW Dr as mine is on leave I am going to ask him if I can see a decent urologist not one that gives advice of take 2 Paracetamol .
I've had over 2 Years of this now .
Please let me know how you get on with your next move.
I am going to ask this new Dr I'm seeing next week what are my further options.
Take it easy my friend. Welsh Guy.
I hate to be the bearer of bad news, but the thing about the nerve block injections is that they may offer temporary pain relief and you have to get more once their effect wears off. This effect is numbness. If you decide to have the denervation surgery, then you will have pelvic and scrotal numbness for life. One other thing is that in some instances the pain will come back even after denervation. There aren't huge studies on this to be able to tell how successful it is because the surgery is rare.
I had the nerve block injection yesterday and it has helped for now but we will see how long it lasts. My best results is sitting in hot water at night for about 45 minutes and not lifting anything over 20 lbs. Lifting seems to be a killer! I had the left testicle and epididymis removed in Jan 2014 but the right side has now become a problem. Dr. I saw today said at your age it is not a big deal to have the other one removed also and use the testosterone therapy treatments. 65 yrs old
I just turned 34... if that was my option, then just euthanise me. I feel as if I'm dead anyway.
Please keep us updated how it goes re the nerve block injection.Thanks Welshguy
Stay FAR away from propecia/finasteride!
I had the nerve block on Tuesday and it is now Thursday and some minor relief but was told the injection site might cause a little pain for a while but we will see. I will repost next week and let you know how it is working out. I have some of this cream from NZ called Anti-Flamme in a purple jar and rubbing it on believe it or not will really knock down the pain for several hours. I use it at night after a soak and at least I can get 5 hours of sleep without waking up in a lot of pain.
poor me